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.

Hospice Funding

Ian Byrne Excerpts

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.

Oral Answers to Questions

Ian Byrne Excerpts

Tuesday 23rd January 2024 Commons Chamber

[The Parliamentary Under-Secretary of State for Health and Social Care (Dame Andrea Leadsom)]

My hon. Friend is a great advocate for her community, and I pay tribute to her for working with determination to see more access to dentistry in Cornwall. She is right to do so. We have a plan, which is almost ready. I urge her to wait just a little longer. She, like all colleagues across the House, will see significant and real measures to improve access to dentistry.

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

T2. NHS staff have expressed concerns about the Anaesthesia Associates and Physician Associates Order 2024. Can the Minister tell me if resource will be needed for AAs and PAs to be properly supervised by doctors on a one to one ratio? Will he meet trade unions and professional bodies as a matter of urgency to clarify the Government’s position on this hugely important public health issue?

[The Minister for Health and Secondary Care (Andrew Stephenson)]

PAs and AAs are an essential part of the reform piece to the long-term workforce plan. I note that the order was passed by the House last night without a Division, so I am grateful for that cross-party support. We are working with the General Medical Council, the British Medical Association and others to ensure that the regulations are fit for the purpose. We look forward to the GMC launching its consultation on the fine print of the regulations very soon.

Oral Answers to Questions

Ian Byrne Excerpts

Tuesday 11th July 2023 Commons Chamber

[Neil O’Brien]

Absolutely. We are conscious of the additional needs of people who have equipment like that. By the end of June, the Government had covered nearly half of a typical household’s energy bill through the support schemes we put in place, but we are always looking at what more we can do to help vulnerable households.

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

11. What assessment his Department has made of the potential impact of primary care service closures on public health.

[The Parliamentary Under-Secretary of State for Health and Social Care (Neil O’Brien)]

Each integrated care board is required to ensure access to GP services for all. Overall, more people are being seen in general practice than ever before—about 10% more than before the pandemic—but where some practices close, the local ICB has to ensure that patients are transferred smoothly to other practices.

[Ian Byrne]

Park View medical centre in West Derby, one of the most deprived areas of my city, is facing imminent closure, and there has been a lack of transparency and accountability throughout the process when dealing with the ICB to get the decision reversed. In the Minister’s reply to my letter, he said it was essential that, if a GP surgery closes, it does not lead to a reduction in the quality of care for patients in the locality. Park View patients have been clear that dispersal to other surgeries would be catastrophic, especially when all GPs are already facing huge pressures. Will the Minister urgently intervene to halt the closure due to the legal insufficiency of the consultation process and meet me and patients?

[Neil O’Brien]

I have looked carefully at that case, on which the hon. Gentleman has been campaigning. The incumbent provider chose not to bid for the future contract for Park View medical centre, and NHS Cheshire and Merseyside decided that the best thing was to help patients to transfer to neighbouring practices. Patients will only be transferred to practices rated as good, and there are 10 other practices rated as good within a 1-mile radius of Park View. Since 2019, there has been an increase in the number of patient-facing staff of about 50% in the constituency. That means there are more people in his GP surgeries. We are working hard to ensure high-quality GP services in his constituency.

Healthy Start Scheme

Ian Byrne Excerpts

Wednesday 7th September 2022 Westminster Hall

[Kate Green (Stretford and Urmston) (Lab)]

I beg to move,

That this House has considered access to the Healthy Start scheme.

It is a pleasure to introduce the debate and to see you in the Chair, Ms Rees. I start by praising Healthy Start. The scheme provides support to expectant mothers who are more than 10 weeks pregnant, and to parents and care-givers who are responsible for at least one child under the age of four. Healthy Start vouchers, which have a value of up to £4.25 a week, or £8.50 a week for those with a child under one, entitle parents in receipt of certain social security benefits to fruit and vegetables, cows’ milk, infant formula and pulses. The vouchers also enable mothers to access vitamins from pregnancy until their child reaches the age of one, and enable children to access them from birth until the age of four. Originally, the scheme used paper vouchers, but since September 2021, families who were already enrolled on the Healthy Start scheme have been moved on to prepaid cards. Since the end of March 2022, prepaid cards have entirely replaced the paper vouchers.

