Children’s Hospices: Funding

Caroline Johnson Excerpts

Wednesday 30th October 2024 Westminster Hall

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

It is a pleasure to serve under your chairmanship, Mr Twigg. I congratulate the hon. Member for Liverpool West Derby (Ian Byrne) on securing this important debate and on his work to raise funds for this important cause. I will look on YouTube later to see whether I can find the right hon. Member for Hayes and Harlington (John McDonnell) playing the trombone; I am sure it will be a great rendition.

Losing a child is every parent’s very worst nightmare, but every day parents throughout the country are caring for children with life-limiting diseases. There are now 99,000 seriously ill children and their families in the UK. For those families the children’s hospices are, as we have heard today, a necessary lifeline. As an NHS consultant paediatrician, children’s palliative care is an issue close to my heart and I have cared for many children with life-limiting illnesses. I have also been the person who has delivered that bad news and been there through families’ journeys, and also in those final moments.

My role as a politician now gives me the opportunity to stand here and advocate for those families and those children, and to use this platform as a vehicle for positive change to make the treatment and care for those children much better. It is an opportunity I have taken before. I was pleased to hear my hon. Friend the Member for Bromsgrove (Bradley Thomas) and my right hon. Friend the Member for Aldridge-Brownhills (Wendy Morton) talk about Acorns hospice. In 2019, the hon. Member for Newcastle upon Tyne North (Catherine McKinnell) and I co-chaired the all-party parliamentary group for children who need palliative care, and heard of the financial difficulties faced by Acorns and other hospices. Our campaign, and an Adjournment debate held in July 2019, led to an announcement from the Minister at the time, my hon. Friend the Member for Gosport (Dame Caroline Dinenage), that the hospice grant would be doubled from £12 million to £25 million. That certainly helped the hospices then, but time has moved on.

Demand is increasing; there are more children affected, sadly; those children are living longer, which means they need the services for longer; and the complexity of the care they require has increased. In fact, on average, children’s hospices in England spent 15% more in 2023-24 compared with 2021-22. Charities have raised money to fill the gap, but we have heard that they find it more difficult to raise funds in some areas than others, depending on the relative affluence of the people who live in the area surrounding the hospice. That relates not to their generosity but simply to their means to provide extra funding. It is important that we ensure that all children have access to such services, regardless of where they live.

Progress was made in the previous Parliament on improving access to palliative care for children. As part of the Health and Care Act 2022, the Government added palliative care services to those that must be commissioned by the ICB. As part of that, £1.5 billion of extra funding was provided at national level to support ICBs with inflationary pressures, and a further £25 million was allocated in grant funding for the 2024-25 period. However, it is important to say that we still have increasing demand and we still need more funding. We also need certainty, as hospices cannot plan from year to year. They need the Government to give them the sort of certainty of financial support that they were given previously.

I am concerned about the Budget this afternoon, because we have been briefed that national insurance contributions for employers will rise. We have also been briefed that NHS direct employers will be protected, but that will not necessarily protect hospices and others who deliver healthcare services. We will look carefully at that this afternoon.

As I said, the ICBs are now responsible for allocating funding for children’s hospices, but Together for Short Lives has highlighted the variation in how they have allocated that grant. Some have paid the allocation in full, some are paying it quarterly and others have not paid at all. What steps will the Minister take to hold the ICBs to account for allocating the grant and supporting hospices?

I recognise that there is great value in the ICBs providing local services, locally commissioned, to best target local services at the population they serve, but there is also a recognition that some services are low volume but high complexity and best commissioned nationally. I urge the Minister to consider carefully whether the balance is right for children’s hospices, which are certainly relatively low-volume, high-complexity services, and whether they should be nationally commissioned. In either case, it is wrong that ICBs do not have access to the statistics showing the number of children they have to care for, because without them they cannot plan their funding. I ask the Minister to do what he can to ensure that he has the right information to make the right decision.

Many children with life-limiting conditions have cancer. The children and young people cancer taskforce was set up earlier this year to drive improvements in how we detect, treat and care for children with cancer. What is the Government’s alternative to the cancer taskforce, which has been paused, and how quickly can we expect it to be put in place?

I appreciate that it is difficult for the Minister to make commitments, given that the Budget is just a few hours away, but will he commit to reviewing the locations of children’s hospices? A report produced by the APPG for children who need palliative care—including the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh)—in conjunction with Together for Short Lives demonstrated that because children’s hospices are often set up charitably, their locations are not always spread evenly across the country, so particularly in rural areas people find it difficult to access one. Given that all children must have access to hospices, will the Minister commit to at least looking at how to ensure that access?

