Children in Hospital for Extended Periods (Report to Parliament) Bill

– in the House of Commons am 2:03 pm ar 19 Ionawr 2024.

Danfonwch hysbysiad imi am ddadleuon fel hyn

Second Reading

Photo of Oliver Heald Oliver Heald Ceidwadwyr, North East Hertfordshire 2:05, 19 Ionawr 2024

I beg to move, That the Bill be now read a Second time.

I started this journey with a ten-minute rule Bill application on 20 June last year. I published the Bill, which is in the same terms now as it was in the last Session, in September, but there were no dates left for a debate, so I am pleased to put it forward again in this Session. I was delighted at that time to have heavyweight support from all parts of the House: my hon. Friend Dr Johnson, who is a consultant paediatrician; senior Labour figures, such as Margaret Beckett, my old friend Clive Efford and the former shadow Leader of the House, Valerie Vaz, as well as many other senior and upcoming colleagues. The Bill would require the Secretary of State to report to Parliament on the merits of providing financial support for parents of children receiving care in hospital for extended periods. The Bill has had considerable media interest and public support, and I thank Ministers for engaging with me on it, particularly the Secretary of State for Work and Pensions and the Minister who is present now— the Minister for Employment, my hon. Friend Jo Churchill, who has personal experience of some of the issues that I am coming to. I have also had engagement with the Department of Health and Social Care, and I welcome the fact that the Minister for Health and Secondary Care, my right hon. Friend Andrew Stephenson, has taken an interest in the matter.

As I explained last June, my constituent Ceri Menai-Davis contacted me after the loss of his six-year-old son Hugh to a rare cancer on 18 September 2021. He and his wife Frances are in the Gallery today. They had a terrible ordeal for more than 10 months, attending hospital and at times commuting daily, as they watched their son rapidly decline over a number of months in hospital from being a sporty youngster, who Mr Menai-Davis was teaching golf, to his sad passing. When Mr Menai-Davis contacted me at the end of 2021, he and his wife had just set up a charity called It’s Never You. Those were the words that Mrs Menai-Davis—Frances—said to her husband when they got the diagnosis. They wanted to help parents of very ill children in hospital with mental and physical support and to call for some financial help, too.

Cases where children are in hospital for extended periods are rare. The reply I received to a written question showed that about 4,000 children a year spend more than two months continuously in hospital. That can involve the parents visiting hospital every day or even staying in a flat provided for parents at the hospital.

Mr Menai-Davis asked if I could arrange for him to meet a Health Minister to lobby for better care of parents. This has never just been about money; it has also been about wanting Government to look holistically into how parents are supported in these difficult periods. I did that, and the then Minister of State, my right hon. Friend Edward Argar, held a meeting with us on 24 March 2022, where he heard about a range of practical problems with care for parents in hospitals. They included issues such as the ability to access food at the weekend, but also mental and emotional support, because what a lot of those parents are going through is the most dreadful ordeal.

The then Minister asked for full details, which we sent to him, with the idea of informing the work on the new generation of children’s hospitals, including on the facilities there for parents of very sick children. He responded constructively on issues of outreach to parents, food for parents staying in hospital with children, improved facilities for families in the new hospitals programme and linking NHS charities with the work of my constituents’ charity, It’s Never You.

Through my constituents’ charity, parents or guardians of sick children benefit by connecting with a community of peers, finding support, including moral support, sharing experiences and getting professionally sourced and reliable information through a social network. There is a blog and an app. That work is done not by the statutory authorities, but through the Children’s Cancer Platform, the UK’s only platform built exclusively to support parents in that difficult situation. The charity has started to put wellbeing bags into hospitals such as Addenbrooke’s in Cambridge, Great Ormond Street and others, and they are well received. It’s Never You is also present in Manchester, Birmingham, Cardiff, Leeds and other places. It has partnered with several charities across the UK and aims to form an umbrella where all relevant charities can be found in one place.

