health and social care case study examples

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Case study 1, case study 2, case study 3, health and social care case studies.

Published: 3 March 2016

Last updated: 3 March 2016

What countries does this apply to?

Increasing awareness of bowel cancer symptoms among the Asian Community –NHS Hillingdon Clinical Commissioning Group (Formerly NHS Hillingdon)

This case study illustrates the benefits of collecting and using equality information to identify the needs of people with particular protected characteristics and to measure progress in responding to those needs over time.

NHS Hillingdon Public Health Team looked at the information available on cancer types and rates in the Borough in 2010. They found that:

• Among cancers, bowel cancer accounted for a large proportion of cancer deaths;
• More people under 75 were dying of cancer in the South of the Borough which has a high Asian population compared to in the North;
• Cancer was a substantial contributor to inequality in death rates, particularly among women living in the most deprived 20 percent of the borough.

Cancer can often be successfully treated if detected early. For example, eight out of 10 cases of bowel cancer can be treated successfully if detected early .

Action taken

Based on the baseline data outlined above, the Public Health Team decided to launch an awareness campaign in the South of the Borough (Hayes and Harlington) which has a high Asian population.

The Public Health Team found that members of the Asian community had more limited awareness of the symptoms of bowel cancer, which was reducing the chances of early diagnosis with implications for survival rates. One of the reasons for this appeared to be that Asian people felt that cancer did not affect their family or their community (or was less likely to affect them).

In light of these findings, NHS Hillingdon focused their campaign on various actions to raise awareness of the symptoms of bowel cancer among the Asian community, particularly women. Those actions included:

• Designing and distributing leaflets about bowel cancer in English and in relevant Asian languages;
• Holding workshops, facilitated both in English and in other predominant languages. These were organised through existing local organisations e.g. women's groups or charities particularly targeting Asian communities or religious centres;
• Displaying campaign posters on buses and in tube stations in the Borough;
• Promoting messages by advertising on the Sunrise Radio Network - the UK's largest Asian radio network.

Surveys undertaken before and after the campaign revealed that awareness of the main symptoms of bowel cancer increased among people who had received information from the Public Health Team. Almost 80 percent of those who had seen or heard at least one element of the campaign could spontaneously recall at least one symptom, compared to less than 60 percent of those who had not been exposed to promotional material.

Advertising on the Sunrise Radio Network was found to be particularly successful in reaching Asian women.

Using equality information to reduce non-attendance at the Diabetic Eye Screening Programme - Royal Marsden NHS Foundation Trust

All people with diabetes are at risk of developing diabetic retinopathy. This is the most common cause of blindness in people of working age in the UK. There are usually no obvious symptoms until it is well advanced. Evidence shows that early detection and treatment can prevent sight loss. It is therefore very important that it is identified and treated as early as possible.

The Diabetic Eye Screening Programme (DESP) offers annual eye screening to people with diabetes. Data collected in 2011/2012[1] about patients who did not attend showed that the service had the highest non-attendance rate (21.2 percent) of all services delivered by Sutton and Merton community services.

Actions taken

A health equity audit was commissioned to look at equity of service provision, uptake and outcomes among patients referred to the DESP. The audit looked at whether there were differences between the non-attendance rates of people with particular protected characteristics, i.e. age, gender and ethnicity.

The audit concluded in late 2012. It showed that patients of working age were more likely to miss appointments compared with older age groups, and the highest non-attendance rate (40 percent) was found in the 22-31 age group.

To improve accessibility for patients of working age, the service has expanded its out-of-hours provision to include weekend clinics. It also offers patients the option to make and change their appointments by email so that busy patients no longer have to call during working hours to do this.

These initiatives have contributed to reducing the overall non-attendance rate for the DESP.  It has gone from 21.2 percent in 2011/12 to 15 percent in 2012/13.

Such a reduction in the non-attendance rate represents a financial saving for the Royal Marsden[2]. In addition, given the important role of screening in the early detection of diabetic retinopathy, such initiatives should have a positive impact over time in preventing sight loss among patients of working age.

Additional work currently under way

The audit commissioned in 2012 also suggested that White and Asian females and African males had higher non-attendance rates when compared with other ethnicities. However, it cautioned against drawing conclusions due to the quality of the data available.

As a result, the service has amended the data collection process for primary care providers. This will provide a more complete ethnicity profile for the population in future and will be used to re-audit service uptake in 2014/15.

[1] For the Royal Marsden Patient and Membership Equality Profile report 2011/2012

[2] According to the Dr Foster Hospital Guide 2012, 5.8 million outpatient appointments were missed by patients in 2011/2012, representing a loss of potential revenue to the NHS of £585 million. Reducing non-attendance rates not only represents a financial saving for the NHS, it is also a way to reduce waiting times and to improve efficiency.

Supporting job applications from disabled people: improving confidence and work experience for disabled people - Frimley Park Hospital

In its employment equality compliance report for 2010/2011, the Frimley Park Hospital NHS Foundation Trust (the Trust) noted that it had received fewer job applications from disabled people than might be expected, given that eight percent of the population in its catchment area is estimated to have a disability.

Although disability is generally underreported among applicants in the job market, the Trust felt that a specific commitment was needed in order to encourage more disabled people to apply for jobs at the Trust. Mindful of the specific duties (under the Public Sector Equality Duty), the hospital defined the following objective to fulfil this aim:

• Work with organisations such as the Shaw Trust to place disabled people with the aim of developing skills and confidence to support long-term employment prospects. This includes provision of support for applying for permanent posts within the organisation.

In 2012/2013, the hospital contacted the Shaw Trust to ask for curriculum vitae of disabled people who were looking for work placements. The Shaw Trust put forward three curriculum vitae and the hospital identified placements that would best suit the skills of these individuals. Assistance with job applications/interviews was given at the end of the placements so that the three individuals could apply for temporary and permanent positions within the Trust.

In 2012/13, the Trust reported the following progress: out of the three disabled people appointed through Shaw Trust on work placements, two have now been appointed as temporary staff, and one to a permanent post.

The work placements at the hospital made a significant difference to the lives of those involved. In particular, it has enabled participants to gain skills and confidence to apply for jobs afterwards. One participant stated that it has enabled him to demonstrate his skills in a real workplace which gave him the confidence to apply for a permanent post in the Trust. 'At the interview, I could talk about real work skills I had developed in my placement, something I had previously been unable to do'.

The hospital is still working with the Shaw Trust to continue providing more disabled people with potential job opportunities in the coming years.

Advice and support

If you think you might have been treated unfairly and want further advice, you can contact the  Equality Advisory and Support Service (EASS) .

The EASS is an independent advice service, not operated by the Equality and Human Rights Commission.

Phone: 0808 800 0082  

Call the EASS on:

0808 800 0082

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3 March 2016

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Scottish Graduate School of Social Science

Improving person-centred care communication in health and social care settings.

PHD STUDENT: Natalia Rodriguez UNIVERSITY: Heriot-Watt COMPANY: Healthcare Improvement Scotland

In January 2019 Healthcare Improvement Scotland welcomed Natalia Rodriguez to undertake a 3 month internship. Natalia is studying for a PhD with a focus on interpreting in mental healthcare settings at Heriot Watt University. During her time at Healthcare Improvement Scotland she worked within the Evidence and Evaluation for Improvement Team (EEvIT), supporting them to evaluate the ‘What Matters to You? Day’ (WMTY) initiative that is facilitated by the Person Centred Care Team. Natalia was happy to share information about her experience below. 

"It has been an absolute joy working with Natalia. She has been a breath of fresh air. She picked it up quickly and I didn't feel that I had to direct her too much. I think we really lucked out on Natalia's skill set." Colleague from HIS

What attracted you to this internship?

When I first saw the advertisement for an internship position for PhD candidates with Healthcare Improvement Scotland (HIS) I was both thrilled and hesitant about applying. On paper, I was a good candidate, but I wondered if my academic background would be the right fit for the organisation. On the other hand, I was sure that it would be a great opportunity for me and that I definitely wanted to put my research skills to use in public healthcare.

My PhD had already given me the chance to witness the work of the NHS first-hand. For data collection purposes, I observed consultations conducted through spoken-language interpreters in two psychiatric wards within NHS Lothian for over a year. During this time, I not only collected data but also learnt lessons about human resilience that I will always carry with me. Having finished the data-collection work in December, I have now a year of funding left to convert my data into a thesis. So, the chance to work with HIS in this transition stage could not have come at a better time!

What did you do?

During my time at HIS, I supported the Evidence and Evaluation for Improvement Team (EEvIT). Specifically, I supported EEvIT to evaluate the ‘What matters to you? day’ initiative that is facilitated by the Person-Centred Care Team within HIS. For this purpose, I conducted primary and secondary research to produce an evidence report called: “‘What matters to you?’ Embedding the question in everyday practice: a multiple case-study”.

Did the internship meet your expectations?

It definitely exceeded my expectations. When I applied for the post, I was expecting that I would be doing some kind of work for a public health organisation, which in itself was to enough to make me feel excited. What I did not know then was that I would be applying my whole range of research skills to explore a topic fully in line with my PhD aims. I really was not expecting that before I started.

How did you utilise your research skills and knowledge during the internship?

There was clear common ground between my PhD topic and the aims of my internship project, which made it possible for me to use my knowledge and apply the research skills required to fulfil my internship aims. My PhD is about how linguistically and culturally diverse patients access healthcare services when they do not share a language with the service provider. During my internship, I evaluated the impact of a campaign that aims to promote a communication model in which patients and practitioners are encouraged to interact as equal partners in the planning of care. Methodologically speaking, for my PhD I have adopted a single case-study research design and for my internship, I adopted a multiple-case study design. In summary, my knowledge on the topic and the methodology required to explore was useful as a starting point, but the internship aims required me to take my expertise a step further.

How has it impacted your professional and personal development?

I am not sure about what type of work I will conduct after my PhD but public health and social care provision is definitely a research and personal interest that I am going to carry with me for life after my internship.

I do believe that my internship will help open up a new range of future possibilities that I would have never even thought about until now. The National Health Service is such a complex organisation that encompasses so many different departments, teams and staff with different backgrounds. Particularly, Healthcare Improvement Scotland contains different portfolios that have different objectives but pursue the common aim of driving improvement in the provision of health and social care services. This is an excellent area of work and definitely worth considering in the future.

Are there any outputs from the internship that you would like to share?

It was key for me to meet other people in the organisation outside from the team that I was allocated to work with as that provided me with unintended benefits. E.g. I was able to meet the Equality and Diversity advisor from HIS whose work is closely connected with my research interests and PhD aims. Because of his support, I was able to provide some feedback on a policy document draft around my area of expertise (healthcare interpreting) that will soon be published. That was not part of my internship aims but I definitely count that as one my main internship accomplishments.

What transferable skills did you learn?

Communicate clearly with a wide audience. During my internship I worked with a multidisciplinary team made up of health service researchers, a health economist and an information scientist. During data-collection, I interviewed people with a wide range of backgrounds including consultant, nurses, health service managers, etc. Developing appropriate timescales and sticking to them which was key to success as I was fully responsible for the development of the project. Being flexible: we had to consider different study designs as we depended on data availability.

How did you find coming back to your research after the internship?

I feel more confident now when approaching my PhD dataset. I did my internship during a transition time, right in between finishing data collection and starting data analysis and subsequent reporting. During my internship, I had to analyse and report data and that gave me a small-scale taster of what would come after. A team of health service researchers supported my work and provided guidance at all times so that I could fulfil my internship study aims. I am going to keep using that guidance to safeguard rigour in my own research work. I feel that I have more research tools and resources now.

What advice would you give other PhD students thinking about an internship?

1- Be more confident in their own potential contribution to the hosting organisation. I think that they might find it refreshing to work with someone new who brings a unique set of research skills to their organisation. 2- Remember that you do not need to know everything from the beginning as people want you to do well and will train you and you learn on the job 3- Your co-workers are engaged in their own routine so speak up if you need anything from them as they may not be used to having an intern. It is important to be self-directed (within limits and guidance)

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Case studies

Watch their stories - crg homecare.

Meet Molly, Connor and Ella Phoebe - they tell us what it's like working in the rewarding world of adult social care and supporting people like Martin, who describes the impact their support has had in helping him to live an independent life. These videos were created in collaboration with  CRG Homecare .

Meet our carers - Curado

Meet Kimberly, Connar, Ada, Augustine, Juliana and Gloria, who discuss working in mental health care and share their tips and advice for others interested in a career in adult social care. This video was created by Curardo , who specialise in making a difference in the lives of people with mental health needs.

Direct care roles

These roles involve directly working with people who need care and support

Positive behaviour support assistant, Clara Burfutt

Clara supports adults with mental health conditions who also have behaviour that challenges.

Mental health support worker, Darren Sewell

Darren supports two people with mental health conditions in a small care home.

Management roles

Care supervisor, emma stowell.

Emma supervises a team who provide care to people in their own home.

Senior Care Assistant, Luke Britton

Luke works in a residential home for older people and is responsible for ensuring his shift runs smoothly.

Assistant manager, Aiste Trimakaite

Aiste supports with the management of a care home for people with mental health conditions.

Operational Lead, Adam Skerritt

Adam is responsible for the day to day running of the children and young people’s services in his local council.

New Projects Manager, Andrea Wiggins

Andrea works in a team who set up special services for people with learning disabilities and/ or autism.

Locality Manager, Chris Hocking

Chris manages a team of 30 care workers who go out and provide care in people’s homes.

Intervenor Service Manager, Deb O’Shea

Deb manages a team who support people with sight and hearing impairments, ensuring they get the services they need.

Registered Manager, Linda Douglas

Linda works for a domiciliary care provider and she supports a team with induction, supervision and training.

Registered Manager, Linda Pitt

Linda works in a care home for older people and is responsible for the day to day running of the home.

Home Care Manager, Liz Ingham

Liz works for her local council and assesses people who need care and support in their own home.

Managing Director, Michelle Apostol

Michelle is responsible for ensuring the organisation and its staff deliver high quality care.

Team Manager, Mike Maden

Mike manages three residential care homes for people with learning disabilities including organising activities for residents.

Head of Care Services, Nicola Taylor

Nicola is part of a development team who are building a new care service to support people with dementia.

Cluster Manager, Sally Gibbons

Sally manages a team of care workers who offer care, outreach and supported living services in the community.

Deputy Manager, Sophie Layton

Sophie supports the manager of a care home for people with learning disabilities with the day to day running.

Founder and Manager, Chris McGowan

Chris is the founder of a care agency who connect self-employed carers with people who need care and support at home . 

Other social care roles

Support coordinator, julie king.

Julie works in a supported housing scheme and is responsible for the wellbeing and safety of residents who live there.

Team Leader and Moving and Handling Trainer, Nicola Pullen

Nicola has taken on additional responsibilities in her role to deliver moving and handling training to other staff.

Training Manager, Adrian Muir

Adrian organises and delivers training for care workers. He also runs induction sessions for new workers and thinks of new ways to run training.

Independent Living Advisor, Martin Hayden

Martin provides support and advice to people who need care and support to help them access the services they need.

Office Manager, Julie Allen

Julie’s office role covers a range of tasks including training and supervision, interviews, sorting out wages and creating care plans.

Payroll Officer, Charlotte Truslove

Charlotte supports people who employ their own care and support to manage their finances and pay their carers.

Sales and Marketing Manager, Mike Allistone

Mike is responsible for promoting seven care services to potential customers.

Tenancy Sustainment Officer, Georgina Towers

Georgina visits vulnerable people in the community to help them remain their homes.

Independent Living Coordinator, Simon Ward 

Simon supports disabled people to access the right services to help them live more independently.

Learning and Development Manager, Gemma Tomkinsmith

Gemma organises and delivers learning and training to ensure staff have the right skills and knowledge.

HR and Care Manager, Melissa Hall

Melissa works for a care agency and is responsible for recruiting self-employed carers. 

Learning and Development Manager, Carol Glanfield

Carol identifies training needs, organises and delivers high quality training to ensure her colleagues have the knowledge and skills they need to deliver high quality care.

Regulated roles

Occupational therapist, penny marks-billson.

Penny supports people who have just left hospital or are at risk of going into hospital to help them live at home.

Occupational Therapist, Hanna Munro

Hanna supports six care homes with fall prevention, wheelchair and seating assessments, daily living equipment and rehabilitation.

Social Worker, Jane Haywood

Jane supports older people when they come out of hospital, and also coaches and mentors a social work team.

Social Work Practice with Carers

Case Study 2: Josef

Download the whole case study as a PDF file

Josef is 16 and lives with his mother, Dorota, who was diagnosed with Bipolar disorder seven years ago. Josef was born in England. His parents are Polish and his father sees him infrequently.

This case study looks at the impact of caring for someone with a mental health problem and of being a young carer , in particular the impact on education and future employment .

When you have looked at the materials for the case study and considered these topics, you can use the critical reflection tool and the action planning tool to consider your own practice.

• One-page profile

Support plan

Transcript (.pdf, 48KB)

Name : Josef Mazur

Gender : Male

Ethnicity : White European

Download resource as a PDF file

First language : English/ Polish

Religion : Roman Catholic

Josef lives in a small town with his mother Dorota who is 39. Dorota was diagnosed with Bi-polar disorder seven years ago after she was admitted to hospital. She is currently unable to work. Josef’s father, Stefan, lives in the same town and he sees him every few weeks. Josef was born in England. His parents are Polish and he speaks Polish at home.

Josef is doing a foundation art course at college. Dorota is quite isolated because she often finds it difficult to leave the house. Dorota takes medication and had regular visits from the Community Psychiatric Nurse when she was diagnosed and support from the Community Mental Health team to sort out her finances. Josef does the shopping and collects prescriptions. He also helps with letters and forms because Dorota doesn’t understand all the English. Dorota gets worried when Josef is out. When Dorota is feeling depressed, Josef stays at home with her. When Dorota is heading for a high, she tries to take Josef to do ‘exciting stuff’ as she calls it. She also spends a lot of money and is very restless.

Josef worries about his mother’s moods. He is worried about her not being happy and concerned at the money she spends when she is in a high mood state. Josef struggles to manage his day around his mother’s demands and to sleep when she is high. Josef has not told anyone about the support he gives to his mother. He is embarrassed by some of the things she does and is teased by his friends, and he does not think of himself as a carer. Josef has recently had trouble keeping up with course work and attendance. He has been invited to a meeting with his tutor to formally review attendance and is worried he will get kicked out. Josef has some friends but he doesn’t have anyone he can confide in. His father doesn’t speak to his mother.

Josef sees some information on line about having a parent with a mental health problem. He sends a contact form to ask for information. Someone rings him and he agrees to come into the young carers’ team and talk to the social worker. You have completed the assessment form with Josef in his words and then done a support plan with him.

Back to Summary

Josef Mazur

What others like and admire about me

Good at football

Finished Arkham Asylum on expert level

What is important to me

Mum being well and happy

Seeing my dad

Being an artist

Seeing my friends

How best to support me

Tell me how to help mum better

Don’t talk down to me

Talk to me 1 to 1

Let me know who to contact if I am worried about something

Work out how I can have some time on my own so I can do my college work and see my friends

Don’t tell mum and my friends

Date chronology completed : 7 March 2016

Date chronology shared with person: 7 March 2016

Young Carers Assessment

Do you look after or care for someone at home?

