Children’s Hospices: Funding

Wednesday 30th October 2024 Westminster Hall

09:30

[Ian Byrne (Liverpool West Derby) (Ind)]

I beg to move,

That this House has considered funding for children’s hospices.

It is a pleasure, as always, to serve under your chairship, Mr Twigg.

“To me and my family, Zoe’s Place represents one word… family…They gave my confidence to give my angel 10 years of a fantastic life and provided the most outstanding care when she passed away last year.”

Those are the words of Abbi, mother of Evie-Kate, who relied on Zoe’s Place, a children’s hospice in my constituency. Abbi said:

“Without Zoe’s Place and the support, friends, families and being able to go visit my baby girl’s plaque on her final day…I would be a broken woman.”

Another parent, Jennifer, mother of Theo, said Zoe’s Place means that

“Theo gets the love and care that he has at home, they have been amazing, I can’t put into words how much we will miss the girls…The pure joy in Theo’s face as we pull up and see the Teddy bear. So yes, to us Zoe’s Place is our family…Zoe’s Place has been a massive support and a lifeline, without Zoe’s Place we wouldn’t have got Theo home from Alder Hey after being there for 12 months.”

Those parents are far from alone in finding Zoe’s Place to be an absolute lifeline. If I had more time, I would love to tell hon. Members about countless other families and children supported by Zoe’s Place. But I applied for this debate because earlier this month, we received the shocking news that Zoe’s Place was going to close. Jennifer spoke of her “devastation” on hearing the news, and Abbi said:

“Please don’t take this amazing place away.”

Zoe’s Place opened in my constituency in 1995 and has supported thousands of children and their family members over the years, providing respite and palliative and end of life care for babies and children up to the age of five. It is one of two wonderful children’s hospices that my constituency is home to and which I am so proud of. The other is Claire House, another place of love and warmth, with the most wonderful staff, who do so much good when families are facing such heartbreak. I see that at first hand when I volunteer at that wonderful place, and I find speaking to the families so enlightening. The absolutely life-changing service offered and given by those places is why we could not accept the news, when it was announced three weeks ago, that spiralling costs meant there was not enough money to build a planned new home for Zoe’s Place.

[Matthew Patrick (Wirral West) (Lab)]

I congratulate the hon. Member on securing a debate on such an important issue. He mentions Claire House, which also has a site in my constituency. Claire House is an essential part of our health and social care system, and on my visit there, I could see the clear passion and pride that people have in that service and the important work it does for my constituents. With integrated care board funding for children’s hospices varying so significantly across England, does he agree that more must be done to ensure that every seriously ill child and their family, regardless of where they live, have equitable access to palliative care?

[Ian Byrne]

I thank the hon. Member for that wonderful intervention; I wholeheartedly agree about what Claire House does and with his asks.

Three weeks ago, it was announced that spiralling costs meant that there was not enough money to build a planned new home for Zoe’s Place and that the baby hospice would close for good at the end of the year. It was therefore with real trepidation that we met the trustees on the Thursday after the announcement. We entered Zoe’s Place with the staff—many had been there for decades—feeling devastated after being issued with the consultation period ahead of the planned closure. At the meeting, we were desperate to find a future for Zoe’s Place. The trustees and the staff present outlined what we needed to do: raise £5 million in 30 days and then Zoe’s Place could have a future.

[Kim Johnson (Liverpool Riverside) (Lab)]

I thank my good friend for giving way and I congratulate him on securing this important debate. Will he join me in congratulating the wonderful community of Liverpool on its amazing work to secure nearly £5 million for Zoe’s Place? However, does he agree that instead of relying on charitable trusts to support these important hospices, we need to think about how we put them on a statutory footing to provide better end of life care for everybody?

[Ian Byrne]

I thank my hon. Friend for her excellent intervention; I wholeheartedly agree.

We had to raise £5 million in 30 days to give Zoe’s Place a future, so I asked the trustees to let us give it a shot, harnessing the spirit of the city, which has been galvanised since people heard the news, and the love for this wonderful institution. We put the call out in Liverpool, and I have never seen a response like it in my life. It has been my great city at its very best, for the world to see. We have had kids going door-knocking with fundraising buckets, raising money because one of their friends is being supported by the hospice; parents who turned to Zoe’s Place in times of need organising fundraising walks and sponsored motorbike rides; and support from MPs, such as my right hon. Friend the Member for Hayes and Harlington (John McDonnell) promising to carry on playing his unique take on “You’ll Never Walk Alone” on his trombone if we did not raise the funds—the city has spoken, John, and I’m saying no more. Cafés have pledged their takings to the campaign, running raffles to raise money, and local businesses have got involved, donating tens of thousands of pounds, and their time and expertise, which will never be forgotten.

[Richard Burgon (Leeds East) (Ind)]

Will my hon. Friend accept from me the congratulations of the people of Leeds, who value Martin House Children’s Hospice in Wetherby so highly? Many people in Leeds will look to Liverpool with great admiration at the incredible fundraising efforts, which have impressed and inspired so many. They have also led people to conclude that we cannot allow places such as Zoe’s Place to go to the wall, and that guaranteed full funding for palliative care and children’s hospices is a must.

[Ian Byrne]

I thank my hon. Friend for that excellent intervention, with which I wholeheartedly agree. Former football stars from Liverpool joined the efforts, donating more than £150,000. The local paper, the Liverpool Echo, and its staff led by Liam Thorp, have thrown their weight behind the campaign, doing everything they could to save the hospice. On Monday, we had the incredible news that Liverpool-based company Home Bargains was pledging £2.5 million to the campaign, bringing us within touching distance of the total.

The tireless and wonderful work of so many has been invaluable over the past few weeks. There are so many to thank, if I had the time, but I must pay tribute to the wonderful comic, Adam Rowe and fellow funnyman, Willie Miller, who have done so much to raise this issue both publicly and behind the scenes, and John Gibbons from “The Anfield Wrap” for his tireless efforts over the past few weeks.

There are still 10 days to go, and we are not over the line yet, but we are proving that if any city can do it, Liverpool can. The community, the solidarity, the togetherness—I have never been prouder to be a Scouser. Today, the plans for the future are coming together. Last week, we announced what the new Zoe’s Place Liverpool would be like, operated and run in Liverpool, putting it on a footing to care for kids from across Liverpool and beyond for generations to come. I am really optimistic that we will do it.

