Infected Blood Inquiry

Ian Byrne Excerpts

Tuesday 19th November 2024 Commons Chamber

[Nick Thomas-Symonds]

I can assure the hon. Lady that the Government will ensure that the authority has the support it needs. I expect it to be making the first payments to infected people by the end of the year, and to start making payments to affected people next year. Further regulations will be required for people who are affected, but that will not disturb the timetable that I have set out. I intend the second set of regulations to be in force by 31 March next year. More than £1 billion has already been paid out in interim compensation, and the Government have opened applications for interim payments of £100,000 to the estates of deceased people who were infected with contaminated blood or blood products and have not yet been recognised.

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

Last week a constituent came to my office whose mother had died 50 years ago, eight months after a blood transfusion she had received when giving birth to her fourth son. When the family went back to collect the medical records, they found that they had all been destroyed. When we talk about a cover-up, they rightly make that link. Is there anything the Government can say to reassure my constituent that her case will be heard?

[Nick Thomas-Symonds]

The Infected Blood Compensation Authority will obviously take—and I know this because of the discussions I have had with Sir Robert Francis—a sympathetic view of the level of evidence that will be required. Sometimes the problem is that the issues complained of date from so long ago, but another chilling aspect of this scandal is, in some cases, the wilful destruction of documents. That is something that we have to take into account when it comes to securing justice for people. I have had the privilege of meeting several members of the community, and I am grateful to them for continuing to campaign on this issue. Let me also openly express my gratitude to Sir Robert Francis and David Foley of the Infected Blood Compensation Authority for continuing to work with the community to drive that delivery of compensation forward.

Ending the defensive culture in the civil service and Government is a cultural change that should unite all of us throughout public life. That is why work is under way across Government to strengthen responsibilities relating to candour and transparency for public servants. In the King’s Speech that opened this Parliament, the Government set out their commitment to legislation to introduce a duty of candour for public authorities and public servants, and the Prime Minister confirmed at the party conference that such legislation would be delivered. He said:

“It’s a law for the sub-postmasters in the Horizon scandal. The victims of infected blood. Windrush. Grenfell Tower. And all the countless injustices over the years, suffered by working people at the hands of those who were supposed to serve them.”

He also said that the Hillsborough law would be introduced to Parliament before the anniversary of that event, on 15 April next year.

Children’s Hospices: Funding

Ian Byrne Excerpts

Wednesday 30th October 2024 Westminster Hall

[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.

--- Later in debate ---

[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.