The questions in this paper are designed to help you think about your caring role and what support you might need to make your life a little easier or help you make time for more fun stuff.

Please feel free to make notes, draw pictures or use the form however is best for you.

What will happen to this booklet?

This is your booklet and it is your way to tell an adult who you trust about your caring at home. This will help you and the adult find ways to make your life and your caring role easier.

The adult who works with you on your booklet might be able to help you with everything you need. If they can’t, they might know other people who can.

Our Agreement

• I will share this booklet with people if I think they can help you or your family
• I will let you know who I share this with, unless I am worried about your safety, about crime or cannot contact you
• Only I or someone from my team will share this booklet
• I will make sure this booklet is stored securely
• Some details from this booklet might be used for monitoring purposes, which is how we check that we are working with everyone we should be

Signed: ___________________________________

Young person:

• I know that this booklet might get shared with other people who can help me and my family so that I don’t have to explain it all over again
• I understand what my worker will do with this booklet and the information in it (written above).

Signed: ____________________________________

Name :             Josef Mazur Address :       1 Green Avenue, Churchville, ZZ1 Z11 Telephone:        012345 123456 Email:            [email protected] Gender :         Male Date of birth :        11.11.1999        Age: 16 School :            Green College, Churchville Ethnicity :        White European First language :        English/ Polish Religion :         Baptised Roman Catholic GP :            Dr Amp, Hill Surgery

The best way to get in touch with me is:

Do you need any support with communication?

*Josef is bilingual – English and Polish. He speaks English at school and with his friends, and Polish at home. Josef was happy to have this assessment in English, however, another time he may want to have a Polish interpreter. It will be important to ensure that Josef is able to use the words he feels best express himself.

About the person/ people I care for

I look after my mum who has bipolar disorder. Mum doesn’t work and doesn’t really leave the house unless she is heading for a high. When Mum is sad she just stays at home. When she is getting hyper then she wants to do exciting stuff and she spends lots of money and she doesn’t sleep.

Do you wish you knew more about their illness?

Do you live with the person you care for?

What I do as a carer It depends on if my mum has a bad day or not. When she is depressed she likes me to stay home with her and when she is getting hyper then she wants me to go out with her. If she has new meds then I like to be around. Mum doesn’t understand English very well (she is from Poland) so I do all the letters. I help out at home and help her with getting her medication.

Tell us what an average week is like for you, what kind of things do you usually do?

Monday to Friday

Get up, get breakfast, make sure mum has her pills, tell her to get up and remind her if she’s got something to do.

If mum hasn’t been to bed then encourage her to sleep a bit and set an alarm

College – keep phone on in case mum needs to call – she usually does to ask me to get something or check when I’m coming home

Go home – go to shops on the way

Remind mum about tablets, make tea and pudding for both of us as well as cleaning the house and fitting tea in-between, ironing, hoovering, hanging out and bringing in washing

Do college work when mum goes to bed if not too tired

More chores

Do proper shop

Get prescription

See my friends, do college work

Sunday – do paper round

Physical things I do….

(for example cooking, cleaning, medication, shopping, dressing, lifting, carrying, caring in the night, making doctors appointments, bathing, paying bills, caring for brothers & sisters)

I do all the housework and shopping and cooking and get medication

Things I find difficult

Emotional support I provide…. (please tell us about the things you do to support the person you care for with their feelings; this might include, reassuring them, stopping them from getting angry, looking after them if they have been drinking alcohol or taking drugs, keeping an eye on them, helping them to relax)

If mum is stressed I stay with her

If mum is depressed I have to keep things calm and try to lighten the mood

She likes me to be around

When mum is heading for a high wants to go to theme parks or book holidays and we can’t afford it

I worry that mum might end up in hospital again

Mum gets cross if I go out

Other support

Please tell us about any other support the person you care for already has in place like a doctor or nurse, or other family or friends.

The GP sees mum sometimes. She has a nurse who she can call if things get bad.

Mum’s medication comes from Morrison’s pharmacy.

Dad lives nearby but he doesn’t talk to mum.

Mum doesn’t really have any friends.

Do you ever have to stop the person you care for from trying to harm themselves or others?

Some things I need help with

Sorting out bills and having more time for myself

I would like mum to have more support and to have some friends and things to do

On a normal week, what are the best bits? What do you enjoy the most? (eg, seeing friends, playing sports, your favourite lessons at school)

Seeing friends

When mum is up and smiling

Playing football

On a normal week, what are the worst bits? What do you enjoy the least? (eg cleaning up, particular lessons at school, things you find boring or upsetting)

Nagging mum to get up

Reading letters

Missing class

Mum shouting

Friends laugh because I have to go home but they don’t have to do anything

What things do you like to do in your spare time?

Do you feel you have enough time to spend with your friends or family doing things you enjoy, most weeks?

Do you have enough time for yourself to do the things you enjoy, most weeks?  (for example, spending time with friends, hobbies, sports)

Are there things that you would like to do, but can’t because of your role as a carer?

Can you say what some of these things are?

See friends after college

Go out at the weekend

Time to myself at home

It can feel a bit lonely

I’d like my mum to be like a normal mum

School/ College Do you think being your caring role makes school/college more difficult for you in any way?

If you ticked YES, please tell us what things are made difficult and what things might help you.

Things I find difficult at school/ college

Sometimes I get stressed about college and end up doing college work really late at night – I get a bit angry when I’m stressed

I don’t get all my college work done and I miss days

I am tired a lot of the time

Things I need help with…

I am really worried they will kick me out because I am behind and I miss class. I have to meet my tutor about it.

Do your teachers know about your caring role?

Are you happy for your teachers and other staff at school/college to know about your caring role?

Do you think that being a carer will make it more difficult for you to find or keep a job?

Why do you think being a carer is/ will make finding a job more difficult?

I haven’t thought about it. I don’t know if I’ll be able to finish my course and do art and then I won’t be able to be an artist.

Who will look after mum?

What would make it easier for you to find a job after school/college?

Finishing my course

Mum being ok

How I feel about life…

Do you feel confident both in school and outside of school?

Somewhere in the middle

In your life in general, how happy do you feel?

Quite unhappy

In your life in general, how safe do you feel?

How healthy do you feel at the moment?

Quite healthy

Being heard

Do you think people listen to what you are saying and how you are feeling?

If you said no, can you tell us who you feel isn’t listening or understanding you sometimes   (eg, you parents, your teachers, your friends, professionals)

I haven’t told anyone

I can’t talk to mum

My friends laugh at me because I don’t go out

Do you think you are included in important decisions about you and your life? (eg, where you live, where you go to school etc)

Do you think that you’re free to make your own choices about what you do and who you spend your time with?

Not often enough

Is there anybody who knows about the caring you’re doing at the moment?

If so, who?

I told dad but he can’t do anything

Would you like someone to talk to?

Supporting me Some things that would make my life easier, help me with my caring or make me feel better

I don’t know

Fix mum’s brain

People to help me if I’m worried and they can do something about it

Not getting kicked out of college

Free time – time on my own to calm down and do work or have time to myself

Time to go out with my friends

Get some friends for mum

I don’t want my mum to get into trouble

Who can I turn to for advice or support?

I would like to be able to talk to someone without mum or friends knowing

Would you like a break from your caring role?

How easy is it to see a Doctor if you need to?

To be used by social care assessors to consider and record measures which can be taken to assist the carer with their caring role to reduce the significant impact of any needs. This should include networks of support, community services and the persons own strengths. To be eligible the carer must have significant difficulty achieving 1 or more outcomes without support; it is the assessors’ professional judgement that unless this need is met there will be a significant impact on the carer’s wellbeing. Social care funding will only be made available to meet eligible outcomes that cannot be met in any other way, i.e. social care funding is only available to meet unmet eligible needs.

Date assessment completed :            7 March 2016

Social care assessor conclusion

Josef provides daily support to his mum, Dorota, who was diagnosed with bipolar disorder seven years ago. Josef helps Dorota with managing correspondence, medication and all household tasks including shopping. When Dorota has a low mood, Josef provides support and encouragement to get up. When Dorota has a high mood, Josef helps to calm her and prevent her spending lots of money. Josef reports that Dorota has some input from community health services but there is no other support. Josef’s dad is not involved though Josef sees him sometimes, and there are no friends who can support Dorota.

Josef is a great support to his mum and is a loving son. He wants to make sure his mum is ok. However, caring for his mum is impacting: on Josef’s health because he is tired and stressed; on his emotional wellbeing as he can get angry and anxious; on his relationship with his mother and his friends; and on his education. Josef is at risk of leaving college. Josef wants to be able to support his mum better. He also needs time for himself, to develop and to relax, and to plan his future.

Eligibility decision :                Eligible for support

What’s happening next :            Create support plan

Completed by Name : Role : Organisation :

Name: Josef Mazur

Address 1 Green Avenue, Churchville, ZZ1 Z11

Telephone 012345 123456

Email [email protected]

Gender: Male

Date of birth: 11.11.1999 Age: 16

School Green College, Churchville

Ethnicity White European

First language English/ Polish

Religion Baptised Roman Catholic

GP Dr Amp, Hill Surgery

My relationship to this person son

Name Dorota Mazur

Gender Female

Date of birth 12.6.79 Age 36

First language Polish

Religion Roman Catholic

Support plan completed by

Organisation

Date of support plan: 7 March 2016

This plan will be reviewed on: 7 September 2016

Signing this form

Please ensure you read the statement below in bold, then sign and date the form.

I understand that completing this form will lead to a computer record being made which will be treated confidentially. The council will hold this information for the purpose of providing information, advice and support to meet my needs. To be able to do this the information may be shared with relevant NHS Agencies and providers of carers’ services. This will also help reduce the number of times I am asked for the same information.

If I have given details about someone else, I will make sure that they know about this.

I understand that the information I provide on this form will only be shared as allowed by the Data Protection Act.

Josef has given consent to share this support plan with the CPN but does not want it to be shared with his mum.

Mental health

The social work role with carers in adult mental health services has been described as: intervening and showing professional leadership and skill in situations characterised by high levels of social, family and interpersonal complexity, risk and ambiguity (Allen 2014). Social work with carers of people with mental health needs, is dependent on good practice with the Mental Capacity Act where practitioner knowledge and understanding has been found to be variable (Iliffe et al 2015).

• Carers Trust (2015) Mental Health Act 1983 – Revised Code of Practice Briefing
• Carers Trust (2013) The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care in England
• Mind, Talking about mental health
• Tool 1: Triangle of care: self-assessment for mental health professionals – Carers Trust (2013) The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care in England Second Edition (page 23 Self-assessment tool for organisations)

Mental capacity, confidentiality and consent

Social work with carers of people with mental health needs, is dependent on good practice with the Mental Capacity Act where practitioner knowledge and understanding has been found to be variable (Iliffe et al 2015). Research highlights important issues about involvement, consent and confidentiality in working with carers (RiPfA 2016, SCIE 2015, Mental Welfare Commission for Scotland 2013).

• Beddow, A., Cooper, M., Morriss, L., (2015) A CPD curriculum guide for social workers on the application of the Mental Capacity Act 2005 . Department of Health
• Bogg, D. and Chamberlain, S. (2015) Mental Capacity Act 2005 in Practice Learning Materials for Adult Social Workers . Department of Health
• Department of Health (2015) Best Interest Assessor Capabilities , The College of Social Work
• RiPfA Good Decision Making Practitioner Handbook
• SCIE Mental Capacity Act resource  
• Tool 2: Making good decisions, capacity tool (page 70-71 in good decision making handbook)

Young carers

A young carer is defined as a person under 18 who provides or intends to provide care for another person. The concept of care includes practical or emotional support. It is the case that this definition excludes children providing care as part of contracted work or as voluntary work. However, the local authority can ignore this and carry out a young carer’s need assessment if they think it would be appropriate. Young carers, young adult carers and their families now have stronger rights to be identified, offered information, receive an assessment and be supported using a whole-family approach (Carers Trust 2015).

• SCIE (2015) Young carer transition in practice under the Care Act 2014
• SCIE (2015) Care Act: Transition from children’s to adult services – early and comprehensive identification
• Carers Trust (2015) Rights for young carers and young adult carers in the Children and Families Act
• Carers Trust (2015) Know your Rights: Support for Young Carers and Young Adult Carers in England
• The Children’s Society (2015) Hidden from view: The experiences of young carers in England  
• DfE (2011) Improving support for young carers – family focused approaches
• ADASS and ADCS (2015) No wrong doors: working together to support young carers and their families
• Carers Trust, Supporting Young Carers and their Families: Examples of Practice
• Refugee toolkit webpage: Children and informal interpreting
• SCIE (2010) Supporting carers: the cared for person
• SCIE (2015) Care Act Transition from children’s to adults’ services – Video diaries
• Tool 3: Young carers’ rights – The Children’s Society (2014) The Know Your Rights pack for young carers in England!
• Tool 4: Vision and principles for adults’ and children’s services to work together

Young carers of parents with mental health problems

The Care Act places a duty on local authorities to assess young carers before they turn 18, so that they have the information they need to plan for their future. This is referred to as a transition assessment. Guidance, advocating a whole family approach, is available to social workers (LGA 2015, SCIE 2015, ADASS/ADCS 2011).

• SCIE (2012) At a glance 55: Think child, think parent, think family: Putting it into practice
• SCIE (2008) Research briefing 24: Experiences of children and young people caring for a parent with a mental health problem
• SCIE (2008) SCIE Research briefing 29: Black and minority ethnic parents with mental health problems and their children
• Carers Trust (2015) The Triangle of Care for Young Carers and Young Adult Carers: A Guide for Mental Health Professionals
• ADASS and ADCS (2011) Working together to improve outcomes for young carers in families affected by enduring parental mental illness or substance misuse
• Ofsted (2013) What about the children? Joint working between adult and children’s services when parents or carers have mental ill health and/or drug and alcohol problems
• Mental health foundation (2010) MyCare The challenges facing young carers of parents with a severe mental illness
• Children’s Commissioner (2012) Silent voices: supporting children and young people affected by parental alcohol misuse
• SCIE, Parental mental health and child welfare – a young person’s story

Tool 5: Family model for assessment

• Tool 6: Engaging young carers of parents with mental health problems or substance misuse

Young carers and education/ employment

Transition moments are highlighted in the research across the life course (Blythe 2010, Grant et al 2010). Complex transitions required smooth transfers, adequate support and dedicated professionals (Petch 2010). Understanding transition theory remains essential in social work practice (Crawford and Walker 2010). Partnership building expertise used by practitioners was seen as particular pertinent to transition for a young carer (Heyman 2013).

• TLAP (2013) Making it real for young carers
• Learning and Work Institute (2018) Barriers to employment for young adult carers
• Carers Trust (2014) Young Adult Carers at College and University
• Carers Trust (2013) Young Adult Carers at School: Experiences and Perceptions of Caring and Education
• Carers Trust (2014) Young Adult Carers and Employment
• Family Action (2012) BE BOTHERED! Making Education Count for Young Carers

Download The Triangle of Care as a PDF file

The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care in England

The Triangle of Care is a therapeutic alliance between service user, staff member and carer that promotes safety, supports recovery and sustains wellbeing…

Download the Capacity Tool as a PDF file

Capacity Tool Good decision-making Practitioners’ Handbook

The Capacity tool on page 71 has been developed to take into account the lessons from research and the case CC v KK. In particular:

• that capacity assessors often do not clearly present the available options (especially those they find undesirable) to the person being assessed
• that capacity assessors often do not explore and enable a person’s own understanding and perception of the risks and advantages of different options
• that capacity assessors often do not reflect upon the extent to which their ‘protection imperative’ has influenced an assessment, which may lead them to conclude that a person’s tolerance of risks is evidence of incapacity.

The tool allows you to follow steps to ensure you support people as far as possible to make their own decisions and that you record what you have done.

Download Know your rights as a PDF file

Tool 3: Know Your Rights Young Carers in Focus

This pack aims to make you aware of your rights – your human rights, your legal rights, and your rights to access things like benefits, support and advice.

Need to know where to find things out in a hurry? Our pack has lots of links to useful and interesting resources that can help you – and help raise awareness  about young carers’ issues!

Know Your Rights has been produced by Young Carers in Focus (YCiF), and funded by the Big Lottery Fund.

Tool 4: Vision and principles for adults’ and children’s services to work together to support young carers

Download the tool   as a PDF file

You can use this tool to consider how well adults’ and children’s services work together, and how to improve this.

Click on the diagram to open full size in a new window

This is based on ADASS and ADCS (2015) No wrong doors : working together to support young carers and their families

Download the tool as a PDF file

You can use this tool to help you consider the whole family in an assessment or review.

What are the risk, stressors and vulnerability factors?

How is the child/ young person’s wellbeing affected?

How is the adult’s wellbeing affected?

What are the protective factors and available resources?

This tool is based on SCIE (2009) Think child, think parent, think family: a guide to parental mental health and child welfare

Tool 6: Engaging young carers

Young carers have told us these ten things are important. So we will do them.

• Introduce yourself. Tell us who you are and what your job is.
• Give us as much information as you can.
• Tell us what is wrong with our parents.
• Tell us what is going to happen next.
• Talk to us and listen to us. Remember it is not hard to speak to us we are not aliens.
• Ask us what we know and what we think. We live with our parents; we know how they have been behaving.
• Tell us it is not our fault. We can feel guilty if our mum or dad is ill. We need to know we are not to blame.
• Please don’t ignore us. Remember we are part of the family and we live there too.
• Keep on talking to us and keeping us informed. We need to know what is happening.
• Tell us if there is anyone we can talk to. Maybe it could be you.

• Equal opportunities
• Complaints procedure
• Terms and conditions
• Privacy policy
• Cookie policy
• Accessibility

Hull Adult Social Care APPP

Case Studies

These case studies have been taken from the Care and Support Statutory Guidance (Department of Health and Social Care) . They should be read in conjunction with the relevant chapter.

Preventing, Reducing or Delaying Needs

Market shaping and commissioning of adult care and support, assessment and eligibility, independent advocacy, deferred payment agreements, care and support planning, personal budgets, direct payments.

Review of Care and Support Planning

Safeguarding

Integration, cooperation and partnerships.

Transition to Adult Care and Support

Delegation of Local Authority Functions

Ordinary residence, cross border placements, case study: linkage programme.

The LinkAge programme aims to promote and enhance the lives of older people (55+ years old) through a range of activities, from walking groups to coffee mornings, through a number of older people-led ‘hubs’ across the city. The main aim is to bring those people that feel socially isolated and lonely into their local communities. In an evaluation of a new hub there was significant improvement on a friendship scale with scores moving from people feeling isolated or with a low level of social support at the beginning of the hub to very or highly socially connected at follow up.

Eileen (85) said:

“I look forward to Fridays each week and enjoy the social aspect of the club too.”

“If it wasn’t for LinkAge I don’t quite know what would have happened. It’s made life bearable, well more than bearable, it’s made it life.”

Case Study: Older man living alone

An older man lives alone with some support from his daughter who works full-time. He needs occasional personal care to remain living independently with dignity, and it is likely that these needs will increase. He has lost contact with family and friends following his wife’s death and rarely goes out without support from his daughter who is restricted to taking him out at weekends because of work commitments.