But the truth is this: talk to the families who rely on Zoe’s Place and Claire House, see the support that those hospices give to seriously ill children, babies and families, and you will know that that support is not a luxury—it is essential in a modern, functioning society. They provide a vital service that should not require charity to keep it going. Everyone who needs it should have access to high-quality palliative and end of life care, but that is not happening at the moment. Not just Zoe’s Place, but children’s hospices across the country are in crisis, with many more fearing for their future.

That is why today’s debate is important to families up and down Britain. Despite children’s hospices providing an essential service, they are overwhelmingly funded by charity. Less than a third of their income—around 30% —is public money, with the remaining 70% coming from charitable donations. That is a broken model. Let me be clear that I have the utmost respect for people who give up their time and money to support our hospices, but as one constituent said to me recently:

“We shouldn’t have to sell charity cupcakes to make sure kids are cared for”.

But that is what is happening at the moment.

The public funding element of children’s hospices is both inadequate and messy. Most of it comes from the children’s hospice grant. Introduced by the previous Labour Government, it was designed to provide direct funding to children’s hospices. Today, it stands as a £25 million grant, but it has an uncertain future. It was renewed by the previous Government for 2024-25, but the new Government have not yet said whether the funding will continue. According to the charity Together for Short Lives, if the grant is not renewed, there will be a profoundly negative impact on lifeline care and support. Eighty-two per cent of children’s hospices told the charity that they would have to cut or stop providing respite care or short breaks; 70% said they would have to cut or stop providing emotional and psychological support; and 45% said they would have to cut end of life care.

Will the Government commit to maintaining the £25 million children’s hospice grant as a ringfenced fund in 2025-26 and for the long term? Will they commit to making it centrally distributed once again? Many care homes have said to me that they are opposed to the integrated care board model that NHS England is using, as it has led to delays in children’s hospices receiving money.

The next biggest pot of public money for children’s hospices comes from integrated care boards, which have a legal duty to commission palliative care, but the funding is patchy and falling. Research shows that the funding per child with a life-limiting or life-threatening condition varies wildly across the country. It is just £30 per child in Northamptonshire but £397 in Bristol, north Somerset and south Gloucestershire. In my area, Cheshire and Merseyside, it is slightly above average at £206, but there should be no postcode lottery in funding care for kids. And the funding is falling—last financial year, children’s hospices on average received almost 10% less funding than the year before, and almost a third less than the year before that. What are the Government doing to make sure that every seriously ill child and their family, regardless of where they live, have fair and equal access to palliative care?

Local authorities have a duty

“to provide services designed to assist”

family carers of

“disabled children to continue to”

provide care

“or to do so more effectively, by giving them breaks from caring.”

Local authorities, which are under immense pressure, account for just a small fraction of children’s hospice public funding—about 2.5% of the total. The funding fell by 26% from last year to this year, and more than half of children’s hospices received no funding at all from their local authorities. What conversations is the Minister having with colleagues in the Ministry of Housing, Communities and Local Government to ensure that local authorities meet their legal duty to provide short breaks for disabled children who have life-limiting or life-threatening conditions?

The funding streams are insufficient for children’s hospices at the best of times, but we really are at crisis point. That is why we are all here today. With public funding falling, charitable donations squeezed as the cost of living crisis bites—the cost of living crisis, again, is affecting us all— and increased energy prices, children’s hospices have seen their income fall. That is having grave consequences. More than half of children’s hospices in England ended the last financial year with a net deficit, and it gets worse: next year, more than two thirds of children’s hospices forecast a deficit. Unless more public money is found, more and more children’s hospices will have to cut back, more services will be reduced, more kids will miss out, more families will have nowhere to turn and more children’s hospices will be put at risk, just like Zoe’s Place in Liverpool. Extra funding is needed just to stay still, let alone to build the world-class care system that our constituents deserve.

According to research from Together for Short Lives, the NHS needs almost £300 million extra to meet the standards for children’s palliative care set by the National Institute for Health and Care Excellence. That is the inheritance of 14 years of Conservative chaos, with deeply damaging NHS reforms and chronic underfunding of our public services. Our new Labour Government promised change, and that must be delivered. Will they use the opportunity of the NHS 10-year plan to fill the almost £300 million gap in funding for children’s palliative care?

Let me remind everyone that there is money in this country to fund children’s palliative care. Our problem is not a lack of wealth, but its extremely unequal distribution. In the run-up to today’s Budget, I was one of the MPs who called on the Chancellor to raise taxes on the richest, with policies such as a 2% wealth tax on assets over £10 million, which would raise £24 billion a year—enough to meet the palliative care funding gap 80 times over. That is why I introduced a private Member’s Bill yesterday that would launch a review of the funding for children’s hospices and guarantee high-quality care for all seriously ill children and their families. I really hope that the Minister will take up that call.

In Liverpool, the people have risen to the challenge, and we are on the cusp of saving Zoe’s Place. Now this place has to rise to the challenge as well, and we have to give children’s hospices the funding they need to survive. The children and families who rely on these incredible institutions do not have time to waste.

[Derek Twigg (in the Chair)]

I remind Members to bob if they wish to speak—I am pleased to see that they are doing so.

09:45

[Vikki Slade (Mid Dorset and North Poole) (LD)]

It is a pleasure to serve under your chairmanship, Mr Twigg. I thank the hon. Member for Liverpool West Derby (Ian Byrne) for securing this debate. Every time I meet a parent whose family is supported by a children’s hospice, I am immensely moved by their resilience. Gemma, whose three-year-old son Finlay has been cared for by Julia’s House for more than two years, wrote an incredible blog about parental mental health, which can be found on the Julia’s House website. In the debate about money, we should never forget that there are not only children whose lives will be shortened, but parents whose capacity to follow their careers and support their wider family is curtailed and siblings whose childhoods will look very different—so-called glass children, who look strong on the outside but are so fragile they could smash to a thousand pieces.