Healthy Start has an important role to play in helping to ensure that mothers and young children have a nutritious diet. It is effective: research has found that participating families increase their spend on fruit and vegetables. The Minister will understand how crucial a healthy diet is for pregnant and new mothers, babies and young children. The British Medical Association has highlighted the effects of poor nutrition during pregnancy: adverse health and social outcomes, premature birth, low birth weight, shorter life expectancy and a higher risk of death in the first year of a child’s life.

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

I thank my hon. Friend for securing this incredibly important debate; I know the work that she has done on the issue. A report from Feeding Liverpool, published today, has found that thousands in our city who are eligible for Healthy Start are missing out. In 2021, an estimated £758,521 went unclaimed, rather than on giving children and those who are pregnant in Liverpool access to good food, milk and vitamins. That is a huge loss for families who are struggling to cover the rising cost of living in a city where one in three is now food insecure. It will have a huge health impact; we know how important nutrition is for children in the early years. Does my hon. Friend agree that the Government must urgently review and extend the eligibility threshold for Healthy Start, to enable more families to benefit from the scheme, and that the Government must invest in a national Healthy Start communications campaign to increase awareness and uptake?

[Kate Green]

It is a pleasure to respond to my hon. Friend’s question. He has done excellent work as part of his “Right to Food” campaign, and he raises a number of issues, including take-up, the generosity of the scheme and the importance of adequate nutrition, that I will come back to in my speech.

My hon. Friend will know that child food poverty continues to stunt children’s development as they grow up, and that overstretched family budgets, which mean that mothers go without in order to feed their children, are harmful to maternal health, increase maternal stress and are especially dangerous if women are breastfeeding—or, indeed, may prevent them from doing so. The Minister will share our concern that a new YouGov survey commissioned by Kellogg’s, which will be released next week—I appreciate that she has not had a chance to see it yet—has found that 66% of low-income families say that accessing Government benefits is complicated, and 53% are not confident that they are aware of all the benefits available to them. At the same time, 80% of parents on low incomes say that the rising cost of goods has impacted their ability to pay for essential items, and more than one in seven says that their children are worried about the situation.

Oral Answers to Questions

Ian Byrne Excerpts

Tuesday 19th July 2022 Commons Chamber

[Maria Caulfield]

I outlined in my answer to the hon. Member for East Renfrewshire (Kirsten Oswald) that around half a billion-worth of pounds of procurement in Scotland did not go through the usual channels. All offers that were identified, regardless of route, underwent rigorous financial, commercial, legal and policy assessment, led by officials, and the final decision on whether to enter a contract sat with the appropriate accounting officer at the Department.

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

T1. If he will make a statement on his departmental responsibilities.

[The Secretary of State for Health and Social Care (Steve Barclay)]

I am honoured to have taken on the role of Secretary of State for Health and Social Care, and to have responsibility for incredibly important services that touch all our lives. I pay tribute to my predecessor, my right hon. Friend the Member for Bromsgrove (Sajid Javid), for everything he achieved in this role, and for the dedication he showed. I also welcome my new ministerial team.

Since my appointment, I have been relentlessly focused on the urgent pressures facing health and care, including this week’s extreme weather. Yesterday I updated the House on the strong support we are giving, including extra ambulance capacity and more call handlers, and we will stay vigilant so that we can make sure our health and care system is there for those who need it.

Today marks one year since we lifted covid restrictions. While the virus has not gone away, we are able to enjoy our freedoms, thanks to the incredible vaccine roll-out. I have accepted the Joint Committee on Vaccination and Immunisation’s advice for a covid and flu autumn and winter booster campaign, in which we will roll out that vaccine further.