An assessment would consider all of his needs, including those currently being met by his daughter, along with the outcomes he wishes to achieve. A separate carer’s assessment offered to his daughter (or a combined assessment if both father and daughter agreed) would establish the daughter’s willingness and ability to care and continue to care and how best to promote her own wellbeing, for example by having regard to the outcomes she wishes to achieve. This joint assessment would look at issues such as the possible impact on the daughter of supporting her father while in full-time employment as well as the father’s isolation, ability to connect with others or be an active citizen.

Community groups, voluntary organisations, and buddying services could support the father to reduce the social isolation that he may be feeling and maximise opportunities to look after his own health and wellbeing and participate in local community activities. This, in turn could lessen the impact of caring on his daughter and enable her to continue to support her father effectively alongside paid employment. Such support can be identified/suggested alongside other, perhaps more formal services to meet personal care needs, and can be an effective way of promoting wellbeing. In this example, the aspects of wellbeing relating to social wellbeing and family relationships might be promoted.

Case Study: Derby City Council’s Customer Journey

Derby City Council used co-production to develop clear and easy to use customer information to support their customer journey for self-directed support. Information that has been produced includes an assessment form, support planning tools for people using services, customer leaflets and a staff handbook. A small project team held discussions and workshops to identify information that needed improving to be clearer and suggestions for improvement, e.g. a new assessment form. Staff working in adult social care assessment teams had training on how to make best use of the new suite of information.

The inclusive approach taken to re-designing the information took longer than an internally managed process, but has resulted in better information, informed people using services and bringing their own perspective and experience. The co-production approach led to the development of key principles which can be used in other areas of communication. The approach is being continued.

Case Study: Midland Heart’s Reablement Service

At 82, Beryl was diagnosed with stomach cancer and admitted to hospital. As a result of a major operation, she now has a permanent colostomy bag. After only a month Beryl was successfully discharged from hospital to her own home with a reablement package from Leicester City Council and support from the housing association, Midland Heart, to help her regain her independence.

If Beryl had not received this support, she would have been discharged to a more costly care home. The reablement service ensured that Beryl’s home was suitably adapted for her return, which allowed a speedy discharge and avoided the need for institutional care. The support service has assisted her attendance at medical appointments with her GP and monitored the impact of her medication.

Case Study: Mr A, living alone at home

Mr A is a 91 year old man who lives alone with his dog in his house. He is usually independent, is a passionate cook and enjoys socialising. He drives a car. Whilst out walking his dog he suffered a stroke, he fell, causing a fractured neck of femur. He was admitted to hospital and underwent surgery for a hip replacement which meant he had to follow hip precautions for 6 weeks.

The stroke had left him with slight left-sided weakness and problems with concentration, sequencing and attention. He was transferred to a community hospital for rehabilitation where the physiotherapists (PTs) and occupational therapists (OTs) worked on mobility, transfers, personal care following hip precautions, stair climbing and kitchen tasks. Cognitive screens were completed and the OTs targeted their input on helping improve concentration, sequencing and attention.

Mr A was discharged, independently mobile using a frame, independent transferring using equipment and stair climbing with supervision. He was discharged home with 4 calls per day from BEST plus (Bradford Enablement Support Team). Joint sessions between the PTs and OTs and BEST plus were completed to work on the following:

• practising walking safely indoors using 2 walking sticks
• increase hip strength through exercises
• to be safe and independent washing and dressing
• to be safe and independent preparing hot drinks and simple snacks and transport safely using trolley

The above goals were achieved and new goals were set in consultation with Mr A:

• to be safe and independent walking outdoors using 2 sticks
• to be safe and independent bathing using bath lift
• to be safe and independent preparing hot meals from scratch
• to be safe and independent completing shopping using Access bus
• to be safe and independent walking dog short distances using 4 wheeled walker.

After 6 weeks of continued BEST plus input in Mr A’s home, he was able to achieve all of his goals and all Social Services input was withdrawn. Aspects of Mr A’s wellbeing have been promoted including physical wellbeing, social wellbeing, and control over day-to-day life.

Example: Ensuring provision of appropriate services

Young people move from children’s to adult care and support or providing support for situations where young carers become adults

For instance, many young people with learning disabilities leave full-time education at around this age and require new forms of care and support to live independently thereafter. Ensuring that services are made available to meet those needs is better for the quality of life of the young person in question. This could include things such as employment support, training, developing friendships or advice on housing options. It is equally important to think about ways of supporting carers at this time: some parent carers need extra support to juggle caring and paid work after their child leaves full time education. Loss of paid employment can have a significant impact on the carer’s wellbeing and self-esteem as well as a significant impact on the family’s financial circumstances. Similar issues can affect young carers. Taking a whole family approach to care and support planning that sets out a ‘five-day offer’ or appropriate supported living options for a young person, and support for a carer to manage an increased caring role (that allows them to stay in paid work if they wish to do so) can help families manage the transition and save money by avoiding unwanted out-of-county placements.

Case Study: Facilitating the market

Warwickshire Council’s Market Position Statement for Older People identified a significant growth in the number of people living with dementia in the county, coupled with a declining trend in the number of people accessing traditional day services in the previous 4 to 5 years. Day services provide stimulation for the person living with dementia as well as a break for the person’s carer.

Following this the Council undertook a full review of Dementia Community Support. This included evaluating the role of services funded by the NHS and the Council and also those provided directly by the voluntary and community sector.

The Council held an engagement event to establish what customers and carers want dementia Community Support services to look like and deliver. This identified the gaps between supply and demand in more detail and at a local level. The event also gathered information from providers and voluntary and community groups about the challenges of delivering services. Providers identified commissioning models which promote strong and stable service delivery whilst still allowing flexible responses to meet individual needs as particularly useful. As a result of this activity, the Council procured a new service model for Dementia Community Support. The model will include information and advice, community services, building-based respite and specialist support.

Case Study 1: John (eligible)

John is 32 and has been referred by his mother for an assessment, who is concerned for John and his future. John is unemployed and lives with his mother and she is getting to an age where she realises that she might not be able to provide the same level of care and support for her son as she has done so far. John is able to manage his own personal care, but his mother does all the housework for both of them. John feels increasingly isolated and will not leave the house without his mother. It is important to John that he is intellectually stimulated and there is a chess club nearby which he would like to join, but John does not feel confident about this due to his anxiety in social situations.

Adult on the autistic spectrum.

John has severe difficulties socialising and co-operating with other people.

He only has transactional exchanges and cannot maintain eye contact. John knows that others feel uneasy around him, and spends a lot of his time alone. As a result, John is unable to achieve the following outcomes: Developing and maintaining family or other personal relationships and making use of necessary facilities and services in the community.

Impact on wellbeing

John is too anxious to initiate developing friendships on his own although he would like to and he feels lonely and depressed most of the time. His nervousness also affects his ability to take advantage of facilities in the community, which could help him feel less lonely. Feeling anxious and lonely has a significant impact on his wellbeing

Decision: Eligible

Next actions.

John’s local authority thinks John’s needs are eligible. Both John and the local authority agree that the most effective way of meeting John’s needs is to develop his confidence to join the chess club. John uses his personal budget to pay for a support worker to accompany him to an autism social skills group, and to the chess club and to travel with him on the bus to get there.

John’s local authority notes that John’s mother could need support too and offers her a carer’s assessment.

Case study 2: Dave (not eligible)

Dave is 32 and has been referred by his mother for an assessment, who is concerned for Dave and his future. Dave lives with his mother and she is getting to an age where she realises that she might not be able to provide the same level of care and support for her son as she has done so far.

Dave is able to manage his own personal care, but his mother does all the housework for both of them. Dave also works, but would like to get a job that is a better match for his intellectual abilities as his current job does not make the most of his numerical skills. Dave’s social contact is mainly online because he feels more comfortable communicating this way and he spends a lot of time in his room on his computer.

Dave struggles severely in social situations leading to difficulties accessing work and cooperating with other people. He only has transactional exchanges with others and cannot maintain eye contact. Dave knows that others feel uneasy around him and spends a lot of his time alone.

Dave is not in ideal employment, but has access to and is engaged in work. This has some impact on his wellbeing but not to a significant extent.

Dave prefers to socialise with people online. It emerges from conversations with Dave that he has access to those personal relationships that he considers essential. Dave is contributing to society, has contact with others, is in employment and is able to look after himself.

Decision: Not Eligible

Dave has difficulties doing some of the things that many other people would think should be a natural part of daily living and he is unable to participate in recreational activities in a conventional sense. Those aspects of his wellbeing that are affected by the needs caused by his autism are not so significantly affected that Dave’s overall wellbeing is at risk.

The local authority decides that Dave’s needs are not eligible, because they do not have a significant effect on his wellbeing despite his mother’s concerns.

The local authority records Dave’s assessment and sends him a copy. They include information about a local autism support group. Dave’s local authority notes that Dave’s mother could well need support and offers her a carer’s assessment.

Case Study – Carer: Deirdre (not eligible)

Deirdre is 58 and has been caring for her neighbour for the past 6 years. Deirdre has been coping with her caring responsibilities, which include checking in on her neighbour, doing her shopping and cleaning and helping her with the cooking every other day.

Deirdre works 20 hours a week at the local school, and she is also helping her daughter by picking up her grandchild after school. Deirdre’s son is concerned that she is taking on too much and notices that she is tired. Deirdre’s son persuades her to ask the local authority for a carer’s assessment.

Caring responsibilities

Neighbour with COPD.

Deirdre enjoys the variety that her working life and caring role provide. She would like to be able to spend more time with her grandchild in the afternoons, but recognises that there is a balance between doing this and caring for her neighbour. Deirdre’s needs impact on the following outcomes:

• carrying out caring responsibilities the carer has for a child
• engaging in recreational activities

Deirdre’s needs are impacting on a few outcomes.

Deirdre enjoys her caring responsibility for her grandchild and would like more free time. On the other hand, her caring roles are fulfilling so although Deirdre is tired at the end of the day, her local authority does not think her wellbeing is significantly affected.

The local authority decides that Deirdre is not eligible because her wellbeing is not significantly affected.

Next actions

The local authority recognises that Deirdre could do with some advice to help her manage her day so that she can find some time for herself and so she does not get tired. They advise on how she may reduce some of her tasks such as sitting down with her neighbour to order their food shopping online rather than carrying them home. They make contact with a local carers’ organisation and the local authority makes sure Deirdre is able to access it. The organisation is able to provide additional advice.

Case study – Carer: Sam (eligible)

Sam is 38 and cares for his mother who has early-stage dementia. Sam’s mother has telecare, but he still checks in on her daily, and does her shopping, cooking and laundry. Sam is a divorced father of 2 children, who live with him every other week. Sam works fulltime in an IT company and has come forward for an assessment as he is starting to feel unable to cope with his various responsibilities in the weeks when he looks after his children. Sam has made an arrangement with his employer that he can work longer hours on the weeks when the children are with their mother and fewer when he has the children.

Mother with early stage dementia.

Sam wants to spend more time with his children and for instance be able to free up an hour in the afternoon to help them with their homework, so it doesn’t have to be done in the evening when the children are tired. Sam’s needs impact on the following outcomes:

Sam’s responsibilities impact on a few important outcomes. Sam is starting to feel like he is failing as a parent and it affects the relationship he has with his children, his ex-wife, and his mother. He also worries that his ability to stay in work would be in jeopardy unless he receives support. Sam seems quite stressed and anxious.

The local authority decides that Sam’s fluctuating needs are eligible for support, because it perceives that they have a significant impact on his wellbeing. If the local authority supports Sam to maintain his current role, everyone is better off, because Sam can stay in employment, sustain his family relationships and provide security for his mother.

The local authority gives Sam a direct payment which he uses to pay for a care worker to come in for 3 days every other week to check on his mother and make her a meal. This gives Sam more time to spend with his children, doing homework with them and spending some more relaxed time with them.

The local authority directs Sam to a carers’ organisation which provides Sam with information about his rights at work and how to speak to his employers.

Case Study: Stephen who has an acquired brain injury

Stephen sustained a brain injury in a fall; he has completed 6 months in a specialist residential rehabilitation setting and the next step is an assessment of need for his continuing support.

Prior to this, the social worker telephones Stephen’s treating clinician who confirms that because of his brain injury, Stephen lacks insight into the effects this has had on him and he also has difficulty processing lots of information quickly – this is a common symptom of brain injury.

Therefore the social worker decides on an initial short meeting to determine Stephen’s needs and knows her first step will be to evaluate if Stephen has difficulty understanding and therefore being involved in the assessment process. If so, support could come from a carer, family member or friend or Mental Capacity Advocate, as she is aware lack of insight does not necessarily determine lack of capacity.

The social worker notes that Stephen is able to retain information about who she is and why she is meeting with him. He is articulate and can converse well about his plans for the future which includes detailed plans to meet up with friends and return to work again. However, a pre-assessment conversation with his mother, confirms that his friendship group has significantly diminished as his friends find it difficult to understand the differences in his behaviour since his fall and doubts whether he will be able to return to full-time employment. The social worker judges that because Stephen lacks insight into his personal relationships and future plans, he may well also have trouble estimating his true care and support needs. At this point the social worker decides that Stephen would have substantial difficulty in being fully involved in the rest of the assessment process and would therefore benefit from assistance.

Stephen is adamant that he wants to act and make decisions independently of his mother, though he is happy for her to inform the assessment process. The social worker decides that Stephen’s mother would not be an appropriate person under the Care Act to support his involvement in the needs assessment. The social worker talks to Stephen about how an independent advocate could help him make sure his views, beliefs, wishes and aspirations are taken into account in the assessment, and with his agreement, arranges for an independent advocate with specialist brain injury training to support him. The independent advocate meets Stephen but also talks to his mother to get a true picture of Stephen’s current needs and wishes and to ascertain the differences between how Stephen is now and prior to acquiring his brain injury. The social worker carries out the needs assessment with Stephen who is supported by his independent advocate, and with Stephen’s approval, input from his mother.

Case Study: Lynette, who has learning disabilities

Lynette, who has learning disabilities, lives in a care home. A support worker contacted the local authority because another resident, Fred, has come into Lynette’s room late at night shouting on several occasions and most recently was seen pushing her. A safeguarding enquiry is started and the local authority appoint an independent advocate to support Lynette as they are concerned that she cannot express herself easily. When interviewed by the social worker Lynette cannot describe what happened. The social worker and advocate agree that the advocate will help Lynette to communicate how she feels.

The advocate spends time with Lynette. She explains what is happening and communicates with Lynette about different people that she lives with, including using photos, finding out more about her feelings. Lynette appears to be generally happy around the house and when going out, but is very distressed when she sees Fred in person, or even when she sees a picture of him. The advocate makes clear to the Local Authority what Lynette has communicated.

The local authority finds that whilst there is no doubt that Fred did what was reported, he may have done so as a result of his own confusion and distress. They agree a proposal from the registered manager of the care home that alarms will be put on Fred’s door and staffing numbers increased to prevent a recurrence. The local authority agrees to review the situation after some weeks during which time the advocate stays in contact with Lynette in order to understand the impact of this decision on Lynette. The advocate finds that Lynette remains distressed by Fred’s presence. She is concerned that the measures in place are not sufficient and writes this in a report to the local authority detailing what Lynette has communicated about where she lives and about Fred. The local authority agrees to look at what further action may be needed which might include considering whether Lynette and Fred should continue to share accommodation.

The main aspect of wellbeing promoted is protection from abuse and neglect, but also personal dignity and emotional wellbeing. The local authority has also demonstrated its regard for Lynette’s views, wishes, feelings and beliefs.

Case study: Janice, who cares for her mother

Janice is 43 and cares for her mother Sheena who is 72 who has advanced Parkinson’s and increasing cognitive and communication difficulties. Janice cares for her mother in excess of 40 hours per week. Janice gave up work to care for her mother 5 years ago, and using her direct payment Sheena pays her daughter for 8 hours per week for care and support, including helping her with personal care, cooking meals and grocery shopping. Sheena preferred this to paying someone else – she prefers not to have strangers in the house and finds that others often do not understand her needs. As Janice is caring for her mother for many more hours than this, Janice has received a carers assessment and receives her own carers personal budget which she uses for breaks such as her weekly aerobics class which she finds helps her keep in touch with her friends, stay healthy, and deal with stress.

There is no-one else available to act as an appropriate individual to support Sheena in decision making. Both Sheena and Janice would be happy for Janice to take on this role. However, as Janice received a payment, she would not be regarded as an appropriate individual, though the guidance states that good practice should ensure Janice’s views are sought as Sheena has made clear that she wishes this to happen.

Case study: Jacinta, who has moderate learning disabilities

Jacinta is 26 and lives with her mother and father. She has 2 siblings aged 28 and 23 who have left the family home. Jacinta would also like to move to living more independently. Jacinta has moderate learning disabilities and finds it hard to retain information. Jacinta’s parents are very worried that she won’t be able to cope living in her own home and are against her doing so. In these circumstances Jacinta’s parents would not be ‘an appropriate person’ who could effectively represent and support her involvement.

Case study: Brian, who has advanced dementia

Brian is 84 and has advancing dementia. He lives alone in the house he owns. Brian has very limited mobility, has frequent falls and has difficulty in remembering to take medication and to eat. He has periods when he is confused and weighing up the longer term advantages and disadvantages of this care and support options, but has been judged to retain ‘capacity’ Brian says he feels very lonely. Social services are already providing some domiciliary care for which Brian is charged. The local authority is reviewing Brian’s care plan. Brian’s daughter and son in law who have had little contact with Brian over the past few years and will inherit the house are adamant that he can cope at home and does not need to go into a care home. In these circumstances, in addition to a lack of recent contact, there could be a conflict of interests and Brian’s relatives would not be ‘an appropriate person’.

Case study: Kate, who has profound and multiple learning disabilities

Kate has profound and multiple learning disabilities. She doesn’t use formal communication such as words or signs. She communicates using body language and facial expressions. In her assessment, Kate’s independent advocate supports her to show some film of her visiting a local market, enjoying the colours and sounds around her. In this way, Kate is able to show the assessor some of the things that are important to her.

Case Study: Lucille

Case study 1.

Lucille develops a need for a care home placement. She lives alone and is the sole owner of her home. Her home is valued at £165,000, and she has £15,000 in savings. Lucille meets the criteria governing eligibility for a deferred payment.

Case study 2

Lucille’s son Buster has been providing informal care and support to her, and has heard of the deferred payments scheme. When Lucille decides she may benefit from a care home placement, her son suggests they approach her local authority together for information and advice about deferred payment agreements.

Her local authority provides them both with a printed information sheet setting out further details on the authority’s deferred payment scheme, and also provides them with contact details of some national and local services who provide financial information and advice

Lucille is interested in renting her property whilst residing in a care home. The local authority has an existing housing advice service, so signposts Lucille to them for further advice on lettings. The local authority’s standard information sheet also includes information on how her rental income may be used to pay for her care and support.

Case study 3

Lucille decides to secure her deferred payment agreement with her house, which is worth £165,000. The amount of equity available will be the value of the property minus 10%, minus a further £14,250 (the lower capital limit).

£165,000 – £16,500 – £14,250 = £134,250

Therefore, her ‘equity limit’ for the total amount she could defer would consequently be £134,250, which would leave £30,750 in equity in her home.

