Ben Coleman

I am very grateful to my hon. Friend the Member for York Central (Rachael Maskell) for calling this vital debate. As the right hon. Member for New Forest East (Sir Julian Lewis) did, I will talk about children, and I would like to start with Amy. Amy had Cockayne syndrome, which is a severe, fatal, multi-organ genetic disease. She lived with it for 28 years, and for much of that time her family felt utterly lost. They were navigating a health system that simply did not know how to help them. What changed everything for her was a specialist NHS clinical service, where she got a co-ordinated team who understood her condition. They knew her, and they became a genuine lifeline. I met Amy’s wonderful mother, Jayne, and sister Louise on Monday at a rare disease day at St Thomas’ hospital, just across the river. I must thank Dr Shehla Mohammed and the Rare Disease UK team, including Dr Bob Sarkany, for a truly inspiring visit. Jayne told me when I met her that, if this specialist service had existed for Amy when she was diagnosed at the age of 14, so much would have been different and so much would have been easier. Amy’s condition was rare, but her experience was not. Right now, there are 99,000 children in this country—babies, toddlers, teenagers—who are living with life-limiting or life-threatening conditions. Their families are navigating the same fear, the same confusion and the same desperate need for someone to show up and know what to do, but too often what they need just is not there. We have recently been talking in this House about the Government’s very welcome new special educational needs and disabilities strategy, which promises to end the battles that disabled children and their parents face to get the support they need. That is exactly right, but it must apply equally to palliative care. What does that support look like? This was mentioned by the right hon. Member for New Forest East. Children’s palliative care is not just about death or bereavement; it runs from diagnosis to the end of life. Sometimes, it runs from birth to early adulthood and beyond, and, yes, to bereavement. However, it is not about giving up. It is about making sure that, however long a child has, and it may be many years, they can live their life and their families can live their lives as well as possible. The rare diseases centre at St Thomas’ hospital showed me what is possible when we get this right. It calls its multidisciplinary clinic a carousel, which is a nice word. It means that patients see every specialist they need in one appointment, rather than having to travel across the country trailing from hospital to hospital over months. That is great when it exists, but the problem is that, as has been said, children’s palliative care is planned, funded and provided inconsistently across the country. That was confirmed by a report of the independent expert panel’s “Evaluation of Palliative care in England”, published last November. It was commissioned by the Health and Social Care Committee, of which I have the honour to be a member, along with my hon. Friend the Member for Birmingham Erdington (Paulette Hamilton). The report cites Together for Short Lives, which is the leading charity supporting seriously ill children and their families. It told the panel that more than a quarter of families today feel poorly supported, and that nearly one in 10 families feel altogether unsupported. In addition, only a third of existing paediatric palliative care teams are properly staffed, despite the National Institute for Health and Care Excellence guidance on staffing. The Government response to the report is encouraging. It commits to the modern service framework for palliative care and acknowledges that they must improve services for children. It will come as no surprise to the Minister that I and the Select Committee will be holding the Government to that, as we will integrated care boards across the country. Within services for children who need palliative care, children’s hospices stand out as a beacon of what can be achieved. They are absolutely irreplaceable. They provide specialist nursing, symptom management, short breaks for exhausted families, and emotional and bereavement support. I hugely welcome the £80 million that the Government have given to children’s hospices over the next three years, so that they can plan ahead more easily, but hospices are scattered geographically. Most families access palliative care through the NHS, which is not providing this care consistently. What needs to improve? I suggest that five things need to improve so that people get what they need, where they need it. First, we need 24/7 care. At the moment, families are alone at 2 in the morning and they do not know who to call. There have been pilots where hospices and NHS services work together to provide round-the-clock care at home, so it can be done. The NHS needs to adopt that model. Secondly, we have workforce issues. There are shortages of specialist nurses in paediatric palliative care and of properly trained generalists. That is a systemic problem, so I look forward to the NHS workforce plan, which I hope will specifically address children’s palliative care. Thirdly, we need to consider neonatal palliative care. Neonatal deaths account for 41% of all childhood deaths. Just before Christmas, I had the unforgettable experience of visiting the neonatal unit at Chelsea and Westminster hospital in my constituency. Since 2015, it has run a most extraordinary national neonatal palliative care programme. It is on track to have trained every neonatal network in the UK from Chelsea and Westminster hospital by 2029. There has been a remarkable partnership at the unit between the NHS, the True Colours Trust and CW+, which is the hospital’s charity. I want the NHS to keep going with that. Fourthly, we have patient groups. Their work, together with the NHS, can be life-saving. They need to be recognised and funded. Finally, as NHS England is abolished, we need to protect the roughly 80 highly specialised services on which the rarest and most complex cases depend. When NHS England goes, we need a national commissioner with the authority to fund these services nationally and to step in when local pressures threaten them. I have set out a number of good examples, and there is real proof of what can work when the system wraps around families. Amy did not get that from the start. Jayne told me how different things could have been if she had. In future, I hope that we can make sure that every Amy—every one of those 99,000 children—gets the palliative care that they need.