Latest News
DHSC publishes Casey Commission Terms of Reference
May 6, 2025
On Friday, DHSC published the long awaited Terms of Reference for Louise Casey’s social care commission.
In response, the three co-chairs of the Care and Support Alliance; Caroline Abrahams CBE, Charity Director at Age UK, Jackie O’Sullivan, Executive Director of Strategy and Influence at Mencap, Emily Holzhausen CBE, Director of Policy and Public Affairs at Carers UK, said:
““It’s great news that the terms of reference for the Casey Commission have now been published and that the work has got formally underway.
“We are pleased that Baroness Casey is being given the scope to explore all the issues that require examination as part of the process of creating a sustainable National Care Service worthy of the name. However, we are dismayed that the terms of reference the Government has set refer to the need for “recommendations that can be implemented in a phased way over a decade”, suggesting that we will not get a fully reformed social care system until 2036. That’s far too slow, and it means that social care transformation is being put off for two parliaments, possibly longer. This delay is particularly alarming in light of the rapidly growing demand for social care driven by demographic changes with people living longer, often with more complex needs. Estimates suggest that at least 1.7 million more adults will require social care in the next 15 years. Especially given that some other similar countries, like Germany and Japan, overhauled their care systems more than twenty years ago now, it’s unacceptable that in England older and disabled people and their unpaid carers are being asked to go on waiting.
“We welcome the fact that Baroness Casey’s first act was to convene a roundtable of people in receipt of care and unpaid carers. It was exactly the right place to start and we hope this approach of learning from those with direct experience of care – professionals and providers as well as recipients and their families – will be a prominent feature of how the Commission operates.
“We’ve waited a long time for an initiative like this Commission and as the Care and Support Alliance we look forward to supporting it in every way we can.
“We make no apology however for the fact that we will also continue to put pressure on the Government to act more immediately wherever this is feasible; for example by progressing a Fair Pay Agreement that improves the terms and conditions of care professionals, and by supporting the care workforce in other ways too. Ministers have a continuing responsibility to act, even though the Casey Commission has begun.”

Chancellor – Don’t ignore social care in the Budget
October 24, 2024
Dear Chancellor,
As Co-Chairs of the Care and Support Alliance, on behalf of our members, we are writing to you ahead of the upcoming Autumn Budget to raise our concerns about the levels of funding available for the delivery of adult social care in England.
The Care and Support Alliance (CSA), a coalition of over sixty of England’s leading charities, campaigns alongside the millions of older people, disabled people, and their unpaid carers who rely on adult social care.
A group of over sixty older people, disabled people, unpaid carers, care professionals and Care and Support Alliance colleagues gather in Westminster to tell the Chancellor – don’t ignore social care.
Currently, at least 2.6 million people have to go without the care they need. Social care provision has slipped far below acceptable levels, and the lack of available services is having very real consequences. Consequences not only for the individuals whose lives are diminished and their families and friends who care for them, but for public services too – especially the NHS.
Social care in England remains chronically underfunded and for far too long has been ignored by successive Governments. With an ageing population, and a growing number of disabled people of working age needing care, demand is increasing yet funding is not keeping pace. Workforce vacancies remain stubbornly high and public satisfaction with social care is at its lowest ever. Too often, unpaid carers are left to pick up the pieces with little or no support, with huge implications for their health and wellbeing, and their ability to participate in the labour market.
Understanding the full magnitude of social care funding requirements is essential to developing a workable, sustainable long-term solution to ensure that older people, disabled people, and unpaid carers get the social care they have a right to. While the Health Foundation estimates there is at least an £8.4 billion annual funding gap for adult social care, the previous Government asserted that social care was adequately funded but refused to publish the maths. We are also concerned that in the development of Equality Impact Assessments for previous Budgets and Spending Reviews, inadequate information was considered by the previous Government regarding the social care funding sufficiency test – including whether evidence was ever considered in relation to unmet need. A different approach is sorely needed.
Your upcoming Budget is an opportunity for the Government to take steps towards addressing what the Secretary of State for Health and Social Care, and Minister of State for Care, have both recently described as a ‘broken’ system. As such, we, and the people we represent, urge you to act decisively to:
– Address the shortfall in social care spending and put in place a long-term funding commitment to meet future demand. Piecemeal pots of funding will not deliver the change, services, or stability the sector and care users need.
