Children’s Hospices: Funding

Debate between Ian Byrne and Richard Burgon

Wednesday 30th October 2024 Westminster Hall

[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.

Hospice Funding

Debate between Ian Byrne and Richard Burgon

Monday 22nd April 2024 Commons Chamber

[Richard Burgon (Leeds East) (Lab)]

I congratulate the hon. Members for Hastings and Rye (Sally-Ann Hart), and for Darlington (Peter Gibson), on securing this important debate, with cross-party support. The debate is a time for us to thank all the people who work in hospices in our local communities.

Hospices have touched so many lives in all our constituencies. St Gemma’s hospice in Leeds serves my community and has a special place in my heart because my grandma, mum and auntie all received care there before passing away, and the staff did a fantastic job. It was 20 years ago last month that my mum passed away there. Looking at the St Gemma’s hospice Twitter feed this evening, I saw that a friend of mine, Liam Raftery, who was a fantastic musician in a Leeds band called The Latchicoes, passed away there at the age of just 30 in 2017. I did not realise that it would have been his 37th birthday yesterday until I saw the St Gemma’s hospice Twitter feed.

The work that hospices do touches all our lives, and they do a fantastic job under incredibly difficult circumstances. St Gemma’s cares for over 300 people every day, and around 2,000 patients each year, but as we have heard from various speakers tonight, funding is a huge issue. St Gemma’s funding from the NHS covers less than 30% of the total hospice needs, so we need core funding on a sustainable basis. St Gemma’s hospice is budgeting for a deficit of over £500,000 in this financial year, which is why it has had a fundraising drive online over the last 48 hours. If people donated to St Gemma’s hospice before 8 pm tonight, their donation would be matched—in other words, it would be doubled.

I was delighted to see that, due to the generosity of people in Leeds, the hospice more than exceeded its target of raising £200,000 in just 48 hours. That shows how valued the hospice is in our community, as well as the generosity of local people. When I last went to St Gemma’s hospice and met the chief executive Kerry Jackson and her team, one of the things they made clear, and are still making clear, was that fundraising drives in general are becoming harder and harder to do. That is because of the cost of living crisis. People want to give but they cannot necessarily give as much as they used to. The people who run and work at St Gemma’s hospice are clear that NHS funding is not sufficient. They say that it covers less than 30% of the total hospice needs, so we need to see a change.

People have mentioned the independence of hospices, and that is important. We cannot have a situation where the people working in and running hospices in some of the most stressful circumstances imaginable, at a crucial and painful time for those who are losing loved ones, are worrying not only about how to care for people in the last moments of their life but about funding.

[Ian Byrne (Liverpool, West Derby) (Lab)]

Would my hon. Friend agree that the Government should provide an increased level of funding that is long-term sustainable to all children’s hospices, including Claire House and Zoe’s Place in Liverpool, West Derby, which provide magnificent and crucial support for everybody in West Derby and beyond who needs it?

[Richard Burgon]

I thank my hon. Friend for that intervention. He has spoken to me before about the hospices in Liverpool and how they serve the people of West Derby, and he is correct to say that sustainable, reliable and sufficient funding is needed—especially as we are seeing increased demand—if the hospices that Members on both sides of the Chamber have celebrated tonight are to continue to provide the service that is needed by the people in our communities.

I want to end by saying thank you to each and every person who works at St Gemma’s hospice in Leeds, to the team who work there day in, day out, and also to the people in Leeds for their generosity. Even in tough times, they are donating and raising money for St Gemma’s hospice. Long may it continue the fantastic work that it does, but we need to ensure that sufficient core funding is provided so that it can do that work more easily in the decades to come.