Children’s hospices and other charities that support young carers and siblings, such as MYTIME Young Carers and Mosaic in Dorset, deserve our unwavering support. They should not have to rely on charity shops and crazy challenges to make ends meet—although this crazy MP has agreed to do a crazy challenge for her children’s hospice next year. My local children’s hospice, Julia’s House, is just half a mile from my home on the border of Broadstone and Corfe Mullen and I have visited numerous times since it opened 20 years ago. It has one of the lowest public funding streams across the hospice sector, with only 8% of its funding coming from the NHS. I had no idea that the support it provides for a child in the last six weeks of life is effectively unfunded. I find it shocking that we expect the NHS to fund the birth of our children, but we are relying on charity to fund care at a child’s death.

When I visited Julia’s House on Monday, I was greeted by a nurse clutching her mobile phone. She showed me the rooms that were prepared for a family who were expected to arrive at any time because their child was approaching the end of their life. The mermaid suite, which was built to support a child’s needs both before and after their death, was ready to welcome them. However, I heard that the nurses would need to be available around the clock and would receive no funding from the NHS, despite the fact that hospice care releases intensive care hospital beds. The cost of end of life care was three times the hospice’s usual per-child funding because of the medication and end of life support. The hospice would have to take that money from the respite, sibling support and regular care programmes to make sure that the family could be given the choice they are entitled to under the NHS gold standard.

Annabelle’s family have been through that already. Annabelle had a genetically inherited condition and was a frequent visitor to Julia’s House, where she enjoyed respite stays, made friends, joined the hospice choir and even got to meet a member of her favourite pop band, the Vamps. She passed away earlier this year at the age of just 18, and her family now face the agonising prospect of losing Robbie to the same condition. He is now receiving care at Julia’s House. But it is not just Robbie; another sibling is also receiving care and support through counselling, and both parents benefit from the respite breaks that will ultimately give them a chance of staying together. I dread to think what will happen to such families if hospice services are cut back.

The hospice grant has not been confirmed beyond 2025. It needs to be guaranteed in the long term and cover every child that meets the threshold, right up to the point of their death. In Dorset, seven months into the financial year, the contracts with local health services have not yet been confirmed by NHS Dorset and NHS Bath and North East Somerset, Swindon and Wiltshire. I ask the Minister to write to the ICBs and insist that they passport 100% of the grant to our precious children’s hospices and commit to a sustainable future for our children’s hospices.

09:49

[Dame Siobhain McDonagh (Mitcham and Morden) (Lab)]

It is a pleasure to serve under your chairship, Mr Twigg. In my constituency, we are amazingly served by Shooting Star CHASE hospice, a children’s hospice that serves 14 London boroughs across south-west and north-west London—quite why that configuration exists, I am unsure—and boroughs and councils within Surrey. I calculate that that is around 1.5 million people. The service provides support to 544 children and their families.

In essence, the funding crisis is due to the unique and specific services that that hospice provides to those children and families. No public body owns it, and those it serves are so dispersed that any integrated care board can simply ignore the tiny number of families in its area. Every social services department in those 14 London boroughs—all of them beset by the huge problems involved in looking after children—will have a tiny number of children and families, who can therefore be ignored. That is why, despite the desire to bring everything down to the most local area or unit, we would like the Minister to hear the strong argument for maintaining the ringfenced grant for children’s hospices. To bring that down to local level would be to give it to services that are already under pressure, where numbers and leverage are equally small.

The breakdown in hospices and children’s hospices always has a cost. If a family cannot get support to look after a child with a life-limiting condition at home, in the end the NHS and social services will step in. I appreciate that it is difficult for Governments of all shades to look at issues in this way, but in the long term and in the round hospices save public money. They prevent family breakdown and ensure high standards of care. Few of us would argue anything but that the best place for a child with a short life is at home, supported by the wonderful professionals we have all met.

I ask the Minister to support the continued central funding of children’s hospices, as well as to look at what can be done for those services with ICBs and social services departments to ensure that they are held to account for their funding and how they allocate it. Given that we have the opportunity of the 10-year plan for the NHS, is it not time to consider palliative care as part of that framework?

Unlike some Members, I think there is a role for volunteers in raising funds, for instance in shops. I have seen the value of that for individuals who contribute, and I am sure that the amazing constituents of my hon. Friend the Member for Liverpool West Derby (Ian Byrne) have all benefited greatly through what they have done to save his children’s hospice. However, hospice funding cannot be jeopardised by being left just to volunteers; the community and its Government, hand in hand, need to look after the most vulnerable children in our country.

[Several hon. Members rose—]

[Derek Twigg (in the Chair)]

Order. If hon. Members can keep speeches to not more than four minutes—that precedent has been set well so far—I will not have to impose a time limit at this stage. Interventions will obviously extend the limit.

09:53

[Bradley Thomas (Bromsgrove) (Con)]

It is a pleasure to serve under your chairmanship, Mr Twigg. I thank the hon. Member for Liverpool West Derby (Ian Byrne) for securing the debate and telling his moving story. I know that all hon. Members will be united in our support for hospices across the country. I rise in particular to speak in support of Acorns, a children’s hospice that serves the wider Worcestershire, as well as the wider west midlands region and is headquartered in my constituency.

Established in 1988, Acorns Children’s Hospice has delivered the essential care that hundreds of local children have needed for the past 36 years. Without it, many families would have been left with nowhere else to turn. When the unimaginable happens and a child receives a devastating diagnosis, Acorns children’s hospice has always been there to help. It provides lifelong supportive care for children with life-limiting and life-threatening conditions across the west midlands and Gloucester from three hospices—in Birmingham, Worcester and Walsall—as well as in the community and in family homes. It helps children and families to fill the time they have together with love, fun and laughter and to create lasting memories, and provides tailored care to meet each child’s individual medical, emotional, cultural, religious and spiritual needs. I put on record my thanks to all the staff and volunteers at Acorns for their compassionate dedication to the care they provide.

