NHS Continuing Healthcare

Ayoub Khan Excerpts

Wednesday 25th March 2026 Westminster Hall

[Ayoub Khan (Birmingham Perry Barr) (Ind)]

I beg to move,

That this House has considered NHS continuing healthcare.

It is a privilege to serve under your chairship, Mrs Harris. The continuing healthcare—CHC—system should represent the very best of our national health service, offering 24-hour, round-the-clock care for approximately 50,000 of the country’s most vulnerable adults, but at the moment the reality is quite the opposite, exposing some of the system’s innermost failures.

For those who may be unaware, continuing healthcare is a package of care arranged and fully funded by the NHS for adults with significant ongoing health needs. Crucially, eligibility is based not on diagnosis, but on whether a person has a “primary health need”. If they qualify, the NHS covers all their care costs; if they do not, they are left to navigate a complex and means-tested social care system, often at catastrophic personal cost to their carers and family.

CHC was created to protect those with the most severe and complex needs, but today it often does the opposite: it confuses, delays and denies. CHC is a lifeline for people with the most complex, severe and often life-limiting conditions, making it all the more crippling when funding is stripped at short notice without a clear reason, and yet there is a body of evidence, which is growing year on year, to suggest that the system is unfair, inconsistent and often inaccessible to those who need it most.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Gentleman for bringing this debate forward. I spoke to him beforehand, as I always try to be helpful in my contributions. He may only now be aware that in 2023, the High Court in Northern Ireland determined that the previous Northern Ireland continuing healthcare policy breached obligations regarding equality for older people—some of the very things that he is referring to. As a result, the Department of Health in Northern Ireland is in the process of reviewing and developing new, fairer guidance. Does he agree that, UK-wide, this must be tailored care, with an understanding that one size simply cannot fit all?

[Ayoub Khan]

I totally agree about the need for parity of service across the United Kingdom. That must be not only the right thing, but the only thing to do.

A recent report from the Nuffield Trust describes CHC as an “all or nothing” affair for applicants that creates a cliff edge between carers getting full NHS funding and paying out of pocket to care for loved ones. But although chance certainly plays a role in determining who gets funding and who does not, there is also a sinister practice at play—one that violates the very principles of our health service and inflicts unnecessary hardship on families across the country. That is the ever more common practice of revoking funding, and making vulnerable people appeal and fight for the right to retain the funding they should have had all along. We see the same pattern emerging with benefit claimants and home-to-school transport for 16 to 18-year-olds with special educational needs and disabilities. In the vast majority of cases, after all the time and energy wasted by applicants and assessors, the decision is overturned.

[Shockat Adam (Leicester South) (Ind)]

The hon. Member is making a powerful speech. Does he agree that, during these very difficult times, families want to give their loved ones who are not well all their attention, but these situations are usually so adversarial, involving lengthy legal processes that cost local authorities hundreds of thousands of pounds, only for the decision to be overturned and the family to win in the end?

[Ayoub Khan]

I absolutely agree. There is an unnecessary burden on families to start off with, and when the appeal process can take months and it is difficult for families to secure representation—they may end up representing themselves—that causes them further anxiety. I agree that there needs to be a review of the whole system, because it is a further bottleneck in an already very stressful situation for families. I will come to an example of a family I am trying to assist in that regard.

In many cases, decisions are overturned and the status quo is restored. We must be honest about what is driving this. It is the same culture of cuts and austerity, sweeping across this Government and the previous one, that is to blame for the crisis. Independent analysis shows that CHC spending decreased by 42% in 2024 compared with previous years, even as need continued to grow. That is not because people are suddenly less ill, but because access is being constrained.

Investigations have also revealed that private companies are being contracted to review CHC eligibility and, in some cases, to reduce care packages, raising serious ethical concerns about profit being tied to cuts in vital care provision. A system where decisions are not always driven by clinical need but by cost containment will inevitably fail to protect and care for some of our most vulnerable individuals.