[Ian Byrne]

I have been contacted by many constituents working in the NHS who are struggling to cope with financial pressures, exhaustion and stress. I recently spoke to a district nurse using our food pantry in West Derby, and it was a heartbreaking example of how the cost of living crisis is impacting people across our communities. That nurse was going to lose their home and was struggling to feed their children. How does the Secretary of State plan to address the dire situation that the very people he applauded as heroes during the pandemic now face? Maybe a start would be giving NHS workers an inflation-proof rise.

[Steve Barclay]

On NHS pay, I expect to announce a response to the integrated pay review bodies shortly. We are putting more funding into the NHS, as I signalled in my statement yesterday.

Future of the NHS

Ian Byrne Excerpts

Monday 31st January 2022 Westminster Hall

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

It is a pleasure to serve under your chairmanship, Mr Gray. The privatisation of the NHS has been a lengthy and well-documented process that started during Thatcher’s Conservative Government in the 1980s. It has shifted the responsibility for the long-term care of the elderly and the vulnerable from the NHS to local authorities, and allowed hotel-type charges for long-term care. This violated a key NHS principle that patients should not pay health charges. Charges became means tested, and homes had to be sold to pay for the bills. Local authorities were forced to pass on their responsibility for healthcare to outsourced private companies. That created a for-profit industry worth £6 billion a year.

Ninety per cent. of nursing home beds are now operated on a for-profit basis. Almost 400,000 elderly patients are now a source of income in an increasingly privatised sector. The staff in those nursing homes are an increasingly casualised and deskilled workforce. The privatisation of care for the elderly created such a mess that we are still trying to sort it out 40 years later. That is the shameful legacy of privatisation in one sector of healthcare. We can see clearly that the process of privatising the NHS itself will follow the same pattern. It will be run by private contractors who will de-professionalise and casualise a temporary workforce.

There has been a creeping privatisation of the NHS. In 2012, an Act was passed that, among other things, required all NHS contracts to be tendered to any qualified provider. Now we have ambulance services run by taxi firms, private companies that have taken over GP practices covering half a million patients in London, and a private company taking over an NHS hospital and cancelling the contract when there was no more money to be made. I have seen first hand, working for Unite and organising outsourced workers in the health sector, the damage that privatisation does to our essential care services.

If that tale of incompetence was not enough, the Government are now pushing through a new reorganisation, this time to establish what they call “integrated care”. It does the complete opposite, instead butchering our NHS into 42 separate areas. It should not be called integrated care but “disintegrated care”. Each area has a fixed budget that cannot be overspent. This will create a postcode lottery and force each area not to co-operate with each other to save cash. Each area board will allow private healthcare companies—another play on words: they are mostly private health insurance companies—to make decisions about the provision of healthcare.

Here we go again: the Government’s answer to underfunding our NHS is to let private companies run it. History has taught us that this is not the solution. NHS staff employed by 42 different organisations face a most uncertain future of casualisation, deskilling and the introduction of poorer terms and conditions. The people of England face a regional, not a national, health system, which will have different terms and conditions for its workforce and different provision of treatment. It is chaotic and irresponsible.

Every Government of the day have been entrusted to preserve and protect one of the country’s greatest achievements—to cherish, not cherry-pick and hive off to the private sector. I urge the Minister to listen to the calls of my constituents, campaigners and the trade unions and scrap the catastrophic Health and Care Bill, which destabilises, fractures and imperils our NHS.

[Andy McDonald]

rose—

Medical Cannabis under Prescription: Children with Epilepsy

Ian Byrne Excerpts

Wednesday 3rd November 2021 Westminster Hall

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

It is an honour to serve under your chairship, Ms Bardell. I thank the hon. Member for South Leicestershire (Alberto Costa) for securing this incredibly important debate and for his extremely powerful contribution. I am also grateful for the other contributions that we have heard, especially that of my great friend, the hon. Member for Middlesbrough (Andy McDonald).

I pay tribute to those of my Liverpool, West Derby constituents who are living through the devastating consequences caused by the lack of access to medicinal cannabis. I pay tribute to the families, their friends and all those in our community who have campaigned relentless for those people. They should not have to fight that hard and they should not have to endure so much. It was a real privilege to meet some of the campaigners at the End Our Pain event. One of my constituents wanted to be there, but it is extremely difficult for her to be away from her child at the moment—their time together is so precious.