Case study 4

Lucille identifies a care home placement that meets her care and support needs, costing £540 per week. She has an income provided by her pension of £230 per week. Lucille decides not to rent her home as she intends to sell it within the year.

Based on this provisional estimate of her care costs, Lucille would contribute £86 (230 –144) per week from her income, and her weekly deferral would be £454.

Case study 5

Lucille discusses her care home fees with the local authority. Based on the equity available in her home (£134,250, as set out in Case study 3 above), Lucille could afford her weekly deferral of £454 for around 5 years. Given an average length of stay in a care home care of 19.7 months (source: BUPA 2010, cited in Laing and Buisson 2012/13), the local authority deems her projected care costs to be sustainable.

Lucille enquires as to the cost of a room with a garden view. This would increase her weekly deferral to £525 which she could afford for around four and a half years. The local authority deems this to be sustainable, so agrees to Lucille’s requested top-up.

Case study 6:

For illustrative purposes, we have used an interest rate of 3.5%. After 6 months, Lucille receives her first statement. It confirms she has deferred a total of £13,900, including £110 in interest and £100 in administration fees.

At this point, the local authority revalues her property, and finds its value has increased to £170,000. Based on the amount deferred and her care costs, her equity would afford her just over 4 and a half more years’ care at this price.

Case study: Using discretionary powers to meet needs

Mrs Pascal, who is frail and elderly, was admitted to hospital after a fall. The hospital has established that Mrs Pascal currently has no care and support plan in place and made contact with the local authority to arrange a needs assessment. The local authority assesses that she has eligible needs which will be best met in a care home setting.

The local authority undertakes a financial assessment which finds that Mrs Pascal’s finances are above the limit for financial support from the local authority. The authority provides her with information and advice about her options. Mrs Pascal expresses extreme nervousness about seeking a placement on her own as she has struggled with managing her personal finances in recent times and does not have any family who are able to support her.

After a consultation, both Mrs Pascal and her local authority agree that support with arranging and managing a care placement would be beneficial for her wellbeing and would adequately meet her eligible needs. The authority arranges for Mrs Pascal to meet a trusted brokerage organisation which discusses her needs and arranges a contract with a care home on behalf of Mrs Pascal that she is very happy with.

Case Study: Miss S, who has fluctuating needs

Miss S has Multiple Sclerosis and requires a frame or wheelchair for mobility. Miss S suffers badly with fatigue, but for the majority of the time she feels able to cope with daily life with a small amount of care and support. However, during relapses she has been unable to sit up, walk or transfer, has lost the use of an arm or lost her vision completely. This can last for a few weeks, and happens 2 or 3 times a year; requiring 24 hour support for all daily activities.

In the past, Miss S was hospitalised during relapses as she was unable to cope at home. However, for the past 3 years, she has received a care and support package that include direct payments which allows her to save up one month’s worth of 24 hour care for when she needs it, and this is detailed in the care and support plan.

Miss S can now instantly access the extra support she needs without reassessment and has reassurance that she will be able to put plans in place to cope with any fluctuating needs. She has not been hospitalised since.

Example: Costs of direct payments 1

Andrew has chosen to meet his needs by receiving care and support from a PA. The local authority has a block contract with an agency which has been providing support to Andrew twice per week. Andrew would now like more flexibility in the times at which he receives support in order to better meet his needs by allowing him to undertake other activities and consider employment.

He therefore requests a direct payment so that he can make his own arrangements with another agency, which is happy to arrange a much more flexible and personalised service, providing Andrew with the same care worker on each occasion, and at a time that works best for him.

The cost to the local authority of the block contracted services is £13.50 per hour. However, the more flexible support costs £18 per hour (inclusive of other employment costs). The local authority therefore increases Andrew’s direct payment from £67.50 to £90 per week to allow him to continue to receive the care he requires. The solution through a direct payment delivers better outcomes for Andrew and therefore the additional cost is reasonable and seen as value for money as it may delay future needs developing.

The local authority also agrees it is more efficient for them to allow Andrew to arrange and commission the hours he wants to receive support and handle the invoicing himself.

Example: Costs of direct payments 2

Following George’s assessment of needs, the local authority work out an indicative personal budget of £135 per week, based on their block contract rate of £13.50 per hour as an indication of the potential costs to meet his needs.

During care planning, George states that he has a neighbour that has recently trained to become a personal assistant, and George indicates a preference to use a direct payment to employ the neighbour instead of an arranged service.

The local authority is satisfied that George will be able to manage the direct payment, and that he understands his responsibilities as an employer. George wants to pay the PA above the living wage and has provisionally agreed a hourly rate of £9 per hour. The local authority agrees to this as George agrees that it will meet his needs and outcomes. The final personal budget is adjusted to £110 per week which factors in the new hourly rate, plus an additional allowance for employment responsibilities (PAYE, NI, insurance etc.)

Examples: Using Individual Service Funds

Sally really enjoys dancing and night clubs and she needs support for this. Sally’s ISF arrangement with her provider has given her the flexibility to employ staff that also like to do this, and they are paid time and a half after 11:00pm. The ISF arrangement also allows Sally to convert ‘standard hours’ into ‘enhanced hours’, for example, 6 standard hours equals 4 enhanced hours. Sally can plan late nights out knowing what it ‘costs’ from her allocation of 24 standard hours support, which is calculated from her personal budget.

Brian’s ISF arrangement with his provider allows him to save up and then convert the hours of his support into money to purchase personal trainer time at a local gym. In addition to promoting wellbeing in the areas of emotional and social wellbeing and personal relationships, these arrangements also demonstrate the local authority’s regard for the importance of beginning with the assumption that an individual is best-placed to judge their own wellbeing.

Examples: Flexible use of a carer’s personal budget

Conor has been caring for his wife, who is in a wheelchair with ME and arthritis, for the last 9 years. He does all the cooking, driving and general household duties for their household. Conor received a personal budget which he requested in the form of a direct payment from his local authority for a laptop to enable him to be in more regular contact through Skype with family in the US. This now enables Conor to stay connected with family he cannot afford to fly and see. This family support helps Connor with his ongoing caring role.

Divya has 4 young children and provides care for her father who is nearing the end of his life. Her father receives a direct payment, which he used to pay a family member for a period of time to give his daughter a break from her caring role. Divya received a carers’ direct payment, which she uses for her children to attend summer play schemes so that she get some free time to meet with friends and socialise when the family member providers care to her father. This gives Divya regular breaks from caring which are important to the family unit.

Case Study: Making direct payments support accessible

Abdul is a deafblind man; to communicate he prefers to use Braille, Deafblind Manual and email. He directly employs several staff through direct payments. He receives payroll support from his local direct payments support service. Abdul suggested ways to make direct payments management accessible to him. He communicates with the support service mainly via email but they also use Typetalk.

At the end of the month, Abdul emails the support service with details of the hours that his staff have worked. The support service work out any deductions from pay (such as National Insurance and Income Tax) and email him to tell him how much he should pay the staff via cheque. They then send him pay slips to be given to staff. The envelope that the payslips are sent in has 2 staples in the corner so that he knows who the letter is from. The payslips themselves are labelled in Braille so that he knows which staff to give them to.

Each quarter, the support service tells him how much he needs to pay on behalf of his employees in National Insurance and Income Tax. The service also fills in quarterly Inland Revenue paperwork. At the end of the year, the support service sends relevant information to the council, so that they are aware of how the direct payments are being spent.

Abdul has taken on only some of the responsibilities of employing people; he has delegated some tasks to the support service. Control still remains with Abdul and confidentiality is maintained by using accessible labelling. In terms of the wellbeing principle, the local authority has promoted Abdul’s control over his day-to-day life.

Example: Reduced monitoring

Gina has a stable condition and has been successfully managing her direct payment for over 2 years. The local authority therefore decides to reduce monitoring to the lowest level due to the low perceived risk (while still complying with the required review in the Act and Regulations). Gina is now considered to have the skills and experience to manage on her own unless the local authority request otherwise or information suggested otherwise comes to the attention of the local authority.

Example: Direct payment to pay a family member for administration support

David has been using direct payments to meet his needs for some time, and has used private agencies to provide payroll and administration support, funded by a one-off annual payment as part of his personal budget allocation. David’s wife, Gill provides care for him and is increasingly becoming more hands-on in arranging multiple PAs to visit and other administrative tasks as David’s care needs have begun to fluctuate.

They jointly approach the local authority to request that Gill undertake the administration support instead of the agency as they want to take complete control of the payment and care arrangements so that they can best meet David’s fluctuating needs and ensure that appropriate care is organized.

The local authority considers that Gill would be able to manage this aspect of the payment, and jointly revises the care plan to detail the aspects of the payment, and what services Gill will undertake to the agreement of all concerned. The personal budget is also revised accordingly.

The family now has complete control of the payment, Gill is reimbursed for her time in supporting David with his direct payment and the local authority is able to make a saving in the one-off support allocation as there are no provider overheads to pay. In promoting David’s wellbeing, the local authority has demonstrated regard for the balance between promoting an individual’s wellbeing and that of people who are involved in caring for them. It has given Gill increased control in a way that David is comfortable with and supports.

Example: Direct payment paid to a family member where necessary

James has severe learning difficulties as well as various physical disabilities. He has serious trust issues and a unique way of communicating that only his family, through years of care as a child, can understand. The local authority agrees that using a direct payment to pay for care from his parents is necessary as it is the best way to meet James’s needs and outcomes.

Example: Direct payments for short-term residential care

Mrs. H has one week in a care home every 6 weeks. Because each week in a care home is more than 4 weeks a part, they are not added together. The cumulative total is only one week and the 4-week limit is never reached.

Peter has 3 weeks in a care home, 2 weeks at home and then another week in a care home. The 2 episodes of time in a care home are less than 4 weeks apart and so they are added together making 4 weeks in total. Peter cannot use his direct payments to purchase any more care home services within a 12-month period.

Example: Using a direct payment whilst in hospital

Peter is deafblind and is required to stay in hospital for an operation. Whilst the hospital pays for an interpreter for the medical interventions, Peter needs additional support to be able to move around the ward, and to communicate informally with staff and his family. The local authority and the NHS Trust agree that Peter’s communicator guide continues to support him in hospital, and is paid for via the direct payment, as it was when Peter was at home. Personal and medical care is provided by NHS staff but Peter’s communicator guide is on hand to provide specialist communication and guiding support to make his hospital stay is as comfortable as possible.

Example: Local authority provided service

Graham has a direct payment for the full amount of his personal budget allowance. He decides to use a local authority run day service on an infrequent basis and requests to pay for it with his direct payment so that he retains flexibility about when he attends. The local authority service is able to agree to this request and has systems already in place to take payments as self-funders often use the service. The authority advise Graham that if he wishes to use the day service on a frequent basis (i.e. once a week) it would be better to provide the service to him direct, and to reduce the direct payment amount accordingly.

Review of Care and Support Plans

Example: accepting a renewal request.

A local authority receives an email from a relative of an older person receiving care and support at home. The email provides details that the older person’s condition is deteriorating and supplies evidence of recent visits to the GP. The local authority therefore decides to review their care and support plan to ensure that it continues to meet their needs.

Example: Declining a renewal request

A local authority receives a phone call from Mr X. He is angry as he feels that he has needs that have not been identified in his care plan and requests a review of the plan. The authority has on a separate recent occasion reviewed his plan, when it came to the conclusion that no revision was necessary and informed Mr X of the decision and the reasons for it. Therefore, the local authority declines the request in this case and provides a written explanation to Mr X, informing him of an anticipated date of when it will be formally reviewing the plan together with information on its complaints procedure.

Case study: Two brothers with mild learning disabilities

Two brothers with mild learning disabilities lived in their family home, where they had remained following the death of their parents some time previously. Large amounts of rubbish had accumulated both in the garden and inside the house, with cleanliness and self-neglect also an issue. They had been targeted by fraudsters, resulting in criminal investigation and conviction of those responsible, but the brothers had refused subsequent services from adult social care and their case had been closed.

They had, however, had a good relationship with their social worker, and as concerns about their health and wellbeing continued it was decided that the social worker would maintain contact, calling in every couple of weeks to see how they were, and offer any help needed, on their terms. After almost a year, through the gradual building of trust and understanding, the brothers asked to be considered for supported housing; with the social worker’s help they improved the state of their house enough to sell it, and moved to a living environment in which practical support could be provided.

Case study: Mrs B, who has dementia and there are concerns about her daughter who has lasting power of attorney

Mrs B is an 88 year old woman with dementia who was admitted to a care home from hospital following a fall. Mrs B appointed her only daughter G, to act for her under a Lasting Power of Attorney in relation to her property and financial affairs.

Mrs B’s former home was sold and she became liable to pay the full fees of her care home. Mrs B’s daughter failed to pay the fees and arrears built up, until the home made a referral to the local authority, which in turn alerted the Office of the Public Guardian (OPG).

The OPG carried out an investigation and discovered that G was not providing her mother with any money for clothing or toiletries, which were being provided by the home from its own stocks. A visit and discussion with Mrs B revealed that she was unable to participate in any activities or outings arranged by the home, which she dearly wished to do. Her room was bare of any personal effects and she had limited stocks of underwear and nightwear.

The Police were alerted and interviewed G, who admitted using the proceeds of the mother’s house for her own benefit. The OPG applied to the Court of Protection for suspension of the power of attorney and the appointment of a deputy, who was able to seek recovery of funds and ensure Mrs B’s needs were met.

Case study: Mr A, who is socially isolated

Mr A is in his 40s, and lives in a housing association flat, with little family contact. His mental health is relatively stable, following a previous period of hospitalisation and he has visits from a mental health support worker.

He rarely goes out, but he allows people into his accommodation because of his loneliness. The police were alerted by Mr A’s neighbours to several domestic disturbances. His accommodation had been targeted by a number of local people and he had become subjected to verbal, financial and sometime physical abuse. Although Mr A initially insisted they were his friends, he did indicate he was frightened; he attended a case conference with representatives from adult social care, mental health services and the police, from which emerged a plan to strengthen his own self-protective ability as well as to deal with the present abuse.

Mr A has made different arrangements for managing his money so that he does not accumulate large sums at home. A community-based visiting service has been engaged to keep him company through visits to his home, and with time his support worker aims to help get involved in social activities that will bring more positive contacts to allay the loneliness that Mr A sees as his main challenge.

Case Study: Mrs D, who is a carer for her husband and who fears for her safety

Mrs D lives with her husband, B. B has a long term brain injury which affects his mood, behaviour and his ability to manage close family relationships. This has often led to him shouting and hitting out at his wife, who is also his main informal carer. Mrs D told a professional who was involved in supporting her that she was becoming increasingly frightened by B’s physical and verbal outbursts and at times feared for her personal safety.

Other family members were unaware of the extent of the harm and that Mrs D was exhausted and considering leaving the situation. The local authority became involved.

The situation presented significant personal risk to Mrs D but there was also a risk of fragmenting relationships if the local authority staff were not sensitive to the needs of the whole family. The practitioner, under supervision from her social work manager invested time in meeting with Mrs D to explore her preferences around managing her safety and how information about the situation would be communicated with the wider family and with B. This presented dilemmas around balancing the local authority’s duty of care towards

Mrs D with her wishes to remain in the situation with B. Placing emphasis on the latter inevitably meant that Mrs D would not be entirely free from the risk of harm but allowed the practitioner to explore help and support options which would enable Mrs D to manage and sustain her safety at a level which was acceptable to her.

The practitioner received regular supervision to allow time to reflect on the support being offered and to ensure that it was ‘person centred’. The outcome for Mrs D was that she was able to continue to care for B by working in partnership with the local authority. The practitioner offered advice about how to safely access help in an emergency and helped her to develop strategies to manage her own safety – this included staff building rapport with B, building on his strengths and desire to participate in social activities outside the family home. The effect of this was that some of the trigger points of him being at home with his wife for sustained periods during the day were reduced because he was there less.

Mrs D also had a number of pre-existing support avenues, including counselling and a good relationship with her son and her friends. The situation will be reviewed regularly with Mrs D but for the time being she feels much more able to manage.

Case Study: Miss P, for whom there are concerns she is being sexually, physically and financially abused

Miss P’s mental health social worker became concerned when she had received reports that 2 of Miss P’s associates were visiting more regularly and sometimes staying over at her flat. Miss P was being coerced into prostitution and reportedly being physically assaulted by one of the men visiting her flat. There was also concern that she was being financially exploited. Miss P’s lack of understanding of how to protect herself when livng alone was exacerbated by her mental health needs and consequent inability to set safe boundaries with the people she was associating with.

The social worker recognised that the most appropriate way to enable Miss P to manage the risk of harm was to involve Miss P’s family, which she agreed to, and other professionals to develop and coordinate a plan which would enable her to continue living independently but provide a safety net for when the risk of harm became heightened. Guided initially by Miss P’s wish for the 2 men to stay away from her, the social worker initiated a planning meeting between supportive family members and other professionals such as the police, domestic violence workers, support workers and housing officers. Although Miss P herself felt unable to attend the planning meeting, her social worker ensured that her views were included and helped guide the plan. The meeting allowed family and professionals to work in partnership, to openly share information about the risks and to plan what support Miss P needed to safely maintain her independence.

Tasks were divided between the police, family members and specialist support workers. The social worker had a role in ensuring that the plan was coordinated properly and that Miss P was fully aware of everyone’s role. Miss P’s family were crucial to the success of the plan as they had always supported her and were able to advocate for her needs.

They also had a trusting relationship with her and were able to notify the police and other professionals if they thought that the risk to Miss P was increasing. The police played an active role in monitoring and preventing criminal activity towards Miss P and ensured that they kept all of the other professionals and family up to date with what was happening. Miss P is working with a domestic violence specialist to help her develop personal strategies to keep safer and her support worker is helping her to build resilience through community support and activities.

Case study: Miss Y, for whom there are concerns she is being sexually abused along with other young people and adults

Miss Y is a young woman with a learning disability with limited support from her family and was not engaged with health and social care services. Miss Y was befriended by an individual who took her to parties where she was given drugs and alcohol and forced to have sex with different men. Sometimes she would be given money or gifts in return for having sex with the men.

Miss Y disclosed this to a social worker and it was discovered that there were a number of young people and vulnerable adults who were being sexually exploited by multiple perpetrators. Miss Y lacked mental capacity in order to be able to consent to having sex, as well as in relation to her accommodation, finances or personal safety.

The perpetrators sought out Miss Y and others because of their perceived vulnerability – whether that was because of their isolated situation and social circumstances coupled with age, disability, mental illness, or their previous history as a victim of abuse. The process to safeguard Miss Y involved a coordinated response between the police, social care, health and voluntary and community sector organisations.

This included the police investigating the perpetrators for rape, sexual assault, trafficking and drug offences. The Court of Protection and Deprivation of Liberty Safeguards were also used initially to safeguard Miss Y.

Case study: Mr P, for whom there are concerns his brother is abusing him

Mr P has mild learning disabilities. The safeguarding concern was financial and other abuse and neglect by his brother, with whom he lived. His support worker had noticed that Mr P had begun to appear agitated and anxious, that he looked increasingly unkempt and that he was often without money; then he suddenly stopped attending his day centre.