– Provide additional funding to enable local authorities to tackle social care assessment and carer’s assessment waiting lists, so that they can fulfil their statutory duties under the Care Act 2014.
– Address the core issues facing the social care workforce – including pay conditions and levels, career pathways and skills recognition – as a matter of priority.
– Remove social care charging entirely for working-aged disabled adults, so they do not have to part-fund their care from state benefits designed to pay for daily living costs, like food and heating.
We’re pleased that you are thinking about long term ‘once and for all’ solutions to what has been a political football kicked into long grass by previous governments and stand ready to support the work of the Government in any way we can. This should be accompanied by more support for families and unpaid carers, including the development of a new National Carers Strategy, investment in carers’ breaks, the introduction of paid carer’s leave, and a rapid review of Carer’s Allowance and other social security benefits that carers can claim.
While we appreciate that the Government has inherited an unfavourable economic situation, investing in social care need not be seen as a hindrance to economic stability. Instead, it must be regarded as a productive investment that offers a significant opportunity to support the Government’s health and growth missions. For example, supporting people – both those of working-age who draw on care and support, and unpaid carers – to enter the labour market or return to work, would bring clear economic benefits to the state. Significant cash savings would also accrue to the NHS from providing good care out of hospital and preventing long, costly hospital stays.
The 2010s proved to be a ‘lost decade’ for social care reform; continuing to underfund social care and delaying wider reforms only makes it an increasingly costly prospect. We cannot afford to make the same mistakes again.
Thank you for your consideration.
Yours sincerely,
Emily Holzhausen CBE, Director of Policy and Public Affairs, Carers UK
Jackie O’Sullivan, Executive Director of Strategy and Influence, Mencap
Caroline Abrahams CBE, Charity Director, Age UK
As the incoming Government restates its commitment to creating a National Care Service, new CSA analysis reveals the massive postcode lottery for care facing the public today
July 23, 2024
Your chances of getting vital life changing care if you need it vary hugely across England in what is a shocking postcode lottery. This is the stark finding of research by the Care and Support Alliance (CSA) which represents more than 60 leading charities campaigning for decent care for all those who need it and their unpaid carers.
The research shows that across England, you have the greatest chance overall of having your request for care accepted if you live in North East, and the lowest if you are in the West Midlands. However, within all regions there are big variations between local authorities: if you need care and support to help you live your daily life, your chance of having your request refused varies from 85% in some local authority areas to 12% in others. In London for example, the rates of requests being rejected by local authorities within just a few miles of each other range from 84% to just 20%.
The greatest variation within regions is in London, where there is an enormous 64% gap between local authorities in the rate of requests for care being declined. The least variation is in the East Midlands, but this still stands at a significant 31%.
Click here to find out about care in your area
The CSA says that these extreme variations are the result of a perfect storm at a national level of rising demand for care, rising costs, regionally specific recruitment and workforce challenges and strained local authority budgets, all compounded by years of delays to social care reform.
In addition, there are local factors which can amplify the variation. Some councils are better able to raise revenue locally than others, to help them compensate for the cuts in central Government funding they have experienced over the years. Added to this, the way funding is allocated to local authorities hasn’t been updated for some years, meaning the allocations no longer always reflect the needs of the current local population. Local authority duties to provide social care are set out in law and a person with a given level of need and resources ought to receive a broadly similar response everywhere, but at the moment this is clearly far from the case.
The analysis is released as a new CSA tool is launched which shows people how national government inaction on social care is having a real impact in their area, inviting them to join its campaign: https://act.careandsupportalliance.com/page/151615/action/1
The CSA is urging the new Government to urgently get to grips with the desperate problems individuals and families are facing accessing social care. It must act quickly so older and disabled people can get the care they need. Good social care supports people to live their lives: to get up and out, work, see the people they love, be independent. Yet currently at least 2.6 million* people go without the care they need.
Government ignoring social care would be a ‘betrayal’ of British people, warn charities and 24,000 people
June 21, 2024
Today more than 24,000 people and 54 organisations are calling on the next Government to make sure it prioritises reform and funding for social care, following decades of political inaction.