More families than ever need our vital children’s hospice care, and that number is expected to continue to grow. However, for the first time in its history, Acorns is facing the prospect of turning away a child in need. The children’s hospice grant has existed since 2007 and aims to provide some of the funding required for children’s hospices across England. In 2019, NHS England increased the children’s hospice grant to £25 million per year for 2023-24 and ringfenced that money specifically for children’s hospices. However, that funding is no longer certain under the current Government. I therefore join Acorns Children’s Hospice in urging the Minister to protect and maintain the children’s hospice grant as a directly distributed ringfenced grant, so that Acorns and every children’s hospice in England can continue to provide the care that children and families desperately need.

To give Acorns and local families the assurances they need, the Government must also guarantee the children’s hospice grant for at least five years and increase it by at least the rate of inflation each year. Guaranteeing this core funding will allow Acorns and hospices across the country to continue to be there for every child and family who need their vital support.

09:56

[Yasmin Qureshi (Bolton South and Walkden) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Twigg. I thank the hon. Member for Liverpool West Derby (Ian Byrne) for securing this debate. I do not have any children’s hospices in my constituency as such, but we do have Bolton Hospice, a brilliantly run organisation that serves adults well. Francis House Children’s Hospice serves the Greater Manchester area and some children from Bolton will have been cared for there.

I will not try to repeat everything that everyone has already said, except to raise a few salient points. When we see a loved one unwell and suffering, it is incredibly painful, but we can all agree that the pain is even more acute when a child or young person is suffering and reaching the end of their life. Let us remember what hospices are there for: for children and young people, and of course adults in the adult hospices, who are dying. That will be their last few weeks and months. Surely, to have a kind, decent society, we should be able to provide them with the best service possible for their last few weeks and months in this world.

There should be, and should always have been, central provision for palliative care across the whole of the United Kingdom. It should never have been left to local authorities, integrated care boards, charities, the voluntary sector and all the different people who contribute. I agree with my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) that there is a role for volunteers, and I pay particular tribute to the people of Liverpool for rallying round and getting money for their hospice, but we should not have to rely on that. We should have £285 million—I believe that is the figure—to provide proper facilities for everyone across the UK so that hospices can plan. With living expenses rising, we know we need experienced and skilled people. If the hospices know they have regular funding coming in, they can plan for things properly, so that it is not a case of, “Gosh, we’ve got a bit of money this month, and we can use it for this facility.” They should be able to plan for the whole year and for years to come.

I congratulate the Minister on his new position. I know will have many such issues to deal with, but I ask him, as colleagues already have, please to think about palliative care in the 10 year NHS review plan and to make it a national plan so that it is given to everyone across the United Kingdom.

10:02

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Member for Liverpool West Derby (Ian Byrne) for setting the scene. It is nice see him in his place; he used to be in opposition, and now he is in government. He has been elevated, so well done.

I was saddened to hear about Zoe’s Place in the hon. Gentleman’s constituency having to become a stand-alone charity to encourage investment. There are many children who rely on these services, so it is never nice to hear the sort of news which he has presented today. Our hospices are pivotal within their local communities, so it is great to be here to discuss how to support them further.

It is also a pleasure to see the Minister and the shadow Minister, the hon. Member for Sleaford and North Hykeham (Dr Johnson), and I look forward to their contributions. About a fortnight ago I attended a pop-up hospice charity shop here in Parliament. It was helpful to discuss the funding crisis facing our hospices with other Members and representatives. I also signed an open letter to the Minister of State for Care, and I look forward to hearing his responses in relation to these issues.

Over the years, I have supported the Northern Ireland Children’s Hospice, which holds three or four charitable events in my constituency of Strangford every year. People are very generous and incredibly kind. The money that John and Anne Calvert help to raise through those charity events is something we all appreciate.

To give some background on the situation in Northern Ireland, the Northern Ireland Children’s Hospice is instrumental in providing endless amounts of support for people and is incredibly helpful. Horizon House in Newtownabbey is a seven-bed in-patient centre that aids the local community, including through sibling and bereavement support. It goes beyond what would normally be expected, providing community care alongside hospice at-home and palliative care for 350 babies across Northern Ireland, which is really important.

In February this year, the hospice had to reduce its bed capacity to six due to a reduction in Government funding, with the intention of running six beds from Monday to Friday, and three beds on Saturday and Sunday—a drastic change from the seven beds, seven nights model. Incredibly active fundraisers added a huge £14 million to the four hospice care facilities back home.

[Mr Gregory Campbell (East Londonderry) (DUP)]

My hon. Friend is making a fundamental point about the community raising millions of pounds to support hospices, particularly palliative care, across society. Does he agree that that has to be seen, not as a replacement for Government funding, but an addition to it?

[Jim Shannon]

I thank my hon. Friend for that intervention. He is absolutely right. The £14 million raised in Northern Ireland for hospice care is extra money and—I say this very gently to the Minister and those in positions of power—that should not be taken by the Government as, “Well, we can take £14 million off what they’re doing in Northern Ireland because we’ve got £14 million from the volunteers.” That £14 million is vital to ensuring that the care goes forward.

With increasing reports of closures and decreases in some services, there is a clear need for the Department of Health, wholly supported by the Barnett consequentials, to find ways to financially aid our hospice services so that, years down the line, we do not see impending closures. The core priority, I believe, is to protect these vital services that provide so much to families across the United Kingdom of Great Britain and Northern Ireland.

Together for Short Lives revealed that the Northern Ireland’s Children’s Hospice has forecast a budget deficit of £1.46 million for 2023-24. That is due in part to a 6% cut in the hospice’s statutory income. Our hearts— and, most importantly, our thanks—are with the staff of hospice centres who work tirelessly to support those young children and families through that end of life palliative care.

I conclude with this, Mr Twigg—I am trying to keep to time—I strongly sympathise with the hon. Member for Liverpool West Derby and his constituents on what they are going through. I have every hope that the Government can do something to support the devolved nations, and indeed NHS England, in the funding crisis. This is the responsibility of the Department of Health back home, but that must be fully supported by Westminster, right here.

10:04

[John McDonnell (Hayes and Harlington) (Ind)]

I congratulate my hon. Friend the Member for Liverpool West Derby (Ian Byrne) not just on securing the debate, but on his work over the past couple of months or so on raising the funds for Zoe’s Place. He rounded up every Scouser he knew, including those of us who live in exile, and asked them to contribute in some way.