When the support worker and the safeguarding officer followed up, Mr P told them that at times he was not allowed out at all by his brother and was confined to his bedroom. He was only allowed to use the bathroom when his brother said he could, and often didn’t get enough to eat. He was also very worried because his bank card no longer worked, and he had no money, so couldn’t buy food for himself.

Mr P consented to move to temporary accommodation, and a case conference was held, which he attended with an advocate. At his request a move to a supported living flat was arranged and his belongings were retrieved from his brother’s property. His bank account had been emptied by his brother, so he has made new arrangements for his money.

The police are investigating both the financial abuse and the harm Mr P suffered at his brother’s hands. He has begun to talk about his experiences and is gradually regaining his confidence.

Case study: Mr A, for whom there are concerns he is being exploited

Mr A is 24 and has autism and a mild learning disability. He is a very friendly and sociable young man, who is prone to waving and talking to most people he comes across and who sees everyone as a potential friend. However, he struggles to read the intentions of others and is easily led astray and manipulated.

He lives next door to a pub, where he knows the staff and the regulars. He also lives close to his GP and is able to access his most frequently visited places. He does, however, like to walk into town to talk to people he meets out and about. On such occasions he has been repeatedly tricked into stealing items from a newsagent by a group of teenagers and given large amounts of money away to strangers he strikes up conversations with. Due to his previous experiences, Mr A was identified during a needs assessment as being at risk of abuse and neglect and a safeguarding enquiry was triggered.

The council found that, although Mr A was not currently experiencing abuse or neglect, he remained highly vulnerable to abuse due to his being well-known in his area as someone as easy to manipulate.

To assure his safety in the future, a safeguarding plan was agreed between Mr A and a social worker. This focused on developing his social skills and understanding of relationships and boundaries and the social worker worked with Mr A to consider various support options such as having a buddy or circle of support.

The social worker put Mr A in touch with an autism social group which provided sessions on skills for staying safe. As the group was based in town, Mr A’s plan also included a support worker to accompany him. After the first 5 sessions Mr A was able to attend himself but continued to meet with his support worker on a monthly basis as part of the risk management strategy set out in his safeguarding plan.

Case study: Mr M, for whom there are concerns he is self-neglecting

Recent research has identified ways of working that can have positive outcomes for those who self-neglect.

Mr M, in his 70s, lives in an upper-floor council flat, and had hoarded over many years: his own possessions, items inherited from his family home, and materials he had collected from skips and building sites in case they came in useful. The material was piled from floor to ceiling in every room, and Mr M lived in a burrow tunnelled through the middle, with no lighting or heating, apart from a gas stove. Finally, after years of hiding in privacy, Mr M had realised that work being carried out on the building would lead to his living conditions being discovered. Mr M himself recounted how hard it had been for him to invite access to his home, how ashamed and scared he was, and how important his hoard was to him, having learnt as a child of the war never to waste anything.

Through working closely together, Mr M, his support worker and experienced contractors have been able gradually to remove from his flat a very large volume of hoarded material and bring improvements to his home environment. It has taken time and patience, courage and faith, and a strong relationship based on trust. The worker has not judged Mr M, and has worked at his pace, positively affirming his progress. Both Mr M and his support worker acknowledge his low self-esteem, and have connected with his doctor and mental health services. The worker has recognised the need to replace what Mr M is giving up, and has encouraged activities that reflect his interests. Mr M has valued the worker’s honesty, kindness and sensitivity, his ability to listen and the respect and reciprocity within their relationship.

Example: Partnership working in relation to domestic abuse

A SAB has worked with the domestic abuse board to develop a Multi-Agency Risk Assessment Conference (MARAC) e-learning package and to commission training in line with the domestic abuse training standards, such as: domestic abuse basic awareness; domestic abuse enhanced awareness; Domestic Abuse, Stalking and Harassment (DASH) and; MARAC awareness.

Case study: Ms W, who has made complaints about being the victim of anti-social behaviour

At the age of 72 years, Ms W, although registered disabled, was an active member in her community often seen helping at community events and visiting the local shops and swimming pool. Ms W had a fall in her home which left her lacking in confidence and fearful that she would fall again. As the winter approached, Ms W spent more time alone at home only venturing to the corner shop to buy groceries. As time passed her house came in disrepair and unhygienic as local youths began throw rubbish, including dog faeces into her front garden.

Within a 5 month period Ms W made 7 complaints to the police about anti-social behaviour in her local area, and on 2 occasions was the victim of criminal damage to the front of her house, where her wheelchair accessibility ramp has been painted by graffiti. The police made a referral to social services. As a result, Ms W was placed on a waiting list for a support service.

Four weeks after she was last seen Ms W committed suicide. A Serious Case Review (SCR) was convened according to the local policy that stated ‘the purpose of an SCR is not to reinvestigate or to apportion blame, but to establish whether there are lessons to be learnt from the circumstances of the case about the way in which local professionals and agencies work together to safeguard vulnerable adults. The published report and recommendations which followed demonstrated the lessons from this case. The resultant action plan included:

• strengthened relationships and information sharing between police officers, health and the local authority
• clear lines of reporting and joint working arrangements with the community safety partnerships
• a robust multi-agency training plan
• a targeted community programme to address anti-social behaviour
• the development of a ‘people’s panel’ as a sub group to the Safeguarding Adults Board which includes people who access services, carers and voluntary groups
• the development of a ‘stay safe’ programme involving local shops where adults at risk of abuse may report their concerns to a trusted member if their community

Example: Leaflets for carers

Camden has developed a leaflet for carers about the harm they may experience when caring for a relative or friend and the harm they may cause. This was developed in partnership with carers’ organisations and carers themselves, and remains a partnership owned publication.

Case study: A care home resident who is unhappy with the standards of care

A resident at a local care home told the district nurse that staff members spoke disrespectfully to her and that there were episodes of her waiting a long time for the call bell to be answered when wanting to use the commode. The resident wished to leave the home as she was very unhappy with the treatment she was receiving, and was regularly distressed and tearful.

The resident was reluctant for a formal safeguarding enquiry to take place, but did agree that the issues could be discussed with the manager. The district nurse negotiated some actions with the manager to promote good practice and address the issues that had been raised. When the district nurse reviewed the situation; the manager at the care home had dealt with the issues appropriately and devised an action plan. The resident stated that she was now happy at the care home – staff ‘couldn’t be more helpful’ – and she no longer wanted to move.

Case study: Promoting the integration of housing, health and social care across Leicestershire

District Councils in Leicestershire have taken a strategic approach to working with county wide providers on priority issues, including housing, health and wellbeing. A District Chief Executive leads across the 7 District Councils working with a network of senior managers in each individual council. This has built the influence and credibility of District Councils with health and social care leaders who now have an increasing understanding of the vital role housing and housing based services play in the delivery of better outcomes for vulnerable people. The Housing Offer to Health in Leicestershire is built into the County`s Better Care Fund priorities and work is underway across health, social care and housing in the following key areas:

Housing’s Hospital to Home discharge pathway: looking to place housing options expertise within the day-day discharge assessment and planning work of both acute and mental health providers so that the planning and decisions around an individual’s hospital discharge includes early consideration, and actioning of appropriate and supportive housing options. * establishing an integrated service to provide practical support to people in their own homes across all tenures so that aids, equipment, adaptations, handy person services and energy efficiency interventions are available and delivered quickly. Through this we hope to reduce the time taken to provide practical help to individual people with care and support needs, reduce process costs for services paid for through the public purse and support vulnerable people to access the low level practical support that helps them remain independently at home.

Establishing a locality based approach to prevention and housing based support which includes Local Area Co-ordination, Timebanking and delivery of low level support services to vulnerable older people through a mixture of community volunteers and multi-skilled workers.

The district councils are therefore promoting wellbeing in the area of suitability of accommodation at population level, providing a basis for promoting individual wellbeing via transfers of care and universal preventative services.

Case study: Promoting the integration and social care with regards to carers support in Torbay and Southern Devon Health and Care NHS Trust

Torbay, a ‘Care Trust’ or organisation responsible for health and social takes a ‘whole system’ approach to the identification and support of carers. They worked with clinicians in primary care and the acute trust to develop an evidence base to show the positive impact early support and access to services has on carers’ health and wellbeing. This led to recognition that carer support is the joint responsibility of primary and acute health services and social care as well as an understanding that carers can be a ‘reluctant audience’ and may not identify themselves until in crisis.

Torbay has used joint CQUINs (commissioning for quality and innovation payments) to drive change. They developed a model founded on having Carers Support Workers at key points in the carer’s journey in all GP practices, in the Acute Hospital Discharge team and in specialist community teams such as Mental Health and Substance Misuse. These workers provide easy access to support, advice to other practitioners, and signpost carers through the system. They also target key staff groups for development; for example the 2013/14 focus has been on training and encouraging district and community nurses to identify and signpost carers to support. This has significantly increased referrals as well as raised awareness.

A pathway exercise was undertaken with staff and carers to map the carer’s journey through the whole system and the points at which engagement did, or could, happen. This has led to changes such as Carer Contact Cards, which includes key information on where carers can get support, in all discharge folders and a new Carers Policy for Torbay Hospital.

Providing simple, easy to access services for all carers such as Signpost’s information service, a Torbay carers’ register and carer education programmes, that are not subject to eligibility criteria and has brought carers into support much earlier therefore reducing crises.

Case study: Putting health back into housing

The Gloucestershire Affordable Housing Landlords’ Forum (GAHLF), comprising of the 7 leading local housing providers in the county, have set out an ‘offer’ to the Health and Wellbeing Board that demonstrates how each is working to improve the quality of life of their residents, the neighbourhoods and wider communities, by investing in new homes, supporting independent living, developing the community and supporting older and vulnerable people.

£12 million is being invested, by Stroud District Council, over 5 years, to improve the quality of housing stock and reduce fuel poverty for tenants. Stroud has been upgrading the heating supply in properties not currently served by mains gas. Many properties have electric storage heating which does not give the same level of control and is more expensive than gas or renewable energy. Dryleaze Court is a Supported Housing unit where 5 properties have had mains gas installed this year. At the same time, the team has also installed uPVC privacy panels, replaced porches with insulated cavity brick walls and fitted new double-glazed windows. The works have improved tenants’ quality of life, helping them to live more comfortably and reduce their fuel bills. All in all, over the 3 years ending March 2013, GAHLF has improved over 14,900 homes, with an estimated savings to the NHS of around £1.4 million per annum.

• Putting Health Back into Housing
• Case Study – Commissioning Advice Services in Portsmouth

Transition to Adult Care and Support

Case study: when a transition assessment is of ‘significant benefit’.

Isabelle is 15 years old with complex needs. She attends a residential school on a 38-week basis funded by education and social services. Care and support is currently required on the weekends and in holidays. Isabelle’s parents have approached the local authority requesting a transition assessment around the time of her 16th birthday. Initially the local authority’s reaction is that this is too soon to be of significant benefit. Since the support from school can continue until she is 19, they feel transition will be straightforward as adult services simply need to begin funding the package which is already in place.

However, when they talk in more detail to the school and the parents they realise that when Isabelle leaves school at 19 it will not be appropriate for her to live with her parents and she will require substantial supported living support and a college placement. Due to the nature of Isabelle’s needs, she will need a lengthy transition in order to get used to new staff, a new environment and a new educational setting. The college has also indicated that that they will need up to a year to plan for her start.

It is therefore of significant benefit for the transition assessment to take place around the age of 16, looking at both the funding for support from age 18 – 19 and the longer-term options. Once the assessment has identified the support Isabelle will be entitled to on leaving school, the planning process can begin and suitable support can be put in place by the time she leaves school.

If a transition assessment were to take place later, the local authority would be at risk of not promoting wellbeing in the areas of family relationships (because Isabelle could temporarily need to live with her parents while solutions are found at the last minute, which would not be appropriate) and control over day-to-day life (because Isabelle would very likely not have the same range of choices if planning and preparation were to be truncated).

Case study: Person centred transition planning, involving multiple agencies

To ensure that Matthew was fully involved in the transition process, 4 planning sessions were held with his Transition Officer and facilitated by an outside agency that had expertise in person-centred planning. Matthew’s aspirations were to live independently in his own home and to have paid employment in an office.

It was vital to Matthew’s preparation for adulthood that he was given information about what support he would be eligible for after 18 in order to plan for sustainable employment and to ensure the appropriate support would be available to enable Matthew to live independently. This involved considering:

• whether he would still have a Personal Budget
• support with travel training
• job coaching
• support to live independently, developing appropriate housing options locally

Matthew and his family worked with the local authority and the housing association to identify a suitable home for him. The housing association then bought the house for Matthew and another young man to live in, with a carer. This whole process took over 3 years. Early, person-centred planning has been crucial to Matthew achieving his goals. Without adequate transition planning, the local authority would not have been able to promote Matthew’s wellbeing in terms of participation in work, suitability of accommodation, or control over day-to-day life.

Case Study: Delegation of local authority care and support functions

A local authority has agreed a contract with a local user led organisation (ULO), to carry out specialist needs assessments and care and support planning for people with learning disabilities. The expertise provided by the ULO allows for better interaction with the people undergoing assessments and a better understanding of their needs, resulting in more accurate and person-centred needs assessments.

The ULO’s specialist knowledge of local facilities, befriending groups and employment schemes allows them to broker more personalised care and support planning which allows the person’s needs to be met in a number of imaginative ways which support local people with learning disabilities to live independently, improves their wellbeing – and often with less costly care packages.

As part of the delegation, the local authority builds a good working relationship with the ULO, as it needs to monitor how the needs of the adults to whom they have a responsibility are being met. The local authority realises that the ULO has had some difficulty in advising its clients on employment laws for people who are employing personal assistants with their direct payments. The local authority has much experience of providing this type of advice to people with disabilities, and provides support to the ULO to help with this aspect of function.

Through the delegation, the local authority has been able to build its knowledge of specialist resources in its area that it did not previously know about, and has been able to learn about new practices in carrying out assessments and planning care and support packages more imaginatively and efficiently – learning which it is able to apply to other groups of people with care and support needs.

The more personalised assessment and care planning has resulted in fewer reviews of care plans. More people with learning disabilities in the area are supported to live independently for longer which results in better outcomes for them while simultaneously reducing costs to the local authority. The local authority has thus been able to use effective delegation as a way of promoting the wellbeing of its local population.

Case study: Persons of no settled residence

David is 20 years old and has a physical disability together with mild learning disabilities. Until 4 months ago, he lived with his family in local authority A. However, his family relationship broke down and his parents asked him to leave their home for good. They have since changed the locks on their house.

He sought help from local authority A and was placed in a care home for young people with disabilities located in local authority A. This placement was made on a short-term basis until a more permanent solution for David could be found in a supported living type accommodation with his own tenancy. However, David chose to leave the care home after a few weeks and stayed with friends in local authority B for a short period. However, he has recently presented at local authority B seeking accommodation on the basis that he is a destitute adult who is in need of care and attention. Local authority B provides David with care home accommodation but falls into dispute with local authority A over his place of ordinary residence.

Local authority B contends that David remains ordinarily resident in local authority A, given his previous residence there and his recent discharge from their care. Local authority A argues that David has acquired a new ordinary residence in local authority B.

As David is being provided with a type of accommodation by local authority B, as specified by the regulations, S39 (1) (a) applies. Therefore, he is deemed to continue to be ordinarily resident in the area in which he was ordinarily resident immediately before the care home accommodation was provided for him. The day before David presented at local authority B he was staying with friends in that local authority area. His friends made it clear that this was a short-term temporary arrangement, to prevent him becoming homeless upon leaving the care home in local authority A. He had not built up any community ties within the area of local authority B; nor had he chosen to reside in local authority B voluntarily and for settled purposes. Therefore, under the [Shah] test, David has not acquired an ordinary residence in local authority B.

However, nor does it appear that David has retained his ordinary residence in local authority A where he lived with his parents. He left the care home in local authority A intentionally and has no settled residence to which he can return. As David appears not to have been ordinarily resident in either local authority A or local authority B immediately before he presented at local authority B and was provided with accommodation, it is decided that he is a person of no settled residence. Section 18 of the Care Act 2014 makes clear that local authorities have a duty to meet the needs of someone, if they are present in its area but of no settled residence. Local authority B is therefore the authority responsible for David’s eligible care and support needs and can therefore treat David as if he were ordinarily resident in their area and provide him with accommodation.

Case Study: Frances, who is disabled and lives alone

Frances is a 78 year old lady with severe arthritis who lives alone in south London. Frances slips whilst walking down her stairs and breaks a wrist and leg. Frances is admitted to a local general hospital. At the hospital, Francis is visited by Ray, a local authority social services member, who conducts a needs assessment. During the assessment, Ray asks Frances about her support network – does she have any friends and/or family nearby? Frances says her best friend passed away last year. She has one son but he lives outside Edinburgh with his young family.

When Ray re-visits Frances, he informs her that she is eligible for care and support. He also says, that whilst a number of options exist, it is Ray’s opinion, that Frances’s severe arthritis now means she is unable to live independently and that a care home may be the best way forward. Frances agrees. She expresses relief that she will not have to return home alone but is anxious at moving to an unfamiliar setting.

Ray asks Frances whether she has considered moving to be nearer her son. Frances says yes, but has previously dismissed the idea because she didn’t want to get in the way. Ray asks whether a move to a care home near her son might be attractive. The local authority would take care of the arrangements and her son and his family could visit more easily. Frances is keen to take this further. Ray asks Frances’s permission to contact her son. Frances agrees.

Ray contacts Frances’s son, Ian. Ian says he wishes he could visit Frances more often but with 2 young children and a busy job it is hard to do so. Ian phones every few days and says he knows Frances has been feeling down since her friend passed away. Ian’s house is too small to accommodate Frances and is empty all day so no-one would be available to support Frances. Ray explains the possibility of a cross-border placement for Frances into a care home close to Ian. Ian says he would find this very attractive. Frances has always enjoyed her visits to Scotland before, especially seeing her grandchildren. Ian agrees to talk to Frances about the possibility.

Ray hears from Frances the next day – she and her son would like to go forward with a cross-border placement. Ray researches possible care homes close to Ian, taking Frances’s preferences into account and selects 3 possibilities which Frances, in conference with Ian, pick from. The preferred home is in a suburban area similar to that in which Frances currently lives and close to a church – Frances is a regular church-goer. Ray contacts the care home provider and confirms availability and fees and informs the provider that this would be a cross-border placement.

Ray phones his opposite number, Rhian, in the Edinburgh local authority where the care home is based. Ray informs Rhian that it appears likely a cross-border placement will take place. Rhian says she knows the care home in question and the standard of care is good based on inspectorate findings. Ray thanks her and follows up in writing with the provisional date when the placement will occur and details of the care provider identified. Over the next week, arrangements for the placement are firmed up. Ray draws up an agreement as to how Frances’s care will be managed on a day-to-day basis with assistance from Rhian’s authority. Rhian has agreed that her local authority will take on several roles including providing assistance and information so that the local authority can fulfil its responsibilities. Rhian’s team agree to help to carry out regular care reviews by gathering and reporting information back to Ray’s local authority as ultimate decision-maker. Rhian also agrees that her local authority will provide support in an emergency situation.

