1. The voice of people who use services

People must come first. Organisations’ structures, governance, strategy, policy and partnerships all matter. But they must only ever be secondary, serving to help a primary aim of understanding people’s aspirations, needs and the support required to live a life.

There is no such thing as a ‘typical’ person who uses health and social care services. Every individual who needs help and support has their own unique set of circumstances, needs and assets. And there are no neat and clear-cut categories of people who require adult social care and support. Instead, there is a complex interplay between mental and physical conditions that has to be taken into account when deciding the best care and support package. For example, people with learning disabilities have a higher prevalence of mental health problems compared to those without[1]. More than 15 million people – 30 per cent of the UK population – live with one or more long-term condition(s) and more than four million of these will also have a mental health problem[2].

Our first full chapter therefore starts with the voice of people with experience of our care and health system, illustrating the diversity of people supported by the social care and support sector. These are powerful stories, which at times are hard to read. They expose – in the most human terms – the consequences of a system that lacks all the tools required to be the best that it can be for people that need it. They are also a challenge to us all to keep this subject firmly on the public and political radar.

As you read through our green paper and consider the questions it raises, we encourage you to return to these stories as essential grounding in why this debate is so fundamentally important to the future of people across our country, and our country itself.


Josie’s story 

At the moment, I get three short visits a day from a care worker to cook my meals, help me shower, and keep the house clean.

I get two hours every two weeks ‘social’ time which at best on a good day gets me over to the park and back. It’s not long enough to join in any activities but I value this time hugely as it’s uninterrupted time with actual real conversation, not just “what do you need to eat?” or similar.

My basic needs are met – I’m clean and I’m fed. But I haven’t got enough support to actually get me out of the house. It means that some days I barely get to speak to anyone, let alone have a social life. If I get an infection and have to ask my carer to pick up a prescription, I don’t get to have a shower that day. There just isn’t enough time. A little more support – for example, a support worker to go with me to new places – would give me so much more opportunity to take part in life, but at the moment that feels like an impossible utopia!

People like me, who were professionals and could make a contribution with the right support, are being cut out of the workforce. Working in an office or a hospital isn’t really possible for me, but I still have skills and experience that I would like to use, if I had the means of doing so. In the end, it is a question of equality. I don’t feel like I’m living, just existing.

Reproduced with the kind permission of Scope


Vicki and Keegan’s story

I was diagnosed with Muscular Dystrophy when I was young. As a degenerative condition every day is an increasing challenge.

I am now 36 years old and I need assistance to get out of bed, to eat, to use the bathroom and to leave the house. I need someone with me day and night.

My partner Keegan cares for me around the clock. If he didn’t, I would need a full-time carer or I would have to live in a residential home. Yet, Keegan is only paid for four hours a day and we have no funding for respite. I worry every day about what would happen to me if he couldn’t look after me anymore. He is my independence and my dignity.

In the past I have been offered some support to help me at home but as my condition worsens and my needs grow, I am being offered less and less because there is no money available to help me. Something as simple as getting a hoist to help me in and out of bed has become a battle. At times, this has meant that my more preventable symptoms have got so bad I have had to call an ambulance. I am only too aware that every minute I spend with paramedics is taking this costly service away from someone else who needs it, but I am left with no choice. Sadly, I am not the only person I know who has to do this and while I want to feel positive about the future, if I keep being told there is no money for the help me and Keegan need, we feel totally helpless.

It’s hard enough living with this condition without feeling like I have to face a challenge every time I ask for help. The sad thing is none of us know when or if we will need people to care for us one day so it is vital that everyone is aware of the issues before it is too late to do anything about it.


Glyn and Kristin’s story

My wife Kristin is just 47 years old but has had Multiple Sclerosis for 17 years. Each year, as it inevitably progresses, it becomes a bigger aspect of our life together.

I was caring for Kristin at home but just two years ago this became too much and I collapsed under the strain. We had carers coming in morning and night to get Kristin in and out of bed, but all other hours of the day I was left to care for Kristin on my own.

At the same time, I was trying to run my own business to supplement the modest carer’s allowance I received. I got no respite and was exhausted.

Kristin fell ill with a simple respiratory issue and got stuck in hospital for three months because she wasn’t allowed to leave until a package of full-time care was in place. When she finally left hospital she came home for four months until I collapsed looking after her with no respite. She was then placed in an NHS funded nursing home under the continuing healthcare scheme. I think she could have come home full time with the right care in place or if the money being spent on her care home was invested in making the right adaptations to our home. Devastatingly, the council couldn’t pay for all of the changes we needed and I couldn’t fund it on a reduced income so we had no choice.

It’s so hard for people who are not in our situation to understand the enormous impact this has had on our family. Kristin is the most important person in the world to me and I still find it hard that instead of spending our lives together she is left feeling isolated in a home where she is the youngest person by many years. I see her every day, but I miss her terribly and feel so guilty every time I leave her there.

Before Kristin became ill we had never considered that we might one day rely on carers, which terrifyingly made us realise this could happen to anyone – young or old. What is important is that we have a system that makes sure people get looked after in the way they want because that’s the very least we all deserve.


Sandy’s story

Mum was diagnosed with dementia in her early 70s. Dad cared for her at home for many years until the stress became too much and he had a heart attack. We then tried to access home assistance from the local council, but this proved impossible.