In an open letter, addressed to all party leaders, organised by the Care and Support Alliance, which represents over 50 of Britain’s leading charities, highlights decades of underfunding and lack of action has left care in a shocking state. The letter says:
“Millions of older and working aged disabled people and their carers desperately need a social care system that works, and a failure to act would be a betrayal.
“For social care it’s time for actions, not just words. Good social care supports people to live their lives. To get up and out, work, see the people they love, be independent, but currently at least 2.6 million people go without the care they need.”
The Care and Support Alliance (CSA) chairs, Caroline Abrahams, Charity Director at Age UK; Emily Holzhausen, Director of Policy and Public Affairs at Carers UK, and Jackie O’Sullivan, Acting CEO at Mencap said:
“Over the years we’ve had far too much of politicians of all colours over-promising & under-delivering on social care reform, and we can’t go through that all over again. We know that good social care is transformational and it’s tragic to see older people and working age adults deprived of opportunities to live well, and unpaid carers under unbearable pressure to fill yawning service gaps.
“A failure by the next Government to address this long-standing issue would be a betrayal of all those who rely on care and their families, while also setting up the NHS to fail. The prize from successful social care reform is too important for the issue to be put in the ‘too difficult box by our politicians, it’s time for them to front up and act.”
Read the full letter:
Dear Party Leader,
Show Us You Care.
We’re writing to you to say for social care it’s time for actions, not just words.
Good care supports people to live their lives. To get up and out, work, see the people they love, be independent as long as possible. Yet currently, at least 2.6m people go without the care they need. Social care provision has slipped far below an acceptable level and is having very real consequences for millions of older and disabled people and their unpaid carers.
Promise that you will make change happen in the next Parliament, come up with sustainable funding and support the social care workforce. Millions of older and working aged disabled people and their carers desperately need a social care system that works, and a failure to act would be a betrayal.
The Care and Support Alliance of over 50 charities, and everyone who has joined this letter, agree that to make social care work for people, we need a government that:
- Addresses the shortfall in current social care spending and puts in place a long-term funding commitment to meet current and future demand. Piecemeal pots of funding will not deliver the change, services or stability the sector and care users need.
- Addresses the core issues facing the workforce, including pay, conditions, career development and skills recognition, as part of a new, fully funded social care workforce strategy.
- Enables local authorities to tackle social care assessment and carer’s assessment waiting lists through enhanced dedicated funding.
- Develops a new National Carers Strategy including investing in carers’ breaks, introducing paid carer’s leave, and urgently reviewing Carer’s Allowance and other social security benefits carers can claim.
- Removes social care charging entirely for working-aged disabled adults so they don’t have to part-fund their care from state benefits designed to pay for daily living costs, like food and heating.
If you are in the privileged position of leading the next government you could transform the lives of millions of older and disabled people and their carers. You could ensure our care workforce is recognised and valued.
It’s time for actions, not words: please Show Us You Care – commit to reform social care once and for all.
From
- Kari Gerstheimer, CEO, Access Social Care
- Leo Sowerby, Chief Executive, Affinity Trust
- Caroline Abrahams CBE, Charity Director, Age UK
- Jolanta Lasota, Chief Executive, Ambitious about Autism
- Deborah Alsina MBE, Chief Executive Officer, Versus Arthritis
- Kathy Roberts, Chief Executive, Association of Mental Health Providers
- Clive Parry, England Director, ARC England
- Andrew Langford, Chief Executive, British Association for Music Therapy
- Adam Micklethwaite, Director, Autism Alliance UK
- Professor Martin Green, Chief Executive, Care England
- Karolina Gerlich, Chief Executive Officer, The Care Worker’s Charity
- Kirsty McHugh, CEO, Carers Trust
- Helen Walker, Chief Executive, Carers UK
- John Cowman, Chief Executive, Chartered Society of Physiotherapy
- Libby Herbert, CEO, Colostomy UK
- Sally Tsoukaris, General Secretary, Civil Service Pensioners’ Alliance
- Frances Lawrence, CEO, Dementia Carers Count