My contribution, to which my hon. Friend made reference, was to do a rendition of “You’ll Never Walk Alone” on the trombone—[Interruption.] “Oh dear”, I agree, but let us be charitable about this. The video was used to say, “If you don’t pay the money, we will keep on playing it.” My brother Brian, an ardent Liverpool supporter, contacted me to ask, “Why were you playing ‘Three Blind Mice’?” This man, my hon. Friend, has nearly raised the money, but I want the message to get out there: we are not yet over the line, and we need it for such a valuable resource.

I also congratulate my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) for her work in the all-party group for children who need palliative care. She and Lord Balfe met the Minister, and I believe it was a helpful ministerial meeting. I reiterate the requests that she made of the Minister: the idea of at least extending the £25 million is key, and ensuring that it is ringfenced. It is not that we do not trust the ICBs—eventually they will get into action and will be geared up—but if the money goes directly to them, this will be compete against their other priorities and it is difficult to see how it could be maintained and secure for the future.

Another petition has been raised as well, by Corin Dalby, who wrote to me, calling for £100 million of the money that is raised in fines by the Financial Conduct Authority to be transferred to hospice funding. I think that is worth looking at to fill a short-term gap in the coming period, but the long-term issue is exactly as my hon. Friend the Member for Mitcham and Morden said: we need a comprehensive plan. We accept that that could be a 10-year plan, but people want security over time. I want to see that money integrated into Government funding. Of course, charities raise funds, but additional funds—overall, I think it has to be core funding.

I want to make one final point. I chair a group of unpaid carers, and have done so for the past two years. For someone who is an unpaid carer in this country at the moment, whether they are looking after someone who is sick or a child with a terminal diagnosis, they have almost certainly been thrust to the edge of poverty, because the carer’s allowance is so little. That causes untold worry and stress for those parents, which is unnecessary.

We will see what happens in the Budget today, but I put in a plea and hope that the Government will address the carer’s allowance. It needs a dramatic uplift, which would help to alleviate some of the stress and pressures placed on parents looking after children with a terminal diagnosis.

10:07

[James MacCleary (Lewes) (LD)]

I thank the hon. Member for Liverpool West Derby (Ian Byrne) for securing the debate.

As a parent myself, with two young children, I live in awe of the strength shown by parents of children with life-limiting conditions. It is incumbent on all of us to ensure that funding and support is there, so that those parents can enjoy those precious years that they will have with their children, those moments of joy that sometimes, perhaps, some of us take for granted with our own children. Such families face immense challenges, yet the support they receive varies drastically, depending on where they live. The postcode lottery they face is simply unacceptable.

Sussex, where my constituency is located, with its population of nearly 442,500 children, has an estimated 2,980 children living with life-limiting conditions. That means that approximately 67 out of every 10,000 children in Sussex require specialist palliative care. Those children and families deserve consistent, high-quality care but, sadly, that is not always the reality. A report from the campaign, Together for Short Lives, has revealed that Sussex is failing to meet its required standard for 24/7 end of life care at home. That means that families in Sussex are less likely to have access to around the clock nursing care and specialist advice when their child needs it most. It is hard to imagine the additional stress and heartbreak that that inflicts on families already coping with the unimaginable.

This situation is sadly not unique to Sussex. The report highlights the fact that only a third of local areas in England meet the required standards for 24/7 end of life care. That points to a systemic problem: a lack of funding, workforce shortages and a lack of accountability for delivering equitable care across the UK. I want to see a roadmap for change. Increased funding is essential to close the gap in NHS spending on children’s palliative care. We need more specialised nurses and paediatricians trained in this field. Most importantly, we need to hold our local NHS and local councils accountable for implementing existing policies, as mentioned by other Members, and ensuring that every child in Sussex and in the rest of the country, regardless of their postcode, has access to the care they need.

I hope we will see some good news in the Chancellor’s Budget statement later this morning to close the funding gap for children’s palliative care. This is not just about statistics; it is about real families facing real challenges. We must act now to end this postcode lottery. Children with life-limiting conditions deserve the best palliative care.

10:10

[Wendy Morton (Aldridge-Brownhills) (Con)]

It is a pleasure to serve under your chairmanship, Mr Twigg. I pay tribute to the hon. Member for Liverpool West Derby (Ian Byrne) for introducing the debate. We all agree that children’s hospices do absolutely amazing work, including Acorns in Walsall, which is a lifeline to families in my constituency. Much of its work goes unnoticed by many, but not by those who rely on their services—the children, the families and the siblings. With that in mind, I pay tribute to Councillor Kerry Murphy who, at a recent meeting at Walsall council, gave an incredibly moving and emotional speech, touching on her own personal experience as a carer, a mum and a wife who relied on the services of Acorns hospice. Whether it is accessing short breaks for respite, help for accessing the right services or support for the loss of a child, children’s hospices are a crucial source of support for seriously ill children and their families.

It costs around £11 million every year for Acorns to run its care services, and only a small percentage of that is funded by Government. That money currently comes through NHS England. Children’s hospices, as we have heard this morning, are left increasingly reliant on their charitable income and reserves to provide that vital care and support. Thanks to the commitment, determination and ingenuity of the Acorns team, it has increased its fundraising efforts, with a whole programme of activities, including its shop in Aldridge, but it is not sustainable to expect such reliance to continue.

If the Government fail to maintain the existing £25 million NHS England funding for the children’s hospice sector, families and children will suffer. They will miss out on the extraordinary care and support that they need and rely on. Their child will miss out; their siblings will miss out. I really fear that if this funding issue is not addressed properly, as we have heard this morning, our hospices will face some of the toughest decisions, which none of us would like them to have to face. That cannot be right. We have a responsibility to the sector, which needs clarity and commitment from the Minister, and I hope we will get that today. It needs the certainty of sustainable funding, starting with a return to NHS England distributing the grants centrally in ’25-26. With care costs growing rapidly, the £25 million must be maintained and increased.

I will make a further point on the role of the ICBs. We know that ICB funding for children’s hospices is patchy and variable and nowhere near the level that is really needed. Greater accountability and transparency are required, so I urge the Minister to listen to the hospice sector and recognise that its strong preference is for the funding to go through NHS England. I am conscious of time, but I urge the Minister to listen to us and to maintain, ringfence and centrally distribute the budget beyond ’24-25, with increases at least at the rate of inflation.

