NHS Continuing Healthcare

Iqbal Mohamed Excerpts

Wednesday 25th March 2026 Westminster Hall

[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.

--- Later in debate ---

[Iqbal Mohamed]

It is the responsibility of ICBs to administer and provide this support, but does the Minister share my concern and that of my hon. Friend the Member for Birmingham Perry Barr (Ayoub Khan) that the involvement of private contractors in eligibility reviews may not be appropriate? The ICB may feel that responsibility lies with the private contractor to guide it, rather than owning its decisions.

[Stephen Kinnock]

Of course, we want to see consistency and quality right across the board, regardless of who is actually delivering the work. If there are specific issues around private contractors that the hon. Gentleman can flag to me, perhaps he could write to me; we would be very happy to look into them.

We have committed to reduce the running costs of integrated care boards and to redirect that funding to frontline services. To deliver that, our 10-year health plan sets out that integrated care boards must focus on their role as strategic commissioners, ensuring the best possible value in securing local services that improve population health and reduce inequalities. However, NHS England has been clear that, although transformation is required, it must be carried out with clear safeguards in place to protect frontline responsibilities. Legal duties in relation to NHS continuing healthcare must continue to be met. This means that running-cost reductions should aim to make administrative and corporate functions more efficient. They are not there to change funding for direct care or statutory duties.

I acknowledge that integrated care boards have worked intensively to strengthen their plans for 2025-26, focusing on areas where efficiencies and savings can be made. I thank NHS England for working with integrated care boards to monitor spend against these plans. The Department is working closely with NHS England on how responsibilities will be delivered from April 2027 onwards, when—subject to the will of Parliament—NHS England will be abolished. Until those changes are made, the Department and NHS England will continue to carry out their respective statutory functions. In the interim, teams are increasingly working together closely under an interim joint leadership team, including on NHS continuing healthcare.

Fundamentally, addressing some of the issues that hon. Members have discussed today will require wider reform of the social care system. That is why Baroness Casey is chairing an independent commission into adult social care. The commission has a clear mandate to undertake the most comprehensive review of adult social care in a generation. With Baroness Casey as its chair, it will cut through the political stalemate, identify what the country needs and wants from adult social care, and support the Government in establishing a system that works.

Baroness Casey has made it clear that she will not wait until the end of the commission to recommend action where she sees fit to do so. Hon. Members may have seen her speech at the Nuffield Trust summit on 5 March. I thank her for setting out recommendations for immediate action on adult social care, which focused on three key areas: safeguarding, dementia and motor neurone disease. We will not waste time in taking those recommendations forward. We look forward to reviewing Baroness Casey’s phase 1 report, which is due later this year and will set out further recommendations to address immediate priorities for adult social care in this Parliament, laying the groundwork for long-term reform and setting us on the path to delivering a national care service.

In her recent speech, Baroness Casey rightly raised challenges with NHS continuing healthcare. We are carefully considering her reflections. I acknowledge existing tensions between integrated care boards and local authorities regarding NHS continuing healthcare eligibility decisions. Those decisions hinge on whether the support required by an individual is above the limits of what the local authority can provide. Integrated care boards must consult with the relevant local authority before making any decision about an individual’s eligibility for NHS continuing healthcare, putting individuals at the heart of the decision-making process.

However, I acknowledge that, in practice, it is not always straightforward to determine clearly who is responsible for meeting an individual’s needs, so we are working with NHS England to better join up support between the NHS and local authorities, exploring areas where good joint working is helping to improve outcomes for people accessing NHS continuing healthcare. Through the development of our neighbourhood health services, local authorities and integrated care boards are encouraged to consider how services can be reconfigured to focus more on prevention and early intervention, embedding new ways of working to set the direction of travel for future years.

I want all individuals who are eligible for NHS continuing healthcare to receive support in a timely manner, and I want the assessment process to be as smooth, clear and transparent as it possibly can be. We know that eligibility rates can vary from year to year, and across regions and integrated care boards. That variation often exists for good reasons, including differences or changes in the health needs of local populations or individuals over time. To check that the variation is warranted and justified, NHS England continues to monitor eligibility rates by undertaking detailed work to compare eligibility and referral rates between integrated care boards. When it identifies unwarranted variation between integrated care boards with similar demographics, it follows up and seeks to ensure coherence and consistency.

My Department is also engaging with local areas to explore current work on eligibility disputes, and how they address those challenges. There are no quick fixes, but we remain committed to supporting the sector to improve outcomes for individuals. I want to stress that while disputes between organisations are being resolved, individuals must never be left without the appropriate care and support.

There is a robust dispute resolution process in place for when a full assessment for NHS continuing healthcare has been undertaken and the person or people concerned disagree with the outcome. First, an individual or their representative can ask for a local review from the relevant integrated care board. All integrated care boards should have developed a local resolution process that is fair, transparent and includes timescales. Where it has not been possible to resolve the matter locally, an individual may apply to NHS England for an independent review panel to review the decision. Finally, if the original decision is upheld and there is still a challenge, the individual can make a complaint to the Parliamentary and Health Service Ombudsman.

I was very sorry to hear from the hon. Member for Birmingham Perry Barr of the difficulties that his constituents are experiencing, and I thank him for sharing the details of Daniel’s case. I would of course be happy to receive further representations from the hon. Member. Perhaps he could start by setting out in a letter what the issues are, and then we can make sure that appropriate action is taken.

I also know that concerns have been raised about the relatively low number of individuals who are ultimately found eligible for NHS continuing healthcare after they have been referred for full assessment. The threshold for initial referral by GPs, social workers and others is deliberately set low to ensure that anyone who may be eligible is fully assessed. For that reason, many individuals will not go on to receive NHS continuing healthcare. However, an assessment is also a gateway to other forms of NHS-funded support, such as NHS-funded nursing care and joint packages of care between local authorities and integrated care boards. My Department and NHS England continue to work with partners, including the CHC Alliance, Dementia UK, the Nuffield Trust and other sector bodies. We want to support integrated care boards in delivering national policy and guidance, including on how we can achieve better join-up between the NHS and local authorities.

I congratulate the hon. Member for Birmingham Perry Barr again on securing this important debate—and I thank all those who intervened in it—so that we can continue to focus on improving services for the people who need them most. I know that this is a very challenging and emotive topic for many families who are going through extremely difficult times, and I absolutely accept that sometimes controversial decisions are made. We need to ensure that in every one of those controversial cases there is transparency, clarity and coherence. I look forward to working with the hon. Gentleman and with Members across the House to ensure that, collectively, we achieve that goal.

Question put and agreed to.