Calling for urgent action to fix NHS continuing healthcare funding

20 October 2026

Today, Tuesday 20 October 2026, along with 13 other health and care charities, we’re calling on the Government to launch a full, independent review of NHS continuing healthcare (CHC).

Currently, families facing complex health needs are often being left to navigate a distressing and inconsistent system, fighting for funding and struggling to pay care bills.

Over 26,000 people back petition to fix flaws in NHS CHC

A petition signed by 26,451 people has been delivered to the Department of Health and Social Care, alongside a letter urging Health and Social Care Secretary Yvette Cooper to commit to a review and to publish a clear timetable for its completion.

As well as Muscular Dystrophy UK, the petition is backed by British Polio Fellowship, Carers Trust, Carers UK, Dementia Carers Count, Dementia UK, Huntington’s Disease Association, Lewy Body Society, Pathfinders Neuromuscular Alliance, MS Society, Muscular Dystrophy UK, Neurological Alliance, Parkinson’s UK, Spinal Injuries Association and TIDE – Together in Dementia Everyday.

Action is needed now

The 14 charities say action must begin now, alongside the development of the Government’s proposed National Care Service stressing that people who need care today cannot wait for long-term reform.

Continuing Healthcare (CHC) is a package of care that is arranged and fully funded by the NHS for adults assessed as having complex long-term health needs. This can be delivered at home or within a care home. But the charities warn that flaws in how needs are assessed and how decisions are made leave families fighting for funding whilst facing substantial care bills.

When the system doesn’t work

Emma, who lives with congenital myopathy and has been a wheelchair user since she was very young, suddenly received a letter saying she didn’t fit the CHC funding criteria anymore, after receiving 24-hour support for the last three decades.

“Every aspect of my daily life requires support. I need help to eat, drink, bathe and use the toilet, and I wear a neck brace constantly. I also have respiratory issues, so sleep each night with a ventilator. It’s therefore vital that someone is available to respond to me 24 hours a day.

“For more than three decades, the system worked. But in August 2024, everything changed. I received a letter stating that a multi-disciplinary team had decided I didn’t have a ‘primary health need’ and therefore didn’t qualify for CHC funding. This decision made no sense considering the level of care I’ve required throughout my life. My condition hasn’t improved over the years, it’s got worse! It took over a year for this decision to be overturned, which caused an enormous amount of unnecessary stress and financial loss.”

A full and independent review is needed

Alongside other charities, we welcome the Government’s commitment to establishing a National Care Service in the next Parliament. But making existing NHS funding more accessible is an urgent priority and a key test of its ambition to reform care.

The joint letter from the 14 charities, including Muscular Dystrophy UK, states:

“We urge the Government to commit to a full and independent review of NHS continuing healthcare and publish a clear timetable for its completion. This must begin now, alongside the development of the National Care Service.”