10:13

[Tim Farron (Westmorland and Lonsdale) (LD)]

It is a pleasure to serve under your guidance today, Mr Twigg. I pay tribute to the hon. Member for Liverpool West Derby (Ian Byrne) for bringing this important debate to this place at this time and for making astonishingly good use of it. There is no doubt whatever that Zoe’s Place and the fundraising appeal will have been benefited materially from his putting this issue before this place, and therefore before the country and his community. I pay tribute to his community for their generosity.

I speak on behalf of the children’s hospice Jigsaw, which serves Cumbria, north Lancashire and the south-west of Scotland, and of Derian House in Chorley, which also serves some of my constituents. The scale of the heartbreaking reality of young people living with life-limiting conditions is mind-blowing. Nobody could fail to be moved by that reality and the impact on the families. It is worth also bearing in mind the immense compassion and professionalism demonstrated at Jigsaw and, indeed, all our hospices. It is true that there is a value in the hospice movement having independence and charitable status. It values that but there is a limit, and what we are looking at today is hospices, particularly children’s hospices, being stretched beyond the limit of their ability to raise the funds that they need to take care of the very poorly children whom they lovingly and so professionally do take care of.

The scale of the issue is worth bearing in mind. For the ICB that covers the southern part of my constituency, Lancashire and South Cumbria, there are currently nearly 3,500 people aged 0 to 24 years with life-limiting or life-threatening conditions. For the ICB for north Cumbria, which includes the whole north-east of England as well, the figure is more than 6,000. The money spent per head is £18.86 per child. If we think about the whole hospice movement serving Cumbria—St Mary’s at Ulverston, St John’s at Lancaster, Derian House, Eden Valley Hospice and Jigsaw—we are talking about the taxpayer, the NHS, being saved £33 million every single year because of the support that those hospices give in providing palliative and end of life care for people of all ages.

There is a particular thing that I want to raise about Jigsaw and the threat that it faces. It is a relatively small children’s hospice serving a very large rural county. The hon. Member for Strangford (Jim Shannon) talked about the importance of hospice at home, for example. The support that Jigsaw gives families outside the hospice is also massively important. But in recent years, of course, inflation has had an impact on fundraising. Look at energy bills: there has been an increase of something like 30% in overheads for most children’s hospices, including Jigsaw. Also, of course, hospices need and want to compete with the NHS on the pay that they give their excellent staff, but they are not funded. When the NHS has a pay rise, each part of the NHS, generally speaking, gets the funding to cover it, but not children’s hospices, so we are calling for ringfencing and central distribution of the money to hospices and for increases if at all possible.

I want to say a particular word about the complexity of our communities. I do not want to overly criticise our ICBs, but we have a children’s hospice that serves two, and as a result, getting the money out of them can be very difficult. It should not be for children’s hospices to work so tirelessly to drag money out of the public sector and to raise so much from voluntary services when what they are trying to do is to provide compassionate, professional, end of life care for children. It is time today for the Chancellor to step up and fund our hospices, including Jigsaw, in a way that is permanent, reliable and sufficient.

10:18

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

It is a pleasure to serve under your chairmanship, Mr Twigg. I thank the hon. Member for Liverpool West Derby (Ian Byrne) for securing this important debate. In preparing for it, I learned that more than half of children’s hospices around the UK reported a deficit in 2023-24. As a result of a lack of long-term and sustainable statutory funding, coupled with the increasing costs incurred when providing lifeline care to seriously ill children and their families, more than half of children’s hospices in England ended the year in deficit. Looking ahead to 2024 and ’25, the picture gets even worse, with nearly three quarters of children’s hospices forecasting a net deficit and with the total shortfall across 35 organisations estimated to reach £25 million.

In Kirklees, where my constituency sits, Forget Me Not Children’s Hospice is an essential part of our local health and care system. It offers vital palliative care and support to seriously ill children and their families. Despite that, however, the hospice is facing a turning point: crucial services, including respite and end of life care, will be cut if the Government fail to maintain the existing £25 million NHS grant funding for children hospices. For Forget Me Not, the impact of losing that grant would be catastrophic and result in a significant reduction in services in our area. That comes on top of already fragile sustainability as a result of historic underfunding, making it one of the least funded hospices in the UK.

Amid a year of high inflation and the growing costs of recruiting and retaining skilled and experienced staff, children’s hospices’ costs are rising. UK Government Ministers must act urgently to ensure that seriously ill children and their families can access the crucial hospice and palliative care services they need. I stand here and join other hon. Members in asking the Minister to maintain the £25 million as ringfenced, centrally distributed NHS funding for children’ hospices beyond 2025, and to ensure that that funding increases by at least the rate of inflation. I also ask the Minister to use the new 10-year plan for England to review the way in which children’s palliative care is planned and funded, and to ensure that those vital and critical services are funded in full and not left to rely on community fundraising.

10:21

[Zöe Franklin (Guildford) (LD)]

It is a pleasure to serve under your chairmanship, Mr Twigg. I start by thanking the hon. Member for Liverpool West Derby (Ian Byrne) for organising this very important debate on the funding of children’s hospices. I have had the sobering privilege of visiting Christopher’s children’s hospice, which is run by Shooting Star Children’s Hospice Association of the South East, just beyond the border of my constituency of Guildford, on two occasions in the past year. Each of those visits has left me with a lasting impression, as I witnessed the incredible work that the dedicated staff team do to support not only the children with life-threatening conditions in my constituency, and well beyond, but their families.

My reason for speaking today, just as so many others have done, is to highlight how challenging the financial situation that hospices are experiencing has become. We have heard that only a third of the funding required by hospices comes from the NHS and central Government, and the rest is sourced from charitable donations. We are really fortunate to live in a society where fundraising for children’s hospitals can keep them funded, but is that really how we should be providing the majority of the funding for crucial services for children with life-limiting and life-threatening conditions? The £25 million allocated by NHS England is intended to support children’s hospices, but the distribution through ICBs has led to significant delays in accessing that funding for the upcoming 2024-25 financial year, and there is a really troubling uncertainty whether it will continue into 2025-26 and beyond. That only exacerbates the already daunting task of financial planning for hospices.

