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.
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?
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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
10:00 am
20 of 51 shown
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.
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.
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.
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.
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.