- Dr Hilda Hayo, Chief Executive, Dementia UK
- Anna Galliford, Chief Executive, FitzRoy
- Steve Veevers, Chief Executive Officer, HFT
- Toby Porter, Chief Executive, Hospice UK
- Jane Townson, CEO, Homecare Association
- Mark Henderson, CEO, Home Group
- Ruth Owen OBE, Chief Executive, Leonard Cheshire
- Jacqueline Cannon, CEO, The Lewy Body Society
- Matthew Reed, Chief Executive, Marie Curie
- Jackie O’Sullivan, Acting CEO, Mencap
- Tanya Curry, CEO, Motor Neurone Disease Association
- Nick Moberly, CEO, MS Society
- Catherine Woodhead, Chief Executive Officer, Muscular Dystrophy UK
- Karen Walker, CEO, Multiple System Atrophy Trust
- Neel Radia, Chairman, National Association of Care Catering
- Caroline Stevens, Chief Executive, National Autistic Society
- Professor Vic Rayner OBE, CEO, National Care Forum
- Kate Henderson, Chief Executive, National Housing Federation
- Jacob Lant, CEO, National Voices
- Georgina Carr, Chief Executive, The Neurological Alliance
- Sarah Miller, Chief Executive, Papworth Trust
- Caroline Rassell, Chief Executive, Parkinson’s UK
- Rachel Power, Chief Executive, Patients Association
- Rebecca Packwood, Chief Executive, PSP Association
- Helen Wildbore, Director, Care Rights UK
- Mark Atkinson, Director General, Royal British Legion
- Matt Stringer, Chief Executive Officer, Royal National Institute of Blind People (RNIB)
- Richard Kramer, CEO, Sense
- Peter Beresford, Co-Chair, Shaping Our Lives
- Kate Steele, CEO, Shine
- Nik Hartley OBE, Chief Executive, Spinal Injuries Association
- Jonathan Senker, CEO, VoiceAbility
- Diane Lightfoot, CEO, Business Disability Forum
- Rhidian Hughes, CEO, Voluntary Organisations Disability Group (VODG)
- Neil Riley, Chairman of Trustees, The ME Association
- Dr Mary-Ann Stephenson, Director, Women’s Budget Group
- Donna Covey CBE, Interim CEO, The Advocacy Project
Along with 24,009 campaigners.
CSA calls for removal of charging for working-age disabled people
June 14, 2024
Remove social care charging entirely for working-aged disabled adults, so they don’t have to part-fund their care from state benefits designed to pay for daily living costs, like food and heating.
One of the specific asks of the Care and Support Alliance, representing over 50 social care and disability charities, is for the next Government to remove social care charging entirely for working-aged disabled adults. Here Jackie O’Sullivan, co-Chair of the Alliance, and acting CEO of Mencap explains why.
It is a common misunderstanding that social care, which supports people to live independently, is free for all those who need it. Sadly, this is not the case. The vast majority of people who need support with daily tasks such as washing, getting dressed, eating or going shopping, will pay for their care. At the CSA, we have been campaigning for social care to be properly funded, so that everyone who needs it can access the care they need without worrying about the cost.
Much of the debate around social care charging revolves around questions of how much older people should be asked to contribute from their assets and/or savings. However, many working-aged disabled adults are also charged for their social care – even where they have no assets and receive no income other than benefits. For this group, the money they receive in benefits can be clawed back by local authorities to part-pay for their social care down to a minimum level or Minimum Income Guarantee (MIG). This MIG sets out the minimum amount of income per week a person must be left with: for older people this is at least £228.70, for adults between the ages of 25 and pension credit age it is £110.60 and for adults aged 18-24 it is just £87.65.
To compound the unfairness, employment income is exempt, which means that the people who rely on benefits are the ones who are penalised the most.
Despite most people wanting to, not every disabled person is able to work, and there aren’t enough employment support programmes to help tackle this. So, given the low rates of employment among disabled people (only 5% of people with a learning disability are in work), this policy causes hardship and poverty. To compound matters, Minimum Income Guarantee rates have only been uprated twice since 2016. Meanwhile, Local Authorities have to spend time and money on assessing people, chasing payments – and even prosecuting people. Imagine how scary this is for people! You’re on a very low income and struggling to pay the bills as it is and then suddenly, you are slapped with a huge bill and threatened with court if you don’t pay up.
A relatively easy win for any new Government would be to end this sort of charging altogether – and that is why it is included in our campaign asks alongside other measures which will directly benefit older people, unpaid carers and care workers.