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• Volume 21, Issue 1
• What is a case study?
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• Roberta Heale 1 ,
• Alison Twycross 2
• 1 School of Nursing , Laurentian University , Sudbury , Ontario , Canada
• 2 School of Health and Social Care , London South Bank University , London , UK
• Correspondence to Dr Roberta Heale, School of Nursing, Laurentian University, Sudbury, ON P3E2C6, Canada; rheale{at}laurentian.ca

https://doi.org/10.1136/eb-2017-102845

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What is it?

Case study is a research methodology, typically seen in social and life sciences. There is no one definition of case study research. 1 However, very simply… ‘a case study can be defined as an intensive study about a person, a group of people or a unit, which is aimed to generalize over several units’. 1 A case study has also been described as an intensive, systematic investigation of a single individual, group, community or some other unit in which the researcher examines in-depth data relating to several variables. 2

Often there are several similar cases to consider such as educational or social service programmes that are delivered from a number of locations. Although similar, they are complex and have unique features. In these circumstances, the evaluation of several, similar cases will provide a better answer to a research question than if only one case is examined, hence the multiple-case study. Stake asserts that the cases are grouped and viewed as one entity, called the quintain . 6  ‘We study what is similar and different about the cases to understand the quintain better’. 6

The steps when using case study methodology are the same as for other types of research. 6 The first step is defining the single case or identifying a group of similar cases that can then be incorporated into a multiple-case study. A search to determine what is known about the case(s) is typically conducted. This may include a review of the literature, grey literature, media, reports and more, which serves to establish a basic understanding of the cases and informs the development of research questions. Data in case studies are often, but not exclusively, qualitative in nature. In multiple-case studies, analysis within cases and across cases is conducted. Themes arise from the analyses and assertions about the cases as a whole, or the quintain, emerge. 6

Benefits and limitations of case studies

If a researcher wants to study a specific phenomenon arising from a particular entity, then a single-case study is warranted and will allow for a in-depth understanding of the single phenomenon and, as discussed above, would involve collecting several different types of data. This is illustrated in example 1 below.

Using a multiple-case research study allows for a more in-depth understanding of the cases as a unit, through comparison of similarities and differences of the individual cases embedded within the quintain. Evidence arising from multiple-case studies is often stronger and more reliable than from single-case research. Multiple-case studies allow for more comprehensive exploration of research questions and theory development. 6

Despite the advantages of case studies, there are limitations. The sheer volume of data is difficult to organise and data analysis and integration strategies need to be carefully thought through. There is also sometimes a temptation to veer away from the research focus. 2 Reporting of findings from multiple-case research studies is also challenging at times, 1 particularly in relation to the word limits for some journal papers.

Examples of case studies

Example 1: nurses’ paediatric pain management practices.

One of the authors of this paper (AT) has used a case study approach to explore nurses’ paediatric pain management practices. This involved collecting several datasets:

Observational data to gain a picture about actual pain management practices.

Questionnaire data about nurses’ knowledge about paediatric pain management practices and how well they felt they managed pain in children.

Questionnaire data about how critical nurses perceived pain management tasks to be.

These datasets were analysed separately and then compared 7–9 and demonstrated that nurses’ level of theoretical did not impact on the quality of their pain management practices. 7 Nor did individual nurse’s perceptions of how critical a task was effect the likelihood of them carrying out this task in practice. 8 There was also a difference in self-reported and observed practices 9 ; actual (observed) practices did not confirm to best practice guidelines, whereas self-reported practices tended to.

Example 2: quality of care for complex patients at Nurse Practitioner-Led Clinics (NPLCs)

The other author of this paper (RH) has conducted a multiple-case study to determine the quality of care for patients with complex clinical presentations in NPLCs in Ontario, Canada. 10 Five NPLCs served as individual cases that, together, represented the quatrain. Three types of data were collected including:

Review of documentation related to the NPLC model (media, annual reports, research articles, grey literature and regulatory legislation).

Interviews with nurse practitioners (NPs) practising at the five NPLCs to determine their perceptions of the impact of the NPLC model on the quality of care provided to patients with multimorbidity.

Chart audits conducted at the five NPLCs to determine the extent to which evidence-based guidelines were followed for patients with diabetes and at least one other chronic condition.

The three sources of data collected from the five NPLCs were analysed and themes arose related to the quality of care for complex patients at NPLCs. The multiple-case study confirmed that nurse practitioners are the primary care providers at the NPLCs, and this positively impacts the quality of care for patients with multimorbidity. Healthcare policy, such as lack of an increase in salary for NPs for 10 years, has resulted in issues in recruitment and retention of NPs at NPLCs. This, along with insufficient resources in the communities where NPLCs are located and high patient vulnerability at NPLCs, have a negative impact on the quality of care. 10

These examples illustrate how collecting data about a single case or multiple cases helps us to better understand the phenomenon in question. Case study methodology serves to provide a framework for evaluation and analysis of complex issues. It shines a light on the holistic nature of nursing practice and offers a perspective that informs improved patient care.

• Gustafsson J
• Calanzaro M
• Sandelowski M

Competing interests None declared.

Provenance and peer review Commissioned; internally peer reviewed.

Read the full text or download the PDF:

Coercive Control

Case study 5: Betty

Download the whole case study as a PDF file

Betty and Godfrey are an older married couple. Godfrey received a diagnosis of dementia 18 months ago, and has been attending a respite centre two days per week to support Betty to cope with her caring role. The day centre staff have observed Betty being rough with Godfrey and so raised a safeguarding concern with Adult Social Care – but looking into Betty and Godrey’s file, it becomes apparent that Godfrey has been abusive to Betty in the past.

This case study considers issues around working with older people experiencing domestic abuse, dementia and longstanding abuse, and carers as perpetrators and victims of domestic abuse.

When you have looked at the materials for the case study and considered these topics, you can use the critical reflection tool and the action planning tool to consider your own practice.

Case details

Download the case details as a PDF file (550KB)

Betty and Godfrey have been married for 52 years. Betty is originally from Barbados and Godfrey from St Kitts. They have three children. Marcus and Gloria live in the USA. Angela, who is a carer for her son with complex needs, and her husband live nearby.

Godfrey is living with dementia after a diagnosis 18 months ago. Their GP made a referral for a carer’s assessment for Betty due to her being stressed due to Godfrey’s ‘increasingly unreasonable demands’. As a result Godfrey attends a day care centre two days a week to give Betty some respite. Godfrey is described as ‘a real charmer’ and is popular with the staff and centre members.

The centre staff have noted that there is a ‘volatile’ relationship between Betty and Godfrey. Incidents include Betty trying to drag Godfrey out of the car to get him into the centre and Betty talking sharply to Godfrey because he was refusing to leave the centre when she came to pick him up. The staff find Betty trying at times. She gives them very specific instructions about how to provide support to Godfrey, for example what he can and can’t eat. They have found Godfrey likes food that Betty says he doesn’t like.

Recently staff assisting Godfrey found that he had bruising on both of his upper arms. A nurse who was visiting said they could be from being grabbed. Godfrey said that it was true, Betty had grabbed him when they were having a row, but that it was nothing to worry about ‘just the ups and downs of married life’. The nurse told Godfrey about safeguarding and he said he didn’t want a referral made.

When the nurse discussed this with the centre manager they decided that as Godfrey might not have had the capacity to make the decision about going ahead with a safeguarding referral because of his dementia, and because he might be at risk of harm before his next day at the centre, they would make a safeguarding referral.

Notes on Godfreys and Betty’s social care files refer to the police having attended the household twice in the last 8 months after calls from Betty during the late evening in which she said Godfrey was out of control and hurting her.

How would you make safe enquiry with each of Godfrey and Betty?

Who will meet with each of them?

How will you contact them to arrange the meeting?

In this section are two downloadable PDFs – one is a partly completed assessment form related to this case study, and another is an example of what a completed form could look like.

Suggested exercise

Download the partly completed assessment as a PDF file (503KB)

Download the completed assessment as a PDF file (502KB)

Use the partly completed assessment form:

• What actions would you discuss with Betty to ensure her immediate and longer term safety?
• What precautions would you need to take to avoid putting her at higher risk of harm?
• What is your analysis of the situation? Is coercive control occurring? What is the evidence of this?
• What is your conclusion?

Download the blank DASH_RIC as a Word .doc file (226KB)

The purpose of the DASH risk checklist is to give a consistent and simple tool for practitioners who work with adult victims of domestic abuse in order to help them identify those who are at high risk of harm and whose cases should be referred to a MARAC meeting in order to manage their risk. If you are concerned about risk to a child or children, Safe Lives recommend that you should make a referral to ensure that a full assessment of their safety and welfare is made.

There are two downloads on this page.

One shows a blank DASH risk checklist, with quick start guidance from Safe Lives. The key point is to remember that your professional judgement is key in making a decision about risk; a tool can help, but the score it comes out with is not definitive.

This is especially relevant when working with people with care and support needs, for whom some of the questions may not be relevant.

Download the case study DASH-RIC as a PDF file (206KB)

The other shows an example of a completed DASH relating to this case study, for you to critique and appraise.

Suggested exercise:

• Read the case details and full assessment document for this case study.
• Using the information contained, fill out a blank DASH risk assessment tool.
• Discuss how you found it; did you have all the required information? Would you be able to get all the required information in practice? Would you make a referral to MARAC?

This section picks out three main topics from the case study featured. For Betty and Godfrey’s case study, the topics include:

Working with older people experiencing domestic abuse/lifelong coercive control

Dementia and longstanding domestic abuse, the role of the marac.

A selection of references, tools and further reading for each topic is below.

‘A  review of the impact of domestic abuse for older women  in Health and Social Care in the Community in 2011 highlighted that the issue is significant but that health and social care professionals fail to recognise domestic abuse between older couples.’

This is referred to in an article by Natalie Valios, 26 March 2015, in Community Care which summarises the outcome of the serious case review into the death of Mary Russell. The article offers key pointers for social workers and provides useful links: http://www.communitycare.co.uk/2015/03/26/domestic-abuse-doesnt-stop-at-60/

McGarry et al’s (2011) review of the literature investigating older women’s experience of domestic abuse points to the longer term effect of physical abuse, the psychological impact at the time and cumulatively in later life, and emotional issues which many felt unable to disclose to others – a significant barrier to reporting in older age being that women ‘had kept their experiences ‘hidden’ from family friends and neighbours’ for many years.

The voices of older women survivors – in the accounts of sixteen women, aged 63-79, who had experienced domestic abuse – are highlighted in McGarry and Simpson, (2011).

McGarry et al (2011) also detail some information on the lack of research on the experiences of older women from ethnic minorities, concluding that ‘taken as a whole, the voices of older women from ethnic minorities remain unheard and this clearly represents an additional deficit in knowledge and understanding.’ (2011:11) Social workers working with Betty will need to consider possible limitations of their knowledge base and be proactive in this respect.

Case study 1 Ayesha focuses on intersectionality and building cultural capability .

Advice for health and social care professionals – for example those working in care homes who may be particularly well placed to support older people to begin to talk about domestic abuse and coercive control in their intimate relationships – is available here:

Live Fear Free: Supporting a client who is experiencing domestic abuse or sexual violence.

‘Safe Lives’ offer a range of useful information on working with older people experiencing domestic abuse: http://www.safelives.org.uk/node/861

There is a surprisingly limited amount of research on this topic although findings from Dr Lucy Knight and Professor Marianne Hester’s research highlights that the onset of dementia in the situations studied led to an escalation in the severity of the domestic abuse: http://www.rcpsych.ac.uk/pdf/Knight%20Lucy.pdf

Other papers look at issues related to but not quite focused on the experience of domestic abuse for people with dementia, for example ‘elder abuse’. The lack of separation of domestic abuse and coercive control from ‘elder abuse’ in the literature to date makes it difficult to draw conclusions about domestic abuse and older people.

Blog post: Perpetrators with dementia

Case study example from Solace Women’s Aid: Older domestic violence victims feel helpless in the face of long-term abuse

Podcast: For their Spotlight series, Safe Lives have developed a number of podcasts which explore issues relating to domestic abuse and people with social care needs. One of these is focused on changing attitudes towards older people and domestic abuse.

Access the podcast recording here : Domestic abuse and older people: Are attitudes changing?

Access the transcript of the podcast here

See also Tool 2, Reflection on attitudes towards older people and domestic abuse.

A useful summary of research findings on MARAC processes has been produced by NIHR School for Social Care Research and Manchester Metropolitan University which recognises that MARAC domestic violence processes and safeguarding processes may need to be followed in parallel. This can be found in Tool 3, below.

‘MARACs are ‘multi-agency risk assessment conferences’ that share information about the top 10% high risk domestic violence cases in order to produce co-ordinated actions to reduce the risk and increase victim safety.’

Rachel Robbins et al’s (2014) paper draws attention to the potential and limits of the Multi-Agency Risk Assessment Conferences (MARACs) in supporting adults with social care needs who also experience domestic violence.

Tool 1 below gives specific guidance on MARAC processes with older people.

Tool 1: Safe Lives guidance for MARACS, hidden victims: older people

Tool 2: reflection on attitudes towards older people and domestic abuse, tool 3: nihr domestic violence, adult social care and marac.

Download the tool as a PDF file (191KB)

Historically, older people (60+) experiencing domestic abuse have formed part of a ‘hidden’ group.

There is a need to focus on their experiences and the barriers they face when being identified as victims (or perpetrators) and also in being provided with safe and appropriate services.

There are various reasons why this is not happening in a consistent way across the UK. Services are typically set up with younger clients in mind, older people are less likely to call 999, and particular cultural or generational attitudes often exist towards marriage and family life. Abuse can often be hidden behind other physical and mental health conditions, and a lack of awareness among some professionals prevents recognition of this underlying cause.

There has been an expectation that the introduction of the Care Act 2014 would improve the identification, reporting and response to older victims of domestic abuse, and significant work in Wales and in some areas of England has begun to raise awareness around the specific needs of older victims and perpetrators. Maracs must ensure that wider safeguarding concerns are addressed; this is especially pertinent in older people's cases where there may be an increased chance that the perpetrator and/or victim will require support relating to physical or mental health needs.

This tool outlines:

• What is different about older victims’ experiences of domestic abuse?
• What should happen before MARAC?
• Who are the right people to be at the table?
• What research to do before the meeting (e.g. impact of abuse on the victim, and their views and wishes)
• What representatives from different agencies should offer
• What effective action planning during MARAC looks like
• Tips for professionals working outside the MARAC

Download the tool as a PDF file (534KB)

For this exercise, first of all read the podcast transcript or listen to the podcast

Spotlight Episode 3: Domestic abuse and older people: are attitudes changing? (Safe Lives, 2016)

The podcast features a discussion between Jane, an IDVA (Independent Domestic Violence Advocate) based in a hospital and Mel, who is Adult Social Care’s representative on a local MARAC.

The tool highlights sections of the podcasts as a reference to start off discussion and debate about practice in your areas.

It includes reflective questions on issues including:

• Challenges to practice in this area
• Use of Domestic Violence Protection Orders (DVPOs)
• Identifying coercive control
• The line between concerned or stressed carer, and perpetrator of domestic abuse
• Barriers to older people accessing support
• The use of MARAC

Download the tool as a PDF file (160KB)

This tool summarises a study which was interested in identifying and assessing the effectiveness of social care’s contribution to the development of MARACs and the protection of adults facing domestic abuse, using the city of Manchester as a case study site.

The researchers attended MARACs, interviewed members of MARAC partner agencies and adult social care workers, undertook focus groups with survivors of domestic violence, and focus groups with specialist domestic abuse practitioners.

The 4-page summary outlines:

• Key points from the research
• Findings: service user perspectives
• Findings: agency perspectives
• Interviews with adult social care

Questions for reflection on reading the report are outlined below.

• What is the threshold for MARAC in your area?
• How would you use your professional judgement to make a case for an older person who might not meet the threshold for MARAC, but is at high risk, to be included in MARAC?
• Can you see any tensions between using a Making Safeguarding Personal approach, and MARAC?
• How can these tensions be overcome?

There is also comprehensive reference to MARAC procedures in the LGA & ADASS guide to support practitioners and managers which is available here:

Adult safeguarding and domestic abuse: a guide to support practitioners and managers (LGA and ADASS, 2015)

(see also Case study 3 John Topic – Complex caring relationships )

Further reading:

Knight L and Hester M (2014) Domestic abuse and dementia: what are the characteristic features and patterns of longstanding domestic abuse following the onset of dementia? Safe Vol 48 (4) pp 10-14.

McGarry J, Simpson C and Hinchliff-Smith K (2011) The impact of domestic violence on older women: a review of the literature. Health and Social Care in the Community , 19,1, 3-14 Available here: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2524.2010.00964.x/full

McGarry J. & Simpson C (2011) Domestic abuse and older women: exploring the opportunities for service development and care delivery. The Journal of Adult Protection , 13, 6, 294-301. Available here: http://www.reducingtherisk.org.uk/cms/sites/reducingtherisk/files/folders/resources/victims/Domestic_abuse_and_older_women_McGarry_and_Simpson.pdf

Robbins R, McLaughlin H,  Banks C,  Bellamy C,  Thackray  D (2014) ‘Domestic violence and multi-agency risk assessment conferences (MARACs): a scoping review’,  The Journal of Adult Protection , Vol. 16 (6), pp.389 – 398

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What are the 6Cs in Care?

Last updated on 20th December 2023

In this article

The 6Cs – care, compassion, courage, communication, commitment and competence – are the central set of values of the Compassion in Practice strategy, which was drawn up by NHS England Chief Nursing Officer Jane Cummings and launched in December 2012. These values and their associated behaviours underpin the high-quality care delivered by nurses, midwives and care staff.

The Department of Health launched this strategy declaring that “The values and behaviours covered by the 6Cs are not, in themselves, a new concept.”

However, putting them together in this way to define a vision is an opportunity to reinforce the enduring values and beliefs that underpin care wherever it takes place.

It gives us an easily understood and consistent way to explain our values as professionals and care staff and to hold ourselves to account for the care and services that we provide.”

The purpose of the 6Cs is to ensure people are looked after with care and compassion, by professionals who are competent, communicate well, have the courage to make changes that improve care and can deliver the best, and commit to delivering this all day, every day (NHS 6Cs England, 2012).

The 6Cs are all equally important and are essential to providing high-quality, compassionate care.

There are currently approximately 5.8 million people working in the Care sector . The Compassion in Practice strategy and the 6Cs apply to every care and support setting including:

• Care homes.
• Community services.
• Dental surgeries.
• Doctors/GPs surgeries.
• Mental health services.
• Services in the home.
• Ambulances.
• Homecare agencies.
• Phone/online advice.
• Prison healthcare.

And to all workers and volunteers within these care and support settings, for example:

• Disability support workers.
• Home care workers.
• Attendant care workers.
• Personal care workers/assistants.
• Volunteer carers.
• Occupational therapists.
• Community support and outreach workers.
• Doctors, GPs.
• Hygienists.
• Paramedics.

But what are the 6Cs and what do they mean in practice? Compassion in Practice defined the 6Cs as:

“Care is our core business and that of our organisations and the care we deliver helps the individual person and improves the health of the whole community. Caring defines us and our work. People receiving care expect it to be right for them, consistently, throughout every stage of their life.”