Addenbrooke’s in Cambridge is, of course, the major hospital for East Anglia and is well known to the Minister and me because it is our regional hospital. It is also the site for a proposed new children’s hospital, a project I have strongly supported, in part because the east of England is the only part of the country that does not currently have a children’s hospital. Cambridge children’s hospital will be available to provide care for every child and young person in the region and provide the level of care families need without having to travel hundreds of miles.

The hospital will also be the first in the world to fully integrate mental and physical health provision, so that young people and their families have complete and seamless care according to their needs. That will be underpinned by world-class research in child health and genomics. There will be more provision for intensive care, specialist wards that will provide children in crisis with safe spaces, and dedicated operating theatres that will facilitate thousands of lifesaving procedures. It will be a Cambridge University research facility, and it will integrate cutting-edge treatments and technology bringing physical and mental health together, using genomic medicine not just to treat diseases but to prevent them. It will put the child at the centre of everything and draw on telehealth technology to connect people beyond the walls.

In October, the plans at Addenbrooke’s for this specialist hospital reached a new milestone, as the green light was given to proceed to the final stage of its business case. Dr Rob Heuschkel, the clinical lead for physical health at the hospital, said:

“We know there is widespread support across the East of England for this Hospital—from children and their families to our regional colleagues and our regional MPs. Now is the time for us to all work together to turn our plans into reality. I can’t wait to get started on the next stage of this Project.”

The hospital is provisionally due to open in Cambridge in 2025, and credit must go to the former Secretary of State, my right hon. Friend Matt Hancock, who approved the building of the hospital and committed public funds. Daniel Zeichner, who was in the Chamber earlier, said in a press release that it is the

“next stage in establishing a world-class children’s facility for the region”.

After our meeting with the then Health Minister, my right hon. Friend the Member for Charnwood, the executive director Nick Kirby arranged for Mr Menai-Davis to share his information about what parents need with the team for this new, cutting-edge children’s hospital. They have had productive meetings with him, in which he has shared insights that the team have described to me as “inspiring”. It was confirmed to me recently by Chris McNicholas, the deputy project director, that next steps would include how best to deliver psychological support to parents and to link with the charity’s blog and app.

Before turning to the financial aspects, I would also like to mention the need for improvements in cancer care more generally. While we need exciting new hospitals, primary care needs to come up to standard as well. On 19 November 2021, I spoke in a debate called by my hon. Friend Julie Marson about cancer awareness and diagnosis for young people after the sad death of Jessica Brady, a young satellite engineer, of a rare cancer, and the campaign of her parents, who are my constituents. My hon. Friend, Simon and Andrea Brady and I delivered a petition with 213,000 signatures to Downing Street. Jessica’s cancer had been misdiagnosed on several occasions, and sadly this very clever young woman had died.

Photo of Jo Gideon Jo Gideon Ceidwadwyr, Stoke-on-Trent Central

Does my right hon. and learned Friend agree that the work of parents who are themselves suffering and facing challenges is incredibly powerful? This morning I heard Ceri Menai-Davis speaking on breakfast television, and a question was raised about whether it was right for people with lived experience to be the ones to make the changes in the laws that we make. In my constituency there was the tragedy of a child, Harper-Lee, who died after swallowing a button battery, and her mother Stacy has campaigned for two and a half years for Harper-Lee’s law. I just wanted to give a shout out—along with my right hon. and learned Friend, I hope—to all those fantastic parents without whose work we as parliamentarians would not be able to do our jobs.

Photo of Oliver Heald Oliver Heald Ceidwadwyr, North East Hertfordshire

I entirely agree. Given the tragedy that they had experienced, it would have been possible for Ceri and Frances Menai-Davis to simply collapse, but they did not. They decided that they were going to do something positive, so they set up a charity. The enthusiasm and strength of determination that that couple bring to this situation is something to be seen, and I certainly pay tribute to them.