Will the Minister restate the Government’s commitment to the provision of short breaks? Children’s hospices provide excellent palliative care at the end of life, but they also provide significant care during life. Part of that is short break respite care, which is so valuable to many families. Will the Minister commit his Department to ensuring that is funded?

--- Later in debate ---

[Stephen Kinnock]

The right hon. Lady is absolutely right: funding that is earmarked for palliative care must go to palliative care. There is statutory guidance from the NHS, and it is vital that we continue to liaise with ICBs from the centre, to ensure that the allocated funding goes where it needs to go. If she is aware of cases in which that funding is not going where it should go, she should make representations; I am happy to receive a letter from her on the issue.

The amount of funding that each charitable hospice receives varies both within and between ICB areas. That funding will vary depending on demand in an ICB area, but will also depend on the totality and type of palliative and end of life care provision from both NHS and non-NHS services, including charitable hospices, in each ICB area. There are inequalities in access to hospice services, especially for those living in rural or socio- economically deprived areas. That is why including hospices as part of a system-wide approach is so important.

I understand that charitable hospices value their independence and autonomy, which allow them the freedom to provide services beyond the statutory offer, which is one of the wonderful parts of hospice care. That independence also gives a sense of shared purpose, in which the community cares for the hospice, and in turn the hospice cares for the community and is something to be cherished. That is indicative of the compassion that is found in hospices and communities all over the country.

In addition to ICB funding, at a national level, NHS England has supported palliative and end of life care for children and young people through the children and young people’s hospice grant, totalling £25 million in ’23-24. While ’23-24 marked the final year of the grant in its previous format, in ’24-25 NHS England continued to provide £25 million of funding for children and young people’s hospices. A prevalence-based model is used for that funding, which supports the move away from a traditional model of bed-based funding, better reflecting population needs. In ’24-25, that funding was transacted by ICBs on behalf of NHS England for the first time, rather than being centrally administered. I am aware that the shift to an ICB-transacted model for ’24-25 has not been as smooth a transition as we in the Department certainly would have hoped. We are working closely with NHS England to resolve any remaining issues with the ’24-25 funding, and to learn from what did not work so well this year.

We, alongside NHS England, absolutely recognise the importance of sustainable funding for the palliative and end of life care sector, including hospices, and we will consider the future of children’s hospice funding in the context of Budget discussions. I have absolutely heard the representations by hon. Members on both sides of the Chamber today about the need for the Government to maintain the £25-million grant, and I assure hon. Members that I am working very closely with NHS England to get that confirmed as a matter of urgency.

[Dr Johnson]

The Minister talked about maintaining the grant, but does he recognise that many hon. Members have also raised the increasing costs that hospices are facing? Will he look to not just maintain the grant but increase it?

[Stephen Kinnock]

We are certainly looking at all those issues in the round, including ensuring that the grant is sustainable and that there is a real-terms financial input to the system. We are working on that as a matter of urgency. I totally recognise and understand why the sector needs certainty and stability; it is very difficult for hospices not to be sure what is happening after this in-year position.

The 2010s were a lost decade for our health and care services, which now too often are not there when we need them. That is also true for hospice care, where we see a postcode lottery for services across the country and variation in quality and access. Hon. Members will know that we have committed to developing a 10-year plan to deliver an NHS and care system that is fit for the future, by driving three shifts in the way that care and health services are delivered.

We will be carefully considering policies, including those that impact children with palliative and end of life care needs, with input from the public, patients, health staff and our stakeholders as we develop the plan over the coming months. That engagement process was formally launched last week, and I strongly encourage the sector, including hospice providers, service providers and their families, and indeed every parliamentarian in this Chamber, to engage with that process: please go on to change.nhs.uk and make your voice heard. That will allow us to fully understand what is not working as well as it should, what the solutions are, and where the opportunities are for the future.

One of the three strategic shifts that our 10-year health plan will deliver is the Government’s determination to shift more healthcare out of hospitals and into the community. Community health teams play a vital role in supporting children and young people with complex health and care needs to live as well as possible, providing proactive care and preventing exacerbations and hospital admissions where possible. That shift from hospital to community includes our commitment to roll out neighbourhood health services to ensure that patients and their families receive personalised care in the most appropriate setting in their community, and indeed as close as possible to home. Palliative and end of life care services, including hospices, will have a major role to play in the fundamental shift from hospital to community, and in shaping that shift.

Additionally, the Department, through the National Institute for Health and Care Research, is investing £3 million in a new policy research unit in palliative and end of life care. That unit launched in January 2024 and will build the evidence base on all-age palliative and end of life care, with a specific focus on inequalities. In closing, I thank once again the hon. Member for Liverpool West Derby for securing this vital debate on children’s hospice funding. I again express my heartfelt thanks to all those who support children, young people and their loved ones when they need them most.