This means that the prevention, early intervention and health promotion are as important as the treatment of ill health. It entails ensuring that people get both a positive experience and the best possible outcomes from care.

To make this happen has involved working across health and care boundaries to provide support and services which enable people to remain active, connected and independent in their own homes, or another place of their choice, for as long as they are able, and it means joining up health and care services to provide the integrated care that people want.

Care staff in the care sector have been central to achieving high-quality care for some of the most vulnerable people. People’s need for care and support is changing – and the provision of care is changing too. Demand for services for long-term care and support into very old age will grow and there is clear need to support people to stay as well as possible for as many of those years as possible. The 6Cs has caused care providers to think about health and care in new ways and deliver integrated services to people, families and communities. What people who use services want is a seamless high-quality service where people on the ground work well together in spite of different structures and systems.

“Compassion is how care is given through relationships based on empathy, respect and dignity – it can also be described as intelligent kindness, and is central to how people perceive their care.”

The quality of care given is as important as the quality of the treatment. People receiving care want to be treated kindly, with respect and dignity . The don’t want to have to keep repeating their story and their details to every caregiver they meet with; they want to be listened to and to be heard. This means understanding individual needs, showing empathy and sensitivity and providing care that respects people’s diversity, dignity and individuality.

Demonstrating compassion also involves ensuring people are partners in their own care, and are at the heart of the decision-making process. People want their feedback and views to be listened to and acted upon, they want services to be designed to enable them to be involved in their care.

Some practical actions that those involved in providing care can take to ensure they are creating a compassionate environment include:

• Actively listening to recipients of care, their families and others involved in their care.
• Giving, inviting, affirming and learning from feedback.
• Collaborating across professional boundaries to ensure people receive quality care.
• Inter-professional/organisational working.
• Being mindful of behaviours that get in the way of human-to-human connection.
• Celebrating and sharing information, data, what works well, best practice.

“Competence means all those in caring roles must have the ability to understand an individual’s health and social needs and the expertise, clinical and technical knowledge to deliver effective care and treatments based on research and evidence.”

This begins with recruitment. The description of the 6Cs is a useful tool for recruiting into roles at all levels within the care sector – from senior management to frontline workers. They can be used to assess the values people are bringing to the role and are being included in person specifications and competency-based interview questions.

The 6Cs are also mapped across many care qualifications and leadership frameworks with the aim of empowering staff at all levels to work to improve the experience and outcomes of the people using their services. The 6Cs are being used as key competencies in performance management ensuring good practice is recognised and areas for development identified and supported.

Everyone in the care sector has a responsibility to reflect on their competence and practice and to maintain their CPD to ensure they are at the top of their game providing high-quality care.

Communication

“Communication is central to successful caring relationships and to effective team working. Listening is as important as what we say and do and essential for ‘no decision about me without me’. Communication is the key to a good workplace with benefits for those in our care and staff alike.”

Frontline care staff are at the heart of the communication process as they assess, report and record the care and treatment of those in their care. They need to ensure that they are handling information sensitively and confidentially, actively listening to what they are being told by those they are caring for, co-workers, managers and other agencies and accurately passing on information where and when required. Detailed record-keeping is also crucial to ensure that care and treatment is co-ordinated and that others are made aware of any necessary information they need.

Communication involves a number of other skills that caregivers will need to use in providing high-quality care such as the skills involved in, for example, customer care, establishing needs or dealing effectively with complaints, and team working, working effectively with both internal co-workers and external agencies.

“Courage enables us to do the right thing for the people we care for, to speak up when we have concerns and to have the personal strength and vision to innovate and to embrace new ways of working.”

Working in the care sector is such a responsible occupation; care workers take responsibility for the care that they provide, for the safety of those in their care and for making judgement calls that affect others.

Amongst those judgement calls is having the courage to speak up when you notice that something could be done in a more effective way to improve the care you provide.

The 6Cs were designed to empower all staff to contribute to improvements in care and that includes “whistleblowing” when something is wrong, crucially if you have concerns over ill-treatment, abuse or bad practice. Care workers may find this uncomfortable, however, they need to move past this, to be honest and brave in order for change to happen.

“A commitment to our patients and populations is a cornerstone of what we do. We need to build on our commitment to improve the care and experience of our patients, to take action to make this vision and strategy a reality for all and meet the health, care and support challenges ahead.”

The commitment element of the 6Cs is not only the dedication to the role continually demonstrated by carers, but also a commitment to developing their own skills and knowledge, to sharing knowledge, to working effectively across all sector boundaries, to challenge malpractice or negative and discriminatory behaviours in order to continually improve the quality of care provided. It is also a commitment to embracing the 6Cs and embedding them into their everyday practice.

Case studies of the 6Cs in action

An elderly patient at Wrightington Hospital told the Quality and Safety Matron that her care was excellent, but also felt confident enough to say when it wasn’t. Whilst the patient felt her care was excellent, she confided that she missed home and family.

A nurse who was caring for her decided to pin a collection of photos to the wall. This simple act of compassion helped to boost the patient’s mood whenever she was feeling down. A good patient experience leads to a better recovery and in this case meant getting the patient home to her loving husband and family as soon as possible.

Croydon Health Services have done lots of things to improve the patient experience, including running a new weekly series in the internal e-newsletter for staff called: “What have you done today to improve care and patient experience?”

It’s just one way of improving staff engagement to create a culture of shared learning and good news stories. One nurse helped an anxious patient prepare for a colonoscopy by helping with her feelings of vulnerability about the gown and underwear she was given.

By talking to her at eye level, introducing herself and then helping the patient feel securely covered up, she helped the patient feel prepared. Maintaining a patient’s dignity is such a simple thing to do, and can change a patient’s experience in an instant.

By sharing examples of good news stories like this with the whole staff, the team can prove that they are listening to patients and demonstrating the 6Cs in their day-to-day tasks.

The 6Cs are for everyone – they apply at every point in the chain of delivering health and care services to continually improve high-quality care provision.

Sussex Partnership Foundation Trust is working with the Against Violence and Abuse Stella Project (a leading UK agency addressing the overlapping issues of substance use, poor mental health and domestic and sexual violence.) to help all staff ‘be aware of and respond to domestic and sexual abuse’.

The Stella Project spends two days a week with the Trust sharing expertise, which is then shared across the Trust through education and training. This helps to increase compassion and competence in all staff by ensuring practice is evidence based.

Up to 15 days training is provided to frontline services, to work with both survivors and perpetrators of domestic and sexual violence, as well as train-the-trainer training and development of a domestic and sexual violence competency framework to inform long-term workforce development.

There are also plans for mentor team managers and senior practitioners to become domestic and sexual violence champions. The project aims to achieve whole organisational change which makes sure staff feel confident, competent and knowledgeable enough to ask about domestic and sexual violence, and to make appropriate responses and referrals.

North Derbyshire Clinical Commissioning Group (NDCCG) is working with patients, acute and community providers, primary care, social care and the voluntary sector to make sure people are only admitted to hospital if it is absolutely necessary.

This includes a redesign of the urgent care pathway, an integrated model of care, and a greater focus on patient-centred care within commissioning. An acute reablement unit was created to make sure people are only admitted to an acute medical ward when absolutely necessary and when it’s in their best interests, with the most important place being home.

The changes to the care pathway, the commitment of the staff and the support of commissioners has enabled boundaries to be broken down, making sure that the right care is delivered in the right place at the right time.

Patients report how they have been supported to meet their personal goals and how staff, in demonstrating 6Cs values, are improving patients’ experience of care. This has included simple things which matter to patients – for example seeing a friendly face they know and trust, who has managed their care in both the acute and community environment, enabling a safe discharge back home.

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About the author

Megan Huziej

Megan has worked with CPD Online College since August 2020, she is in charge of content production, as well as planning, managing and delegating tasks. Megan works closely with our writers, voice artists, companies and individuals to create the most appropriate and relevant content as well as also using and managing SEO. She gained her Business Administration Level 3 qualification over the duration of being at CPD Online College as well. Outside of work Megan loves to venture to different places and eateries as well as spending quality time with friends and family.

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Case studies

Improving personal health and wellbeing.

• Helping our people manage stress and anxiety – West Midlands Ambulance Service
• How to establish a model of psychological support for employees during COVID-19 and beyond – Wrightington, Wigan and Leigh NHS Foundation Trust
• The impact of listening – University Hospitals of North Midlands NHS Trust

Relationships

• Conversation workbook – Lancashire and South Cumbria NHS Foundation Trust
• Wellbeing conversation and compassionate toolkit – Northern Care Alliance NHS Group

Fulfilment at work

• Working from home – Pennine Care NHS Foundation Trust
• Employee engagement – Birmingham Women’s and Children’s NHS Foundation Trust

Managers and leaders

• Leading by example – Birmingham Women’s and Children’s NHS Foundation Trust
• Building the skills of line managers – University Hospital Southampton NHS Foundation Trust

Environment

• Health needs assessment – Northumbria Healthcare NHS Foundation Trust
• Improving physical infrastructure – Lancashire Teaching Hospitals NHS Foundation Trust

Data insights

• Measurement and return on investment capture – Imperial College Healthcare NHS Trust
• Sickness and absence reporting – Norfolk Community Health and Care NHS Trust

Professional wellbeing support

• Multi-disciplinary case management – Northumbria Healthcare NHS Foundation Trust

Download a PDF of the above NHS health and wellbeing model (2021): creating a health and wellbeing culture infographic

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An Exploratory Multi-Case Study of the Health and Wellbeing Needs, Relationships and Experiences of Health and Social Care Service Users and the People who Support them at Home

Dr louise henderson.

1 Bon Accord Care, Inspire Building, Beach Boulevard, Aberdeen, AB24 5HP, GB

2 Robert Gordon University, School of Nursing & Midwifery, Garthdee Road, Aberdeen, United Kingdom, AB10 7QE, GB

Dr Heather Bain

3 University of Highlands and Islands, Institute of Health Research and Innovation, Centre for Health Science, Old Perth Road, Inverness, United Kingdom, IV2 3JH, GB

Dr Elaine Allan

Catriona kennedy.

4 The Queens Nursing Institute Scotland, 31 Castle Terrance, Edinburgh, Scotland, United Kingdom, AH1 2EL, GB

5 The University of Limerick, Department of Nursing and Midwifery, Limerick, Ireland, V94 T9PX, GB

Introduction:

International policies and legislation set a precedence of person-centred sustainable integrated Health and Social Care (HSC) that meets the health and wellbeing needs of service users through improved experiences. However, current research focuses on service models, with fewer studies investigating experiences and needs.

This qualitative multi-case [n = 7] study was co-designed with key stakeholders and aimed to explore experiences and needs of people who access and provide HSC at home. Data were collected in a regional area of Scotland (UK) via single [n = 10] or dyad [n = 4] semi-structured interviews with service users [n = 6], informal carers [n = 5] and HSC staff [n = 7] and synthesised using Interpretive Thematic Analysis.

Interpersonal connections and supportive relationships were instrumental in helping all participant groups feel able to cope with their changing HSC needs and roles. They promoted reassurance, information sharing and reduced anxiety; when they were lacking, it negatively impacted upon experiences of HSC.

Discussion:

Promoting inter-personal connections that encourage supportive relationships between people who access and provide HSC and their communities, could promote person-centred Relationship-based care and improve HSC experiences.

Conclusions:

This study identifies indicators for improved HSC, advocating co-produced community-driven services to meet the self-defined needs of those who access and provide care.

Introduction

Many populations across the globe are ageing, with growing numbers of people living with multiple long-term conditions, leading to increased complexity of care provision and rising demand for services [ 1 ]. Integrated Health and Social Care (IHSC) services offer a potential solution to support individual citizens across these populations [ 2 ]. Defining integration can be challenging, it can be seen as a design feature of service provision, organisational structures, or as a medium for delivering person-centred care (PCC) in an efficient way [ 3 ]. To add clarity to its context in this paper, IHSC is considered to be care that is delivered jointly between service users (people who use health and/or social care services), informal carers (people who offer non-contractual support to a service user), and health care and social care (HSC) organisations (including third sector and community initiative groups). Integration aims to promote greater simplicity in public services and facilitate timely, stream-lined access to appropriate HSC [ 4 ]. The actuality for some people who access HSC reflects services that do not always work together to provide care in an integrated way [ 5 , 6 , 7 ]. Moreover, despite widespread acknowledgement in the literature that people who use HSC should be involved in making decisions about their own care, they do not always feel as though they are [ 5 ]. Regional and local access to HSC can be variable, unequal and ill-suited to their needs, being disproportionate to the need and demand for services and reducing access to support [ 8 , 9 ]. There is a plethora of literature containing evidence-based accounts of assessing need, planning, implementing and evaluating IHSC models of care. Whilst these can guide HSC services and sectors in providing care, the experiences of service users can help to decipher health and wellbeing outcomes that are important to them [ 10 , 11 ]. However, there appears to be a paucity of evidence on the experiences of those who access and provide such services.

Research design

Involving stakeholders in this study.

An integrative literature review was conducted as part of the lead authors PhD study. This review identified gaps in current knowledge about the experiences of people who accessed HSC. Findings were discussed with key stakeholders, including people who accessed and provided HSC services and members of the public. Those who accessed and provided HSC offered their verbal and written feedback in a series of three face-to-face roadshow events (April 2018 – Oct. 2019; attendance circa 80 people per event). Members of the public, who had expressed an interest in receiving information about research activity in their local area, also offered their verbal and written feedback in a community network group meeting (Dec. 2019; attendance circa 50 people). Their feedback and findings of the literature review informed the development of a short series of research questions ( Table 1 ), aim and objectives ( Table 2 ) for this PhD study. Their valued engagement, through early fieldwork and wider formal and informal engagement events, continued iteratively throughout this study, later converting to online engagement events under Covid-19 pandemic restrictions.

Research questions.

Key objectives.

Study design and methods

Relationships between stakeholders in HSC, were explored using Yin’s [ 12 ] embedded model of multi-case study design and qualitative methods ( Tables 1 , ​ ,2). 2 ). This design embraced each participant’s unique perspective whilst recognising a need for them to be ‘bound’ to others with whom they had a caregiver-receiver relationship.

Recruitment of contextual study sample

Scotland has an estimated population of 5,479,900, with 32 regional areas that have populations ranging from 626,410 to 22,190 [ 13 ]. Each regional area has one or more Health and Social Care Partnership (HSCP) areas within their geographical boundaries. These HSCPs facilitate operational delivery of an integration strategic plan to meet population health and wellbeing needs in their area [ 14 ].

An invitation to take part was distributed to potential participants in one regional area of Scotland with three HSCP areas, via professional social media accounts and a cascade email to HSCP staff. Service users [n = 6], informal carers [n = 5] and HSC staff members [n = 7] were recruited between September 2019 – February 2020. Participants [n = 18] were grouped in cases [n = 7]. A case was formed when a service user identified one or two people who supported them at home to take part with them.

Five cases had a service user, informal carer and staff member participant. One case contained one staff member participant, after the service user and informal carer withdrew from the study. One further case contained a staff member and a service user, when the informal carer participant withdrew. Cases were labelled A-F and participants were given pseudonyms to protect their identity ( Figure 1 ).

Contextual sample and cases.

Data collection

Data were collected via semi-structured interviews [n = 14] between Dec 2019 – March 2020. Service users chose an individual interview [n = 2] or a dyad interview [n = 4] with their informal carer. All Staff members [n = 7] and an informal carer [n = 1] were also interviewed individually. All interviews were conducted face-to-face, except for two individual telephone interviews [informal carer Esther; staff member Esme].

Data analysis

Simultaneous inter-case and cross-case analysis was conducted to explore the diversity of experiences and HSC needs across cases in the region [ 12 , 15 ]. Interpretive Thematic Analysis facilitated the development of a framework for developing insights, concepts and patterns of meaning across cases [ 12 , 15 , 16 ]. Researcher reflexive field notes, journaling, and ongoing review of the emerging findings promoted transparency and thick-description of methods, analysis and subsequent findings [ 15 , 17 , 18 ]. Analyses were reviewed by supervisors [n = 3] within the research team, and subject to ongoing external review via multiple research forums across both academic and HSC practice. Furthermore, members of the public in a community network group were invited to explore preliminary thematic findings during analysis, to iteratively develop interpretation of the data and subsequent findings [n = 12] (July 2021).

Promoting trustworthiness

Credibility, transferability, dependability and confirmability were promoted by incorporating multiple participant perspectives, pattern matching techniques, ongoing scientific review and involving stakeholders during data analysis, construction of themes and write-up [ 15 , 17 , 18 ]. Ethical approvals were gained in June 2019 at the hosting academic institution (SERP Reference Number: 19-12). Ethical approvals were granted in October 2019 by the UK-wide Integrated Research Application System (IRAS) (IRAS Project ID: 247771; REC reference: 19/NS/0148). They were granted with the IRAS Research Ethics Committee’s recommendation that people with learning disabilities and those with profound mental health issues were excluded (discussed further in the strengths and limitations section below).

Key findings

Context and overview of findings.

To offer context to the experiences participants shared within their case, relevant background information has been included in Table 3 .

Relevant background information for participants and their cases.

Following analysis, making interpersonal connections was identified as an overarching theme central to helping participants meet their health and wellbeing needs and/or those of others. Figure 2 presents five main themes representing the different contexts in which these connections were made, from understanding self, to linking with individuals, communities, services or wider systems. A summary of key factors that enhanced and hindered participants’ connections and experiences of HSC across these contexts is included in Figure 3 .

Overview of themes.

Factors that enhanced and hindered connections and experiences of HSC.

Understanding and coping with changing health and wellbeing needs

Participants across all groups discussed their experiences of understanding and coping with changing health and wellbeing needs or supporting others to do so.

Understanding changing health and wellbeing needs

Service user [n = 6] and informal carer [n = 7] participants’ understanding of their changing health and wellbeing needs, were shaped by their connections with others. They felt their experiences of accessing HSC could be challenging. Some HSC staff had focussed on service users’ medical conditions that were sometimes unrelated to their presenting complaint, suggesting some staff may not be adopting a person-centred approach to care:

[Caitlin, quoting her Gastric Surgeon’s referral letter, gestures air-quotes] ‘Met with Caitlin, slim lady with Multiple Sclerosis, and I recommend that you give her a stoma’ [Catlin pauses, furrows brow and rolls eyes] …that’s when I was an [gestures air-quotes again] ‘MS person’ and nothing else.” Caitlin, service user, HSCP 1 .

All informal carer participants [n = 5] highlighted the impact their caring role had on their health and wellbeing, and their own need for person-centred support in their caring role. However, informal carer Anisha described an encounter with a Social Worker who exhibited a judgemental attitude, questioning her commitment as a wife and her role as an informal carer, when she raised the prospect of becoming unwell herself and the potential that she might not be able to care for Arthur:

“The quote I got thrown back at me was, ‘a good wife would do that for her husband’, and I thought, yeah, if a good wife’s here type of thing but, I didn’t say it, I should’ve said it really or, maybe I should’ve just turned round and said, ‘well, I’m nae a good wife then!’, you know [crosses arms, frowns].” Anisha, informal carer, HSCP 1 .