My right hon. Friend the Member for Charnwood responded to the debate by explaining that we were working on achieving better long-term plans for the early diagnosis of cancer, including rarer cancers, and on trying to prevent what had happened to Jessica from happening again. Hertfordshire’s hospital trusts are working extremely hard on that. The Government’s aim is for three quarters of cancers to be diagnosed at stage 1 or 2, which would enable an additional 55,000 people to survive cancer for five years longer than they do now. As well as new hospitals, we need to see that improvement in diagnosis, which is already taking place in the rapid diagnostic centres and services that the new integrated care boards have been pressing for. There are currently 102 live rapid diagnostic centre pathways. In addition, East and North Hertfordshire NHS Trust, informed by experiences such as Jessica’s but also bearing in mind what has happened in the case of Hugh, is working on a much more co-ordinated multi-disciplinary approach.

What this shows is that we are at the start of a new era, with better hospital services and an understanding of the need to prioritise cancer not just in the elderly but in the young, and in respect of not just the best-known cancers but the rare ones. I pay tribute to the work of the all-party parliamentary group on cancer, which I support.

The aspect of the Bill raised by my constituent is the financial impact on parents of having to spend months in hospitals supporting sick young children. My constituent is self-employed, and it cost him a lot to put his child first, but he was able to manage, not only because of his strong personal finances but because of the support of his family in keeping his business going. However, he feared for others who were less fortunate and found themselves in the same position. He gave me examples of people his charity is helping—people who were losing their livelihoods to support their children in hospital. As I have said, I have raised the financial issue with Ministers in the Department for Work and Pensions and the Department of Health and Social Care, and I have been pointed to some limited help for parents such as leave entitlements, often unpaid, and bereavement leave, as well as universal credit, under which if income goes down the benefit goes up. Parents who have worked for the same employer for at least a year are entitled to 18 weeks of unpaid parental leave, and there may be help from disability and carers’ benefits after a period.

In this Bill, I ask for a report to be made to Parliament by the Secretary of State on the merits of providing financial support to the parents of children receiving care in hospital for extended periods. I am asking for an assessment of current policies and the likely effect of some additional support on both parents and children, and I am asking the Government to consult parents, healthcare professionals, charities and others offering support.

Although It’s Never You is the focus of what Ceri and Frances are doing, I have also heard from other charities, such as Together for Short Lives, which talks about the huge financial strain on families of having a child in hospital, and Young Lives vs Cancer. That charity wanted me to raise one particular issue: the NHS does offer a healthcare travel cost support scheme, but apparently the operation of that scheme is not very helpful. It is ponderous and does not deliver the money quickly enough. Perhaps that is something the report could look into.

I hope it will also be possible for a meeting to take place between the Minister and Mr and Mrs Menai-Davis, so that they can explain what they hope to get from the process. The Bill would not cost a great deal, as there are so few cases, but it would mean that in tragic circumstances all parents could concentrate on helping their children rather than worrying about money. In a way, the Bill is also about Ceri Menai-Davis and his wife Frances being able to help other parents who find themselves in the situation they found themselves in.

The report is likely to touch on some of the other issues that families have taken up with Ministers and that I have raised in my remarks, and I hope it will inform a holistic approach to improving care for young cancer patients and their parents. It would be a legacy for Hugh—we could call it “Hugh’s report”.

Photo of Vicky Foxcroft Vicky Foxcroft Shadow Minister (Work and Pensions) 2:21, 19 Ionawr 2024

I congratulate Sir Oliver Heald on putting forward such articulate arguments. I hope he will not mistake my brevity for not being absolutely serious, but I am certain that he wants to hear from the Minister, as do the families in the Gallery. As such, I will leave my remarks there—I am happy to share the notes that I had prepared if the right hon. and learned Member would like them. Labour will support the Bill.

Photo of Jo Churchill Jo Churchill The Minister of State, Department for Work and Pensions 2:22, 19 Ionawr 2024

I thank Vicky Foxcroft, and thank and congratulate my right hon. and learned Friend Sir Oliver Heald for bringing this important issue to the Floor of the House. I know, as he has explained today and in previous conversations with me, that when Ceri and Frances contacted him after the tragic loss of their son Hugh to a rare cancer at the tender age of six, he was motivated to see how he could help to ensure that parents are supported at such a difficult time. I know that I speak for everyone in this place when I say that our hearts go out to them.