Given those circumstances, it is perhaps not surprising that, in a recent survey of children’s hospices, Together for Short Lives found that hospices would prefer NHS England funding to be distributed centrally, according to an overwhelming 83% of respondents. That would provide the certainty and stability that is crucial to them. I am sure that everyone here can agree that children’s hospices play a vital role in our communities, and I want to put on the record today a really big, heartfelt thanks for the care that hospices and their honestly incredible staff provide to children and their families. I particularly thank Christopher’s in Shalford for the care it provides for my own local residents, as well as those across Surrey and beyond. Those families and their children are going through some of the toughest challenges imaginable. However, our gratitude is not enough. I really urge the Minister today to commit to a fair, long-term deal on funding for children’s hospices and to ensure that the NHS funding returns to being a centrally managed grant.

10:24

[Mr Joshua Reynolds (Maidenhead) (LD)]

It is a pleasure to serve under your chairmanship, Mr Twigg.

I thank the hon. Member for Liverpool West Derby (Ian Byrne) for securing this important debate. Children’s hospices provide an essential service, offering specialised care for children with life-limiting and life-threatening conditions. However, they are not just a place of medical care; they are sanctuaries of love, comfort and dignity, ensuring that every child can experience joy and the best possible quality of life.

Nevertheless, like many institutions in the UK, children’s hospices have been struggling over the past few years. In 2023-24, they spent 15% more than they did in 2021-22 while receiving 31% less funding from ICBs and 11% less from local authorities. Compounding that situation is the fact that since 2019-20 there has been a 41% increase in the number of children receiving end of life care in hospices.

Alexander Devine Children’s Hospice Service in Maidenhead is a shining example of children’s hospices. In November 2001, Alexander Devine was diagnosed with a brain tumour at the age of four. At that point, his whole family became consumed by hospital appointments, doctors, nurses, operations, treatments and scans. Sadly, four and a half years later, Alexander died, aged eight. The Devine family knew clearly at that point that Berkshire needed its own children’s hospice and the Alexander Devine hospice has become a lifeline for countless families across Berkshire, bringing together the community and the community’s compassion.

The impact that Alexander Devine Children’s Hospice Service has on the community is profound. In the last year, it has provided over 18,000 hours of care and support for families, which is not just a statistic for those families; it means countless moments of relief and joy, and the creation of precious memories for families, all of whom have challenging lives. However, that is set against the backdrop that 83% of the hospice’s funding comes from donations, fundraising and gifts in wills. The reliance on charitable contributions underscores the precarious nature of funding in this sector.

We understand that children’s hospices are not luxuries but necessities, filling a critical gap in our healthcare system. However, if they are to do that, we need to fund them properly. I will not repeat the calls on the Minister that every other speaker has made today, but it is clear that we need to see forward movement. I am really hopeful that our wishes this morning will be reflected in the Budget later.

I close by reflecting on the words of Fiona and John Devine:

“The word ‘hospice’ is not a word that many relate to with happy thoughts; I much prefer the Latin ‘a resting place on life’s journey’. I know from my experience that you cannot go into a children’s hospice and not be filled instantly with love, laughter, happiness and tears.”

[Derek Twigg (in the Chair)]

I thank Members for their co-operation in terms of the time they are taking for their speeches. I say to the Front-Bench speakers that I am keen that the hon. Member for Liverpool West Derby (Ian Byrne) should get a chance at the end of the debate to wind up for a minute or so.

10:27

[Alison Bennett (Mid Sussex) (LD)]

It is a pleasure to serve under your chairmanship, Mr Twigg.

I begin by thanking the hon. Member for Liverpool West Derby (Ian Byrne) for securing this really important and timely debate. I also pay credit to his efforts and the efforts of the good people of Liverpool for all the work they have done to save—hopefully—Zoe’s Place. However, the fact that all those efforts, including the trombone-playing, have been required means that today we are not where we should be. Based on the contributions across the Chamber this morning, there is widespread agreement among Members that this total dependence of children’s hospices on fundraising—putting out the begging bowl to keep them going—is unacceptable and something that we would like to see change.

In Mid Sussex, where I live, I know somebody called Carey who I first met in 2019. I went to his house for a cup of tea and he pointed to a photograph on the wall and said, “Just so you know, this is my son Fred, and Fred died when he was a teenager.” Roll on to 2024, and Carey and I are no longer fellow constituents—he now lives just outside Mid Sussex—but we are both served by the wonderful Chestnut Tree House Children’s Hospice in Arundel, which serves families right across west Sussex.

Chestnut Tree House did an incredible job for Carey, Fred and the whole of their family as Fred approached the end of his life. Carey said he is certain of the fact that

“without the support of Chestnut Tree House for our lovely Fred, and for us as we helped him, on his journey from lively teenager to death, we would all have been broken beyond endurance”.

What Chestnut Tree House did for Carey was to make his and his family’s most difficult years as bearable and as happy as they could be. Every child whose years are shortened and every family involved deserves such support. I fear that unless the Government take decisive action, such vital support services will continue to wither, and children like Fred and family members like Carey will be left to fend for themselves in truly dark times.

This is not an issue to be addressed at a later date, but one that has consequences for children and families throughout the country today. The challenges faced by children’s hospices are daunting. Each year hospices across the UK provide vital services to around 300,000 people, including approximately 7,500 children with life-limiting or life-threatening conditions. That is why we Liberal Democrats firmly believe in the necessity of a fair funding deal for hospices. It is time to address the inconsistencies that Members have spoken about in children’s palliative care funding, and ensure that all hospices are properly resourced to meet even the most basic NHS standards.

Charities such as Together for Short Lives have identified systemic problems that stop children getting the care they need. With the large majority of funding being private or charitable, the sector is precariously poised. Although the increase in the children and young people’s hospice grant to £25 million is a positive step, I am sad to say that it falls woefully short of the £295 million gap in NHS spending on children’s palliative care identified by charities such as Together for Short Lives.

