Into Perspective: Receiving adult social care

What is it like to draw on adult social care today?

On Monday 21st March, the Adult Social Care Committee held its third public evidence session, to explore the current adult social care system with a panel of individuals receiving social care. The session examined the changes that people with lived experience would like to see made to services. Topics included the ‘invisibility’ of adult social care, the assumption underlying adult social care that individuals have family or friends who can provide unpaid care and support, and the relationship between unpaid carers and those for whom they care. CMM has been fortunate enough to receive input for this feature from two of the session’s contributing organisations as we aim to get a greater understanding of the adult social care sector from the people who draw on its services, against the backdrop of reform.

The issues

It has been widely documented that adult social care has had its weaknesses identified by successive Governments, all of whom however have failed to introduce meaningful reform to improve the lives of people drawing on the sector. In its 2019 report, ‘What’s your problem, social care? The eight key areas for reform’, The King’s Fund outlined the sector’s fundamental shortcomings at the time. Although steps have been taken by this Government to address these issues through proposed reforms, concerns remain that the sector will continue to be ill equipped to meet the needs of people drawing upon it. Of those issues highlighted in 2019 by The King’s Fund, those most applicable to people drawing on the sector are unmet need – people going without the care and support they need; a decline in the quality of care; disjointed care – delayed transfers and lack of integration with health; and a postcode lottery – meaning unwarranted variation in access and performance.

What has been done?

In December 2021, Government published ‘People at the Heart of Care – Adult Social Care Reform White Paper‘, its long-awaited plan for reforming the sector. The White Paper focuses in part on empowering people who draw on care, unpaid carers and families. Key ambitions outlined include an increased presence of user-friendly information and advice that is inclusive of communication and accessibility needs, and empowering people to know what their rights are and where to get information and advice on all the options for health, care and housing. Government’s vision for people drawing on adult social care also promotes a greater understanding of the local support that is available and that tailored information and advice is provided to support people that may be caring for someone else. Amongst other reforms set out in Government’s ‘Building Back Better: Our Plan for Health and Social Care‘, and ‘Joining up care for people, places and populations‘, there is an emerging framework designed to improve the experiences of people drawing on the sector.

The future

A recent webinar accompanying the co-published report ‘Universal Quality Social Care‘, saw Anna Severwright, a convener of Social Care Future, discuss the importance of keeping people drawing on adult social care at the centre of integration between health and social care, especially in the case of commissioning services that genuinely serve the interests of individuals in their local communities. Indeed, Social Care Future is a growing movement, aiming to challenge and change the present through action at all levels to close the gap between ambition and reality. With reform gathering momentum and a sector that will continue to demand accountability from Government, the future holds great potential for people drawing on adult social care if the right steps are taken.

Hanging on by a fingernail

Tens of thousands of disabled people still can’t access adequate or any social care. Family carers are filling the gaps, often at breaking point. For disabled people who don’t have family or friends who can help out, the risks for health, safety and wellbeing are substantial.

The lack of social care often results in disabled people being hospitalised as there is no alternative care provision. People are often stuck in hospital for long periods, piling pressure on the NHS as it struggles with the pandemic and backlogs for routine appointments. The pandemic saw social care continue to buckle even as Government announced an extra £2.9bn for crisis support. While it sounds vast, this does not match ongoing need.

The system also fell foul of Brexit, with many foreign care workers returning home to the EU before we left it, although Government, in a move to plug severe staff shortages, later expanded the Health and Care Worker Visa Scheme to include such workers. However, the situation for thousands of disabled people is far from fixed. We often hear about the plight of older people, which is ever-present, but alongside them, disabled children, young people and working-age adults are still missing out on essential support.

Government recently proposed plans to overhaul social care, announcing a lifetime cap (£86,000) on an individual’s personal care costs. The proposal was largely based around protecting older people who had already built-up assets and owned a home.

The same applies to working-age adults who have not had the opportunity to build up any wealth or assets. To qualify for free care, they must reach the cap, in essence, losing a decade or longer paying for social care charges from their benefits before they can even begin to think about building a life for themselves. Disabled people must not be put in a position where we must use welfare benefits that enable us to survive to pay for social care instead. It remains to be seen what the impact of the policy will be – I think it will leave thousands hanging on to solvency by a fingernail.

Dan White, Policy and Campaigns Officer, Disability Rights UK


Something’s not right

For me, it’s like playing cards with a six-year-old who wants you to play their made-up game that has 156 rules… that keep changing. Above all, it’s exhausting.

We all know and love our NHS. We all have our lived experience, even if it is just going to our GP. We know what it stands for and we know how we expect it to work. However, the average person on the street generally doesn’t understand social care or expect it to touch their lives. Imagery around social care is divided between people with their arms round an older person or headlines about children failed in the care system.

This is linked to how society sees older and disabled people and how we value their lives. We don’t assume that an older person wants to stay in their own home, that a young learning-disabled woman wants to have a baby, that someone with a long-term mental health diagnosis might hold down a position as a senior executive (or a social worker!), and that to do this, they might need to draw on the support of social care. But, and this is the key, in ways that work for them.

In most aspects of day-to-day living, we are encouraged to dream about how our lives could be better, about aspirations and ambitions, but social care focuses on needs and eligibility.

It is transactional, time and task based and intentionally rationed. It operates from a Blue Peter-like principle: we’ll assess your need, and you can have a service we prepared earlier. Sorry if it doesn’t fit
that well. Or you can of course have a personal budget that you can take as a direct payment, but the system is going to have lots of hoops you have to jump through and rules about how that budget gets spent.

Last month, a panel of professionals spent three meetings discussing whether or not a specific item costing £1,200 should be included in my daughter’s £120,000 per year budget. And the daft thing is, when I work with social care practitioners, they’re often pretty miserable too.

Something’s not right.

Tricia Nicoll, Director, Tricia Nicoll Consulting

About Dan White

Dan White is policy and campaigns officer at Disability Rights UK. He lives with a hidden disability and is a carer and proud dad to his daughter Emily who is a wheelchair user with her own campaignin…

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g history. He is also an author, columnist and broadcaster.

About Tricia Nicoll

Director at Tricia Nicoll Consulting and collaborator with Social Care Future. Passionate inclusionist (in education and general life), glass always more than half-full, mum of two young autistic peop…

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le, lover of cats, red wine and big chat. Long term avoider of mental health services, irritatingly opinionated and above all, committed to the cause of persuading services to work in ways that help p eople get gloriously ordinary lives, rather than get in the way of them.

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