I was moved when I read my right hon. and learned Friend’s speech from last September, and again today. I understood personally the disbelief behind the words of Frances and the name she has given to their charity to help parents of very ill children who are in hospital for extended periods: It’s Never You. The challenge is that sometimes it is. The purpose behind the Bill is to enable research and produce a report on both the emotional and tangible support that is available and that which is needed—like the support that the charity is giving, but looking at things in a more joined-up way to work better and more effectively for parents during such difficult times.

I stand here as somebody who has had cancer more than once. You do not choose it: it chooses you. As Ceri and Frances know, your world is turned upside down. Your days are driven by medical appointments and the need to have questions answered, juggling life’s issues alongside wanting to do anything to try to protect your child and make the pain go away. My right hon. and learned Friend has spoken to me about Ceri and Frances’s motivation to do something for parents who have also travelled the journey of their child having an extended period in hospital, and some of the financial, emotional and physical worries that that brings.

I wish to take a moment to lay out what support is available, but I will do so rapidly because my right hon. and learned Friend went over it. There is help to deal with some of the financial worries. The disabled child addition is available to low-income families on universal credit who are entitled to qualifying disability benefits such as the child disability living allowance. A parent of a child who qualifies for that support can also claim carer’s allowance as a result of their additional responsibilities if they and their partner are providing at least 35 hours of care each week. Additional support is available to families on universal credit who may need further help. For families sadly affected by bereavement, there are funds in England and Scotland to help with funeral expenses.

For people on universal credit, an open discussion with their supporting work coach allows for health and caring responsibilities to be accounted for and enables access to support. I noted that Ceri has worked with Addenbrooke’s Hospital to share his and Frances’s experience to inform the team as they plan the new children’s hospital. I know that the hospital has been keen to ensure that families and patients feed in their experience alongside clinicians. That is a pioneering world-first model of care that looks to treat the whole child—both their physical and emotional needs—as well as providing paediatric genomic medicine.

Behind every young patient, wherever they are treated right across the country, is a family. I recognise how difficult it is to navigate the practical and emotional challenges. That is why It’s Never You and charities like it make a huge difference and play a pivotal role in supporting families, and I thank them all for their work. I reiterate the words of the my hon. Friend Jo Gideon: parents’ voices are so important.

I hope that I have the House’s support, having already spoken to the Minister for Health and Secondary Care, my right hon. Friend Andrew Stephenson to ensure that we can work closely. He has assured me that he stands ready to look at what can be done and to support us in ensuring that the right conversations are held. I know that it is charities such as It’s Never You that most often help parents to access practical support and connect with other families who are going through comparable experiences, gain moral support and love from each other, and share ways to overcome issues and stop the pain of thinking that they are the only ones.

I know that nothing stops the lying awake at night, watching the clock tick through the hours and hoping for miracles, but we want to help families who are going through such difficult times. I commit from the Dispatch Box to working closely with my right hon. and learned Friend the Member for North East Hertfordshire on this important issue. In particular, we are committing to establishing a stakeholder forum to consult parents whose children have received care in hospital for an extended period, and with healthcare professionals, charities, civil society and organisations that offer related support. We want to hear about people’s experiences, understand their concerns and listen to ideas and suggestions, and then develop a set of potential proposals based on the feedback.

I suggest that a meeting with my office be arranged at the earliest opportunity so that Ceri and Frances’s knowledge can help to drive and determine who will be key to that consultation. I will personally ensure that the forum is established in a timely manner and that it progresses quicker than a legislative route would allow. To that end, I suggest to my right hon. and learned Friend that he withdraws the Bill, that we begin discussions now, and, in Ceri’s words, that there is purpose to the pain.

Photo of Oliver Heald Oliver Heald Ceidwadwyr, North East Hertfordshire 2:29, 19 Ionawr 2024

I am delighted by the response, which basically gives me what I asked for in the Bill. Of course, if the Bill went through all stages in this House and the Lords, it would take many months before we could start the process. I think my hon. Friend the Minister said that she hopes to meet the six-month period for the report at the end. On that basis, I am delighted go forward with her proposal, which short-circuits the process. I beg to ask leave to withdraw the motion.

Motion and Bill, by leave, withdrawn.