A staggering two thirds of local areas in England fail to meet the required standard for 24/7 end of life care for children at home. Alarmingly, only 14% of integrated care boards—just six in total—currently fund services that provide round-the-clock access to children’s nursing care and specialist paediatric palliative care consultations.

The postcode lottery is very real. In 2022, NHS funding for children’s hospices varied dramatically. Areas such as Norfolk and Waveney allocated £511 per patient; others, such as South Yorkshire, provided a mere £28. This disparity is totally unfair. It leads to unequal access to essential services, including therapies like physiotherapy, which can make a genuinely life-changing difference for so many children. These are not just statistics: they translate into real-life consequences for families who need and deserve every bit of support they can get.

Meanwhile, rising costs have not been matched by appropriate funding increases, and the lack of transparency in funding and services is concerning. Freedom of information requests revealed that only 31% of integrated care boards could confirm how many children with life-limiting conditions accessed hospice care in their area, while 14% could not even report on their spending in this critical area. This is unacceptable. We must have a clear understanding of the needs in our communities to ensure that no child is left behind. We cannot allow our most vulnerable children and their families to be at the mercy of a fragmented and inadequate system.

We have a moral obligation to act. Together we can create a future in which every child, regardless of their circumstances, or where they live, receives the best possible palliative care. That can happen when, first, the Government fix the postcode lottery; secondly, they review the declining charitable incomes of hospices and the links to deteriorating services; thirdly, they review commissioning for palliative care, which too frequently leaves hospices out of pocket for providing basic services and which leads to significant disparities within and between communities; and finally, they introduce a specific national hospice workforce plan to cut vacancy rates with the utmost urgency.

It is vital that the Government commit to action to ensure that every child whose years are shortened, and every family involved, can make the most of every moment they have left together, just as Fred, Carey and the rest of the family were able to do.

10:34

[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?

10:41

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairmanship, Mr Twigg. I thank my hon. Friend the Member for Liverpool West Derby (Ian Byrne) for securing this vital debate. I know that this sector—this community—is very close to his heart. I thank him for all his work to support it and raise awareness of the issue generally, and in particular for the heroic work he has been doing for Zoe’s Place. I know Zoe’s Place faces an uncertain future, but I also know that my hon. Friend is spearheading its fundraising campaign and has been part of the discussions with its trustees and builders about securing a new site for the hospice to ensure it has a long-term future. I am very much aware of the work that the Liverpool-based Home Bargains is doing, particularly in pledging an incredible £2.5 million towards the campaign. I wish my hon. Friend and the hospice every success in those vital endeavours, and I pay tribute to Home Bargains for its outstanding community spirit.

I thank the many hon. Members who have attended this important debate and contributed so powerfully to it. We have heard some really excellent contributions. Hon. Members have shown how important this issue is to the House. I thank all the people who work in children’s palliative and end of life care, including in hospices throughout the country, which provide vital care and support to those who need it.

We all recognise the importance of palliative and end of life care services, including hospices, which provide personalised care and support at the most difficult times for children and young people with complex needs, and their families and carers. It is estimated that there are more than 86,000 children and young people with life-limiting conditions in the UK, but it is predicted that, as we continue to make medical advances, that number will increase.

Palliative and end of life care for children with life-limiting conditions is provided by a broad range of organisations and professionals across multiple settings, including primary care, community care, hospitals, hospices, educational settings and children’s own homes. This system-wide approach to providing palliative and end of life care should be sufficient to ensure that the local offer to patients is personalised, of high quality and sustainable. The majority of palliative and end of life care is provided by NHS staff and services, but we recognise the essential part that voluntary sector organisations, including hospices, play in providing support to people at the end of life and their loved ones.

Children’s hospices are a vital part of that system-wide approach, because they provide a wide range of health and care support to meet the physical, emotional, social and, indeed, spiritual needs of children, young people and their loved ones. Care is often provided by a multi-disciplinary team, and often in collaboration with statutory services, to ensure that the entire family is supported.

The support provided by hospices can include practical advice and information; short breaks or respite; specialist therapies such as physiotherapy, art therapy or play therapy; 24/7 end of life care; and bereavement support. Short breaks are a key part of a range of provisions that support disabled children and their families. They can include the provision of day, overnight and weekend activities for children and young people, and can take place in the child or young person’s own home, the home of an approved carer, or a residential or community setting.

Local authorities have a statutory duty to assess the social care needs of disabled children and young people, and to provide respite care where necessary. Where it is appropriate, local authorities can fund respite care provided by hospices, either as a short-term stay or as a service that the hospice team provide to the child or young person in the family home. Local authorities and ICBs regularly liaise to plan and commission the most appropriate package of respite care for children and young people with life-limiting or life-threatening conditions in their area.

The Government do not monitor the use of social care for children with palliative and end of life care needs, but local authorities are required to publish a local short breaks duty statement, which shows what services are available, how they respond to the needs of local carers and how they can be accessed, including any eligibility criteria. Local authorities must consider the needs of local parents and carers when preparing their statements, and they must review them regularly.

Palliative care services are included in the list of services that an integrated care board must commission. That promotes a more consistent national approach and supports commissioners to prioritise palliative and end of life care locally. To support ICBs in that duty, NHS England has published statutory guidance and service specifications, which include specific reference to ensuring that there is sufficient provision of specialist palliative care services and hospice beds, as well as future financial sustainability.

Most hospices are independent charitable organisations that receive some statutory funding from the NHS.

[Wendy Morton]

If funding for children’s hospices is to go through ICBs—I hope the Minister will take account of the sector’s view—what assurance can he give us that it will actually go to the children’s hospices? I fear that if we are not careful, we will pit one healthcare sector or charitable sector against another, and that would not be in anybody’s interest.

[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.

10:55

[Ian Byrne]

It has been a privilege to listen to hon. Members and sense the unanimous feeling that where we are now is not sustainable or acceptable. We do not want to see more cases like Zoe’s Place to happen in constituencies across the country. Once again, I thank the House and all hon. Members here for what they did, and the Minister and the shadow Minister, the hon. Member for Sleaford and North Hykeham (Dr Johnson), for their responses. I hope that we can find the solution moving forward; I will certainly be having conversations with the Chancellor about it.

Question put and agreed to.

Resolved,

That this House has considered funding for children’s hospices.