I was proud to sign End Our Pain’s letter to the Prime Minister and Secretary of State yesterday, which asked for immediate action to find a way to help the families with children with severe epilepsy, who continue to be denied NHS access to medical cannabis, as we have heard so powerfully so far. I know that the Minister was listening intently, and I can see the empathy in her eyes. I urge her, on behalf of my constituents, to take immediate steps and do whatever it takes to help these families. I ask that the Minister intervene to help adults who require access to medical cannabis under NHS prescriptions. I spoke to some families yesterday. There are siblings going through the same unimaginable pain. I am happy to discuss this at any time with the Minister.

The law was changed on 1 November 2018 to allow access to medical cannabis under prescription. This brought hope to many families. In my first meeting after becoming an MP in 2019, I spoke to families and they had an air of optimism. They thought there was change coming, but the reality three years on, as so eloquently put by the hon. Member for South Leicestershire, is that only three NHS prescriptions have been written for whole-extract cannabis oil. Families are having to raise £2,000 a month to buy this medicine privately.

We need to remember that we are in the middle of a pandemic, so funds that those families had raised previously had gone. The people I spoke to yesterday were talking about mortgaging or selling their house, doing whatever they can to raise the money. Tragically and heartbreakingly, there are families who believe that this medicine will help their child, but they will not put the child on it because of the limitations to starting the process and having to take the child off, as well as the financial issues. I cannot imagine what is going through their minds.

My constituent Lauren wrote to me last night. Although I cannot do full justice to everything she put in the email, I would like to impress on the Minister just some of what she is going through and what she is asking from the Government. She says:

“My time together with my son is precious, and I shouldn’t have to keep fighting. I want to make memories for whatever time we have left. In March NICE reiterated their guidelines about prescribing medical cannabis and these guidelines are certainly not being enacted. The Health Secretary must help now before it’s too late. Allow GPs to prescribe, and if that can’t be done instantly, then establish an emergency fund for the children already benefiting from private prescriptions.”

Lauren is a truly awe-inspiring mum and campaigner, like many I met yesterday. Her asks are simple and need to be listened to. Families are being pushed from pillar to post, and this injustice cannot continue. The interests of patients should be put first, and the system must start delivering the enormous benefits that this medicine can offer.

Reducing Baby Loss

Ian Byrne Excerpts

Tuesday 20th July 2021 Westminster Hall

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

It is an honour to serve under your chairship, Mr Gray. I pay tribute to the hon. Member for Truro and Falmouth (Cherilyn Mackrory) for securing this important debate, for her incredibly moving contribution and for her work on baby loss. I also pay tribute to my constituents in Liverpool, West Derby who have been in touch to ask me to speak today and raise their concerns, and to all those affected by the devastating loss of a baby. Nothing I can say here can do justice to the heartbreak they have been through, but I hope to do my best to raise some of the issues that constituents have shared with me.

It is truly heartbreaking that every day about 14 babies in the UK die before, during or soon after birth. The recent report by the Health and Social Care Committee notes the good progress made, but stresses the urgency with which actions must be taken to achieve the Government’s ambitions of reducing baby loss by 2025. The expert panel also raised serious concerns about aspects of continuity of carer, personalised care and safe staffing, and the Committee has made a series of recommendations, including for a Government commitment to funding the maternity workforce at the level required to deliver safe care to all mothers and their babies.

The report also states that the improvements in rates of stillbirth and neonatal deaths are good but are not shared equally among all women and babies. Babies from minority ethnic or socioeconomically deprived backgrounds continue to be significantly at greater risk, and as the charity Sands says in its report:

“Babies should not be at a higher risk of death simply because of their parents’ postcode, ethnicity or income.”

I wish to raise a case on behalf of one of my constituents today and to pay tribute to her. Can the Minister provide an update on the progress made since the important debate on covid-19 and baby loss in November and outline the steps the Department is taking on research and actions to make sure that nobody has to go through what my constituent has experienced?

