Andy Burnham has now put social care at the centre of his first Labour Party conference as Prime Minister. He has said he wants an NHS-style National Care Service in England, universal and free at the point of use, funded by everyone. Reform will not be rushed: the proposal is expected to go to voters at the next general election, with implementation in the following Parliament. Baroness Louise Casey’s review will help shape how it could work.
But if we are serious about creating a National Care Service, we need to ask a more fundamental question: what is it actually for, and who will hold the power?
People need support to live, not simply support to survive.
I have spent more than four decades campaigning for the right of disabled people to live independently and participate fully in society. The most important transformation in social care comes when power moves from services to the people who use them.
Direct Payments and personal assistance were born from that struggle. They gave disabled people choice and control over how their support is organised, who provides it and how they live. This is not peripheral to a National Care Service. It should be at its heart.
The new Pathfinders Neuromuscular Alliance Social Care Report 2026 provides a stark reminder of why. Based on a survey of 54 people with neuromuscular conditions and family members, it describes a system where assessed need is squeezed by inadequate budgets. Around 65% had appealed decisions about their care package or allocated hours, while 77% wanted greater transparency about those decisions.
People describe care packages providing the bare minimum for survival but failing to support comfort, dignity, independence or quality of life. Some are unable to leave home except for medical appointments. One person spent around three years fighting between social care and NHS Continuing Healthcare before funding was agreed.
This is not independent living. It is a system managing people’s decline rather than enabling them to live.
Burnham has also highlighted the social care workforce, describing care workers as providing care with “huge humour and humanity and skill” while being paid poverty wages. That concern must extend to Personal Assistants. For many disabled people, PAs make independent living possible, yet people employing them are left to solve a workforce crisis themselves.
Seventy per cent of Pathfinders respondents said recruiting and retaining PAs was always or sometimes difficult; 65% identified pay as a major barrier. Nearly half said PAs typically stay for only one to two years, while more than 60% reported absorbing additional employment costs their care packages do not cover.
The House of Lords Adult Social Care Committee’s report, A “gloriously ordinary life”: spotlight on adult social care, argued for greater choice and control, personalisation and the ability to live fulfilling lives in the place we call home.
My work on the Joint Committee on Human Rights inquiry into independent living took this argument further. Our report identified Article 19 of the UN Convention on the Rights of Persons with Disabilities as establishing the right to live in the community with choices equal to others, including access to personal assistance and community support. It concluded that the existing legal framework was inadequate to ensure that right in practice.
More than a decade later, the Pathfinders evidence shows how far we still have to go.
So yes, Prime Minister, let us build a National Care Service. But let us not simply nationalise the existing problems.
Burnham has spoken of universalism, shared contribution and NHS principles. The next question is what happens inside that system. Universal access will mean little if people still lack genuine choice and control. A National Care Service must not become a larger bureaucracy making decisions about people; it should give people greater power over their own lives.
The Pathfinders report calls for consistent eligibility, assessment and provision, transparency, independent appeals, proactive adjustments as needs change, recognition of Direct Payment PA employers and a national minimum pay framework for Personal Assistants.
That is the direction a National Care Service should take: consistency and fairness, but significantly also redistribution of power.
Disabled people should not have to fight year after year to prove they need the support required to live. They should not have to struggle with a care package designed around a threadbare council budget rather than their assessed needs. And they should not have to choose between independence and poverty.
Burnham has said that broken social care will ultimately break the NHS, and that he is prepared to take political risks to fix it. That commitment now needs to be matched by a clear vision of social care as a foundation for citizenship, independence and participation — not simply a safety net.
The system needs more money, but it needs a change of approach just as much.
The real transformation will come when government changes the power dynamic in social care. If Andy Burnham’s National Care Service can do that, it could be genuinely historic: a new social contract between those who use and experience social care, the wider community and the state.
The prize is not a life organised around care, but a life in which care enables all citizens to live, participate and flourish.