My constituent Daniel has experienced the injustice of the CHC process at first hand. He suffers from severe learning difficulties, autism, anxiety and behaviour of distress, and is cared for by his elderly parents, Linda and Dave. In order to receive the proper care, Daniel is supported every day by six personal assistants, all of whom are being paid thanks to CHC funding. After an annual review in January last year, it was confirmed that his condition had not changed and therefore his funding ought to continue, and yet, since a spontaneous and unwarranted review of the decision, Daniel’s eligibility has been under excessive and unreasonable scrutiny. The reassessment directly contravened the national framework for CHC, which states that a full reassessment must be arranged only if there is

“clear evidence of a change in needs to such an extent that it may impact on the individual’s eligibility”.

The saga was concluded two weeks ago when, despite providing no clinical rationale for the “significant change” in Daniel’s medical needs, the care board revoked his funding, leaving his parents to foot the bill for his care. For more than a year, Linda and Dave have carried on their fight against the care board’s impropriety, which has understandably come at a great financial, emotional and personal toll, all while continuing to care for Daniel. Unfortunately, Daniel’s story is neither exceptional nor surprising. It shows how many of those reliant on Government support are being stripped of it in the blink of an eye.

The stories of Daniel and so many others show exactly what is wrong with the system. Since 2017, despite an ageing population and increasing complexity of need, the number of people eligible for CHC has fallen by more than 9%. Over the same period, the proportion of people found eligible after a full assessment has dropped dramatically, from around 31% to just 18.6%. That means that more people are being assessed, but fewer are receiving support.

For families, that often means a gruelling process, characterised by a mire of lengthy assessments, appeals, delays and uncertainty, at the most difficult time of their lives. Confusion, exhaustion and distress are mainstays of that process. Even for those who are fortunate enough to be granted CHC funding, it can be withdrawn upon review, leaving families in a state of permanent anxiety that they could be plunged back into crisis at any moment.

Behind every statistic is a family caring for a loved one with dementia, a neurological condition or even a severe disability—a family forced to give up work, drain their savings or even sell their home, all while navigating a system that is rigged against them from the start.

[Iqbal Mohamed (Dewsbury and Batley) (Ind)]

I congratulate my hon. Friend on securing this important debate. I wholeheartedly agree with him, in particular about his constituents who had the support that their child needed for many years, had an annual review that reconfirmed that that support was necessary, and then suddenly, out of the blue, faced a challenge by some new body or process. Does he agree that there should be a clear, transparent process that is easy to understand by families who go through it, that there should be clear checks and balances to ensure that families receive a fair hearing, and that, when support is agreed and secured, it should be maintained until the next formal review is required and the criteria and conditions have changed?

[Ayoub Khan]

I wholeheartedly agree. One of the difficulties in Daniel’s case was that an assessment found that there was no material change in the level of support that he required, but a reassessment was conducted subsequently, and the funding was then withdrawn. I met Daniel, and I felt so sorry for his parents, who are now struggling because of the withdrawal of the funding. It is shocking that someone can sit somewhere and make a desk-based reassessment of someone’s condition and then strip them of funding. I am confident that the family will ultimately secure funding, but the stress that they are going through is simply unacceptable.

I urge the Minister to review Daniel’s case. I recall writing to him on this very matter in July last year. He replied that the operational delivery of CHC is the responsibility of integrated care boards. Care boards do indeed have delegated autonomy to make funding decisions, but they must follow national guidance, and the Government have the power to act when those duties are breached. I would welcome the Minister’s reflecting on his stance on this matter. At the very least, will he meet me, Linda and Dave so that he can gain insight into how the system is failing people like Daniel? Caring for our loved ones should not be subject to a cliff edge or an all-or-nothing gamble. If we want to build an NHS fit for the future—one that delivers care closer to home and puts patients first—then fixing CHC must be a core part of that mission.