My constituent is a health worker who became poorly last year with covid, 36 weeks into her pregnancy. At 37 weeks, she attended hospital with reduced foetal movement, and her daughter was monitored for five hours. When she got to the delivery suite, her daughter had died.

The hospital completed an investigation and found that there were many lessons to be learned. Policies and procedures were not correctly followed. My constituent should have been reviewed by a senior consultant and was not. There were delays of hours in transferring her to the delivery suite due to low staffing levels. The cardiotocography traces showed that her daughter was in distress, but unfortunately at the time that was not acted upon or escalated. If it was, she would have been taken for a caesarean section earlier in the day.

I close with the words of my constituent:

“I have spoken to other women who have been in the same position as me with covid at the same time but their hospitals have acted fast and thankfully their babies have survived. I have also spoken to women in other areas who have sadly lost their babies because their hospitals did not act appropriately. A gold standard of care should be followed nationally. It should not be a postcode lottery if your baby lives or dies.”

Motor Neurone Disease (Research)

Ian Byrne Excerpts

Monday 12th July 2021 Westminster Hall

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

It is an honour to serve under your chairship, Ms Cummins. I thank the hon. Member for Linlithgow and East Falkirk (Martyn Day) for introducing this important petition to the House.

I thank the 110,700 people, including 225 of my constituents, who signed the petition and campaigned for an increase in much-needed funding for urgent research into motor neurone disease. I pay tribute to constituents in West Derby who have been diagnosed with motor neurone disease and to their families and friends.

The petition has one clear ask: new Government investment of £50 million over five years to kickstart the pioneering MND research institute. That call is based on the assessments made by the Motor Neurone Disease Association, MND Scotland and My Name’5 Doddie Foundation. The Government, in their response to the petition, claim that they have spent £54 million on MND research over the past five years, but analysis by the MND Association shows that the figure includes general neurological research, often with no tangible link to MND. I therefore urge the Minister to come back with the package of targeted support that is needed.

Today, I will speak about a friend and constituent, Mark Maddox, his fight against motor neurone disease and how his work exposed me to the heart-breaking impact that it can have. I will do everything I can to assist in this campaign moving forward.

I first met Mark a decade ago, when I helped to coach his youngest son’s football team—he will laugh, watching this, at the word “coach”. Mark was diagnosed with motor neurone disease in 2010. It was my first experience of the disease, with the impact that it had on him, his family and friends. Mark is an absolute legend of the local football scene both in Liverpool and at Altrincham football club, where between 1996 and 2006 he made 349 appearance as a tough-tackling captain and centre-half. The bravery with which he has tackled the disease was hewn from that background.

After being diagnosed with motor neurone disease, Mark ran three marathons, skydived, did bike rides, released an album and, in 2011, fronted a nationwide campaign through every football league in the country, reaching more than 2 million people through match-day programmes. He also appeared on Manchester United TV—despite being a huge Liverpool fan—BBC North West and various radio stations, as well as LFCTV making a mini documentary about Mark. That was all done to raise awareness and funds for the campaign to fight this cruel disease.

Mark was told at diagnosis that he would be lucky to live beyond a year—that was 11 years ago. Mark believes that the love and support he receives from his family—his wife in particular—his friends and often complete strangers have helped him to get through to this day. Over the past decade, however, Mark has become increasingly frustrated with the Government’s lack of understanding of people with motor neurone disease and their families and of its devastating effects. He wants change.

To finish, I urge the Minister to listen to Mark and the many other people who have been diagnosed with motor neurone disease and to say, “No more!” Motor neurone disease stopped Mark achieving great things in football and, with world-leading UK scientists on the cusp of major breakthroughs in MND research, we need a commitment from the Government: for a vital increase in the funding that will accelerate the discovery of treatments; and to pledge the funding needed to kickstart a pioneering motor neurone disease research institute. Together, we can work to end motor neurone disease so that people diagnosed, like Mark and countless others, can fulfil their potential.