The only real option was to move Mum into a care home. Dad sold the family home and bought a small bungalow nearby. We all contributed to the top up fees for over seven years, amounting to hundreds of thousands of pounds. We then tried to access NHS funding for Mum, who was by now in an advanced stage of dementia. [She was] doubly incontinent, no longer able to communicate verbally and unable to feed or dress herself. The funding was refused. We couldn’t understand why.

Eventually we negotiated social care funding for Mum. However, the amount the council pay is significantly less than the fees charged. This subsidisation by private payers is another example of a system riddled with inequalities.

Our Mum is elderly, vulnerable and unable to vote. She no longer has a voice and has become effectively disenfranchised. So we must speak for her and others like her. Society is judged by its treatment of the elderly and this state of affairs is nothing less than shameful. Dementia is an illness. We cannot throw our hands up and say it’s all too difficult.

Governments can no longer turn a blind eye and say we can’t afford it. We have to act now to ensure that people affected by dementia are treated fairly and properly. We must fund a social care programme which will allow the most vulnerable in our society to be cared for in an environment which allows them to live with dignity. Government must step up to the plate and be honest with the electorate. This situation is not going to go away. Everyone affected by dementia, either those living with the disease or their carers and relatives, deserves so much better.


Steve’s story

I was living with my partner, running a B&B when I had a serious stroke and later two minor heart attacks. After four months in hospital, I was depressed, frail and my memory and cognition had deteriorated.

We knew I needed more support with daily living than my partner could provide. I was unable to return home and it made me frightened about my future, with clinicians uncertain about my further recovery.

I wanted to live locally, so I could continue seeing my partner and I missed my dogs. The Shared Lives scheme matched me, with two trained and approved Shared Lives carers who shared my sarcastic sense of humour, had dogs, and lived close by. They helped me through it all. When I arrived at their home, I never dreamt of being so independent again. I couldn’t walk down the drive. Now I can nip up to town.

My Shared Lives carers helped me gain strength and confidence, walking a little bit further each time, until I could walk independently again. They helped me adapt to my memory loss with strategies for managing money and banking, and supported me to make meals and manage my diet. Since then I have booked a holiday and travelled on my own. I am very optimistic about life and planning a move into my own flat.

Without the Shared Lives scheme I would have undoubtedly spent longer in hospital, had less choice about where I lived, and had a slower recovery. It is so important that money is available to ensure that schemes like this exist.


Lucy’s story

My daughter Lucy has a learning disability and spent 12 years in hospital after being sectioned under the Mental Health Act.

Lucy went through a very stressful time in her life which was when things started to go wrong for her. This caused her to suffer from severe anxiety. She began having more epileptic seizures. When she was hospitalised, we struggled to get her out. As a family, we didn’t know what to do or where to get help. After 12 long years Lucy came out of hospital, supported by the local commissioner and a care and support provider who worked with Lucy and us to plan what she needed and wanted from her life.

They worked with us and Lucy while she was in hospital and supported her transition back into the community. They really helped us to know what was possible. They really listened to us.

Lucy now lives in her own bungalow, close by to us. She is supported by a staff team that she chose and who are trained to support her in a way that works for her.

When she first came home she was very shy and didn’t go out much. Now her confidence has really grown and Lucy has joined the empowerment steering group for the Transforming Care programme, to help improve services and support for people with a learning disability, autism or both. She is learning to travel independently and loves to do the things that we all take for granted – like going out and about, visiting us but most importantly her niece, and looking after her cat, Smudge.

Good support is about saying that people have a right to a good life in the community with the right support. Lucy is doing really well, but there are always worries in the back of your mind that something will change and the support might stop or get less. We need to recognise that good support now will prevent more expensive hospital stays down the line.

References

[1] Cooper, S.A., Smiley, E., Morrison, J., Williamson, A., & Allan, L. (2007). Mental ill-health in adults with intellectual disabilities: Prevalence and associated factors. The British Journal of Psychiatry, 190, 27–35.

[2] Naylor, C., Parsonage, M., McDaid, D., Knapp, M., Fossy, M., & Galea, A. (2012). Long-term conditions and mental health – The cost of co-morbidities. London: The King’s Fund, & Centre for Mental Health.

What our partners have said

We’d like to thank our partners from across the sector for their thoughts, comments and input into the green paper. Here’s what they have to say…

Foreword

High quality social care and support helps people live the life they want to live. It helps bind our communities, it sustains our NHS and it provides essential economic value to our country.

Executive summary

While it is true that social care and the NHS are inextricably linked, it should be seen an essential service in its own right and the people who work hard to deliver the service should be seen as just as valuable as staff in the NHS.

Who is this green paper aimed at?

Questions about the future of adult social care and support, and the wider changes we need to make to our care and health system to improve wellbeing, should be everyone’s business.

4. The options for change

Why has it proved so hard for successive governments to deliver sustainable long term funding for this crucial service?

5. Adult social care and wider wellbeing

If we are to really tackle the full extent of future demand with quality services we need to refocus our efforts on intervening earlier and preventing needs developing in the first place.

6. Adult social care and the NHS

Joining up care and support and intervening and offering early support to keep people well is a more efficient use of resources but efficiency alone is not enough.

8. Have your say

Answer the questions relevant to you and your organisation and submit your views to be added to our research.