Informal carers [n = 5] also highlighted the negative impact that increased stress, as a result of their caring responsibilities, had upon their wellbeing. They reported low mood, depression, emotional strain and physical exhaustion. Staff member participants [n = 7] acknowledged their role in supporting service users and informal carers whilst their health and wellbeing needs were changing.

Feeling able to cope with changing health and wellbeing needs

Service user and informal carer participants emphasised a need for support from HSC staff with their changing health and wellbeing needs. They wanted reassurance and support from staff to feel empowered to make decisions about their care, and to access information to help them cope:

“We get an appointment with them, just to go through things… they [HSC staff] don’t make up your mind for you but, they give the necessary information to allow you to come to a sensible decision… you canna make a decision on anything, if you don’t have the facts, you know.” Arthur, service user, HSCP 1 .

For service users and informal carers, coping with changing health and wellbeing needs was also linked to being able to attend to practical tasks, such as managing finances, personal care, eating and drinking, managing continence, housework and shopping tasks. For some, getting ‘out and about’ to meet others [n = 3 informal carers] and contact with HSC staff [n = 4 service users], promoted engagement with communities and social contacts. However, all service user participants [n = 6] reported feeling lonely and isolated, and this was a source of concern for their informal carers [n = 3] and staff members [n = 2].

Fostering connections and supportive relationships with others for health and wellbeing

Participants’ shared their experiences of fostering connections to build supportive relationships, which enhanced their health and wellbeing.

Building supportive relationships between service users, informal carers and HSC Staff

For all participant groups, connecting with others across HSC services, organisations and sectors to build a supportive relationship was facilitated through face-to-face interactions. Staff member [n = 4] and service user [n = 2] participants highlighted co-location of services as a means of promoting this. An interpersonal or ‘friendly’ connection was perceived by all participant groups as a necessary foundation for building supportive relationships. Commonalities between individuals was a key quality of these connections. Service user Donna, who had carers supporting her for a number of years, offers an example of this when she described her experiences of her need to connect with her HSC carer:

“She’s [Donna’s Carer] chatting to me when I’m showering and I, I find out about her family and things, chat about her family and, you know, that sort of thing… … I considered them as friends [her carers] and, I mean, I have a carer now, who’s been coming for over four years, in this company, and, I mean, she’s really efficient and, you know, I’m made to feel really comfortable and all that but, I mean, I said to her one day, do you think of me as a friend, or just another client [hesitates, looks down]… she [the carer] said, ‘well, just another client ’. Donna, service user, HSCP 2 .

During the interview, Donna’s non-verbal body language suggested she was disappointed with the disparity between the meaning her HSC carer had placed on the relationship and her own perceptions of it. For all participant groups, supportive relationships were fostered over a period of time, from a place of trust between two individuals, services or sectors. The opportunity to build up a trusting bond was afforded through continuity of contact between these groups, leading to a perception of more collaborative supportive relationships and HSC practices.

Key characteristics of supportive relationships

Key characteristics required for fostering a supportive relationship, as perceived by all participant groups, included personal attributes of empathy, trust, discernment and reliability:

“I think Beverley works well because I can, I can count on her… I know that she’ll be there and that, that she won’t, you know, she won’t turn up sometimes and not others, that’s really quite important to me.”   Barney, service user, HSCP 1 .

Furthermore, when service user and informal carer participants were looking to foster a supportive relationship with HSC staff, they also wanted those staff to be knowledgeable about their condition and circumstances. All participant groups looked to share information, offer support and reassurance when communicating within supportive relationships. However, communication was perceived as challenging across HSC organisations and sectors. All participants [n = 14] attributed this to inefficient methods of communicating across organisational boundaries, with some staff members [n = 5] reporting system-wide data protection issues when trying to share information about those whom they were supporting.

Connecting with communities for health and social wellbeing

Service user and informal carer participants’ experiences of connecting with communities helped them with practical tasks and to maintain social contacts, which were perceived to improve their health and wellbeing. Communities were defined by service user and informal carer participants as local geographical areas, meaning people who lived nearby. They also described communities, where people had a common interest or role such as a religious church group or a group of informal carers.

Maintaining and promoting practical tasks with support from the local community

Service users and informal carers reported that members of their communities provided valued reassurance and support. Some informal carers [n = 2] asked members of their communities to ‘check-in’ with their service user, and service users asked them to help with local grocery shopping and putting their rubbish bins out for collection [n = 2]. Connections that service users and informal carers had with people in their communities were often perceived as more cohesive than those they had with people from statutory HSC services. They attributed this to community members’ in-depth knowledge and understanding of their needs:

“People that support me, are often people who are integrated into the local community so, people know them, erm, and they kind of know me so, that’s quite important to me, like… they know what I need and they, they know that I can’t walk too far so if, for example… I’d went and got some very heavy shopping; they would pick it up and put it in the car for me.” Barney, service user, HSCP 1 .

However, for service user Grant, connecting with people in his community had become more challenging as local populations increased and neighbourly knowledge diluted:

“The village is expanded so much, everybody before knew who I was and knew who the kids were but, no… you don’t know all the people now, you see, and there isn’t that contact, village contact, if you like… I don’t think it’s that open, er, neighbourly kind of care that used to be. The people probably are more dependent on, er, trained professional people.” Grant, service user, HSCP 1.

People in his community no longer had knowledge of his circumstances, leading to reduced informal support and to Grant feeling disconnected from his community.

Improved health and wellbeing through social contact with people in the local community

Social contact with others had a positive influence on mental health and wellbeing. Previous knowledge of a service users’ circumstances helped community members to connect with them socially. All informal carers [n = 5] felt their service users’ social contact with others should be encouraged to promote mental wellbeing. Although service users wanted to maintain and make new social contacts [n = 4], when informal carer Esther encouraged service user Eddie to have social contact with others, he reminded her that he also needed time to himself:

“He’ll [Eddie] sort of remind us, ‘I’m in my 70s! I actually quite like just sitting on my own sometimes and, like just having, having a wee [small] rest and taking it easy’.” Esther, informal carer (talking about her father, service user Eddie), HSCP 2.

This highlighted disparity between the expectations of some informal carers and service users, with relation to service users’ desire and need for social contact with others.

Connecting with other service users and informal carers to feel supported

Communities played a vital role in supporting service users, promoting connections and supportive relationships with people who knew and understood their circumstances. Maintaining and making connections with other service user and informal carers offered an opportunity for participants to share their experiences and access information about their condition or caring role, whilst offering peer support and social contact. However, not all service users and informal carers wanted to connect with communities of people who had similar circumstances or conditions [n = 2]. They reported anxieties around their future, and a risk of mis-matched expectations between treatment and progression of their condition:

“My dad [Eddie] was sort of freshly diagnosed, he was sort of advised [by another person who also had Multiple Sclerosis] not to go along [to the support group], that he might find it a bit upsetting because there would be people there further along in the disease, in wheelchairs and really unwell. So, I think he sort of put off going” . Esther, informal carer, HSCP 2.

Service user participants who did attend these groups [n = 3], felt supported because they were able to exchange accounts of treatment options, discuss symptoms and disease progression, and connect with people who knew and understood their circumstances. However, it also presented challenges in other areas as highlighted through an anecdotal account from staff member Catherine:

“I suppose it’s a great charity that patients, erm, get a lot out of [the support group], I’m sure. Sometimes their [the third sector organisation] opinions can be quite forceful, and we have to look at treatment options from an evidence-based practice [point of view] as opposed to perhaps what’s purported by the – [third sector organisation].” Catherine, staff member, HSCP 1.

Connecting with HSC services for help to maintain and promote health and social wellbeing

Participants’ experiences of connecting with HSC services helped them maintain and promote their health and wellbeing, with availability, access, coordination and utility of HSC relevant to their needs.

Availability of and access to services, at a time when they were needed

Service user [n = 4], informal carer [n = 4] and staff member [n = 6] participants described their experiences of accessing HSC services, reporting fragmentation and reduced availability. It was important to all participants that service users and informal carers had timely access to services, such as physiotherapy and General Practitioners (GP). Service users [n = 6], informal carers [n = 5] and staff members [n = 7] reported reduced access to respite services, a need for greater flexibility in the way services were delivered, and reduced access to HSC services because of perceived obstructive ‘gatekeepers’:

“But there’s a woman in [location] who, you have to convince that you’re in need of the services.” Barney, service user, HSCP 1.

Some service users [n = 3] and informal carers [n = 3] attributed reduced access and availability of services to financial constraints, and inflexible ways of working across HSC systems. Service user Barney perceived HSC as a ‘post-code lottery’, where services were available in some areas but not others and where the nature of individual HSC staff members influenced care. However, when participants could gain access to services at a time when they thought they needed them, they felt supported and that their health and wellbeing needs were being met.

“She [GP] gives us [Barney and his wife] such good support. It seems to me to be a bit of a lottery [access to a supportive GP], it depends very much on the nature of the, of the particular GP.” Barney, service user, HSCP 1.

Coordinating and organising services within an HSC system

All participant groups were looking for further clarity on the way HSC was set up and organised across their services. Service users [n = 4] and informal carers [n = 5] perceived that having a named point-of-contact helped them achieve this:

“Having a Care Manager [as a named point-of-contact] that, you know, coordinated things, that would refer you if you needed physio or OT or anything like that, that worked very well.” Donna, service user, HSCP 2.

However, not all service users had a point-of-contact. For some, this led to a perception of reduced levels of access to care and coordination. Service users and informal carers were not always involved in planning their own care, leading to them feeling disempowered. When they were involved in planning their care, they felt it was more efficient and timelier. They sought the support of HSC staff to plan for the future in order to ensure their changing health and wellbeing needs would be met. However, service user Arthur and his informal carer Anisha felt their Social Worker had demonstrated a short-term view and lack of pre-emptive planning of their care. Anisha explained that this made her feel as though she had fraudulently requested potentially unreasonable support; her non-verbal communication during the interview portrayed a sense of anger and distaste:

[crosses arms, purses lips, raises eyebrows and clicks tongue on the roof of her mouth] “It made me feel, almost fraudulent, as though I was asking for something that I shouldn’t have been asking for at that stage, or at this stage.” Anisha, informal carer, HSCP 1.

Utilising HSC services to meet health and wellbeing needs

Participants’ use of HSC services to meet their health and wellbeing needs were varied. Some service users and informal carers were able to meet their needs through regular contact with a GP, specialist or wheelchair service. For some service users and informal carers, use of HSC was more challenging. They encountered lengthy waiting times and thought their care was not always appropriate, resulting in them using similar private sector services at their own expense.

“The waiting list is 15 weeks [for physiotherapy input], which isn’t handy if you can’t walk down the stairs! I couldn’t get away from it being sore… I think 15 weeks of that I would just be round the bend.” Caitlin, service user, HSCP 1 .

In addition, time constraints of support visits exerted negative pressure on service users and staff members relationships. For some staff members [n = 3], the relationships they formed with more experienced colleagues were instrumental in helping them to feel supported and boosting their confidence in their role.

Working together across HSC services to promote health and wellbeing

Participants’ experiences of working together across HSC services and systems to promote and maintain health and wellbeing needs highlighted their understanding of ‘integration’. They acknowledged the positive effect that integration could have on HSC services, with pooled information and resources to promote better outcomes for service users and informal carers. However, ‘integration’ appeared to be an abstract concept to many participants (across all groups). Abigail reported a lack of clarity about structural changes, and a lack of communication and preparation for progressing them:

“Integrated HSC started up here maybe a couple of years ago, we were never really given a lot of information about it, naebody [nobody] ever came to speak to us about it and, to be quite honest, we’re nae [not] really sure how it’s supposed to work ‘cause naebody’s ever discussed it with us… I think a lot of our Locality Managers now are HSCP, as opposed to being health board.” Abigail, staff member, HSCP 1.

Services were reported as disjointed, adopting unsafe communication and information sharing practices when bureaucratic processes did not meet the needs of HSC staff, the services or their HSC system. Some staff member participants [n = 6] suggested they needed further information about other HSC services working with people they were supporting. For staff member Debra, personal safety was compromised. She felt she had been placed at risk because of a communication breakdown that left her feeling vulnerable and uncomfortable:

“I had a patient who was very sexually inappropriate towards me, erm, I was just on my own in his house, so I called the Community Nursing staff to let them know [that the person had been inappropriate] but, they’d known about this for a long time and they had already made him double-visits [where two members of staff attend at the same time]. So, I’d been going in for months without knowing this, that was communication breakdown, it wasn’t nice what happened, and that could’ve been prevented had communication been that little bit better or, had we all been on the same system [electronic information system] and that would’ve flagged up for me. That would’ve saved a lot of uncomfortable feeling for myself [looks towards the floor, laughs uncomfortably, hesitates] … so.” Debra, staff member, HSCP 2.

She felt that, had communication in the HSC system been better (through a joined-up electronic information system) this situation could have been avoided, mitigating risk for staff. Promoting trust between people within HSC systems helped to strengthen their supportive relationships and communication, and collaboration was achieved when people were experienced, knowledgeable and flexible in their approach to working with others.

Discussion and theoretical contributions

Findings of this study support the need for significant investment in facilitating and protecting the allocation of HSC staff time to help them develop supportive relationships with service users, informal carers and other staff across HSC systems. This is based on the understanding those in the relationship maintain contact or interaction over a period of time through continuity [ 19 , 20 , 21 ]. Participants highlighted several key characteristics that they perceived as important in interpersonal connections and supportive relationships, which are represented in a typology below ( Figure 4 ).

Typology of interpersonal connection and supportive relationships in HSC.

In addition to the key characteristics of interpersonal connections and supportive relationships, participants across all groups outlined what they perceived as their health and wellbeing needs ( Table 4 ).

Health and wellbeing needs in HSC.

Findings of this study suggest models of HSC should promote the principles of interpersonal connection outlined above, and encourage supportive relationships between service users, informal carers and HSC staff members as a foundational principle of HSC. The concept of connection, through continuity of contact with someone who offers support, has long been acknowledged in relevant models and frameworks as a fundamental principle of PCC for people who access HSC services. Continuity has been advocated across a variety of contexts for many years, to help reduce admissions to hospital, lower HSC costs, and promote Service User and staff satisfaction [ 22 , 23 ]. Findings of this study support a significant investment in facilitating and protecting the allocation of HSC staff time; it can help them to develop supportive relationships with service users, informal carers and other staff across HSC systems.

Many existing frameworks, theories and concepts identify key principles for integrating, improving and delivering HSC and PCC [ 5 , 24 ]. Some key theories were considered when interpreting participants experiences in this study. It is suggested that the findings outlined add to these. When interpreting participants’ experiences of fostering connections and relationships in a care provider-receiver context, behaviours linked to applications of Bowlby’s Attachment theory across the lifespan, were instrumental [ 25 , 26 , 27 ]. To further acknowledge the influence of connection in an HSC environment, a ‘blended’ theoretical lens was adopted. Caring Theory [ 28 ], Person-centred Care [ 29 ], Relationship-Based Care theories [ 30 ] and evidence informed propositions about experiences of people who access HSC [ 5 ] were combined. Figure 5 , blends these key theoretical constructs and contextual influences that were important to study participants.

Theoretical and contextual influences: People-centred Relationship-based Care.

These theories and propositions intersect as People-centred Relationship-based Care, reflecting the key concepts of ‘integrating HSC’, as identified by the study participants: people, services and systems being ‘connected’ through supportive relationships; encouraging knowledge and understanding between people who access and provide HSC; being involved in making decisions about their own care or role, and working together to meet a shared desire for truly individualised care.

Key learning and application to HSC practice

In an online engagement event, members of the public, HSC service users, and informal carers, offered their insights on how this study’s findings might be applied to HSC practice in their local areas [n = 12] (July 2021). They were clear that they wanted their services to provide streamlined and holistic HSC, regardless of organisational or sectorial boundaries. The concepts of People-centred Relationship-based Care have been framed from the viewpoint of participants and entitled ‘My People-centred Relationship-based Health and Social Care’ (PRHSC) ( Figure 6 ).

My People-centred Relationship-based Health and Social Care (PRHSC).

The PRHSC model and its underpinning theories add an original perspective to key concepts of integrating HSC, as perceived explicitly by the people who are at the very centre of accessing and providing it (service users, informal carers and staff members). Furthermore, it could be argued that it could complement existing models of IHSC, for example, the International Foundation for Integrated Care’s nine key conceptual ‘Pillars of Integrated Care’ [ 31 , 32 ]. The PRHSC model’s underpinning blended theories ( Figure 5 ) align closely with fundamental human rights, contributing to social justice by promoting equality and inclusion [ 33 ]. They highlight key insight into participants’ perceptions of integrated care in HSC practice. The application of the PRHSC model should be tested across different groups of people who access HSC in a variety of settings, to establish reliability and the viability of its use. Further exploration of the potential transferability of findings beyond HSC would be warranted across wider communities. For example, industries or public service sectors where elements of caring are incorporated, such as policing or education. It could be argued that these communities may also benefit from a deeper understanding of interpersonal connections and supportive relationships to inform the caring elements of their work.

Strengths and limitations

The active part that members of the public and key stakeholders played in developing ideas, study design and refining interpretations, is key to the credibility of these findings. A further strength is its multi-case embedded design, which allowed multiple perspectives of participants’ reality to be represented in the data within each case. Reflexivity incorporating reflection, curiosity and consultation with key stakeholders and the research team, underpinned the entire research process thereby increasing the trustworthiness and transferability potential of these findings.

A potential limitation to the transferability of these findings is the contextual nature of HSC with the study population being from two HSCPs in one region in Scotland. In line with the ethics panel recommendations (Section 2.2.4), people who have learning disabilities or profound mental health issues were excluded from this study. This is recognised as a limitation and including these communities could have added depth of understanding and promoted relevance to wider practice areas [ 34 , 35 , 36 ].

The overarching purpose of this study was to explore and better understand the health and wellbeing needs, experiences and relationships of people who accessed HSC and the individuals who supported them at home. Interpersonal connections that developed into supportive relationships were perceived by participants in all groups as instrumental in helping them feel able to cope with their changing HSC needs and roles. Supportive relationships promoted reassurance, information sharing and reduced anxiety; when they were lacking, it negatively impacted upon their experiences of HSC. This study highlights that connections, relationships and cross-sectoral working are important and entirely necessary for integrating HSC services. It is important that policy makers and HSC providers recognise the contribution communities can make to HSC; those communities come in many forms, and one model of integrating HSC does not fit all. No one person or service can provide the whole care-package, and all those who access and provide HSC need to have an equal voice. If the integration of HSC is to be improved, we as a society, must be clear on what is expected of HSC services and systems, and how we prioritise the limited resource across all contexts of HSC to meet health and wellbeing needs.

Prof Anne Hendry, Senior Associate, International Foundation for Integrated Care (IFIC), Director, IFIC Scotland , Honorary Secretary, British Geriatrics Society, Honorary Professor, University of the West of Scotland, UK.

One anonymous reviewer.

Competing Interests

This paper has been produced to summarise and further disseminate findings of the lead authors PhD study; co-authors were part of the supervisory team. The full thesis is available here: https://doi.org/10.48526/rgu-wt-1677988 . PhD studentship was co-funded by Robert Gordon University and NHS Grampian. Funding for the publication of this paper was provided via the same studentship fund.