Palliative Care

Ben Coleman Excerpts

Thursday 5th March 2026 Commons Chamber

[Ben Coleman (Chelsea and Fulham) (Lab)]

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.

--- Later in debate ---

[The Minister for Secondary Care (Karin Smyth)]

I thank my hon. Friend the Member for York Central (Rachael Maskell) for securing this important debate. We entered Parliament at the same time; we were immediately on opposite sides of the assisted dying debate, and we remain so. Although the Government are neutral, we have always articulated our concern around palliative and end-of-life care in many debates in this House. My hon. Friend has done a marvellous job of that today by bringing forward this debate.

I also thank all my hon. Friend’s colleagues on the commission on palliative and end-of-life care for the vital work they do as they continue to develop their third report. We are really grateful to all those who work or volunteer in the palliative care and end-of-life sector for the care and support that they provide to patients, families and loved ones at a time when they need it the most. As my hon. Friend the Member for Cannock Chase (Josh Newbury) said, everyone deserves a good death.

I commend the shadow Secretary of State for his contribution regarding his excellent experience in the sector; he made some really valuable comments. I have talked about this before, but I too come to this debate with experience. In 2008, I worked with clinicians around end of life and how to live and die with chronic obstructive pulmonary disease—a really unpleasant disease, if there is such a thing as a pleasant disease. I was made aware that people were talking about how to live with it, but no one was really responsible for working with patients and families on how to die with COPD.

I learned a lot about how we talk about death and dying in the health service and the care service, as well as the great work that our trainers and people do to support our clinicians about how best to die. That was really valuable for me when my own father died at home in 2010, supported by Macmillan and a fantastic community care team, which happened partly due to the training that I had and how I was able to articulate on behalf of my family. Things should not have to be like they are. That was 16 years ago, and it is really concerning that across the country people are still experiencing such poor care.

I see lots of that good care in my own local hospital, St Peter’s, which is doing some of the innovation that the shadow Secretary of State mentioned.

I want to reassure colleagues that the Government and my hon. Friend the Minister for Care, who leads on this work, are absolutely committed to creating a society in which everyone receives high-quality, compassionate care from diagnosis through to the end of life.

We have heard a lot about the role of hospices today, from my hon. Friends the Members for York Central, for St Helens South and Whiston (Ms Rimmer), for Birmingham Erdington (Paulette Hamilton), for Beckenham and Penge (Liam Conlon), for Cannock Chase, for West Dunbartonshire (Douglas McAllister) and for Bury St Edmunds and Stowmarket (Peter Prinsley), and from shadow Health Secretary, the right hon. Member for Daventry (Stuart Andrew). Although we recognise that the majority of palliative and end-of-life care is provided by NHS staff and services, we absolutely recognise that many hospitals do fantastic work in this area, and they face a challenging financial situation due to a range of pressures.

That is why last year we announced that we would support the sector with a record £125 million capital funding boost for those hospitals in England, to help them to provide the best physical environment for the people they care for. That money can be spent on fixing a roof, paying for double glazing or buying a new boiler. Although I take the shadow Secretary of State’s point that sometimes people are more willing to contribute to those sorts of things, I know too that finding the money to fund such repairs is what keeps those running the system awake at night, and this work also saves money in the long run, particularly on energy bills. The full £125 million has now been allocated to 158 eligible hospices by Hospice UK. My hon. Friend the Minister for Care has been touring the country to visit many of those hospices to see at first hand some of the good that the money is doing.

On top of that, we are providing around £80 million in revenue funding for children and young people’s hospitals over the next three years, as been said, giving them the stability they need to plan ahead—that was welcomed by the right hon. Member for New Forest East (Sir Julian Lewis). To reassure him, we absolutely recognise the different needs of children and their families in this work. A long-term commitment was a key demand from the sector, which faces a cliff edge in funding cycles every year. Children and young people’s hospices and integrated care boards have been informed of their allocations for the next financial year, and we intend to let hospices know about funding for future years once the process is complete.

We absolutely recognise that this money will not be a silver bullet, and many hospices still face pressing challenges. The need for palliative care and end-of-life care is also projected to rise in coming years with our ageing population, as we have heard. However, although around 75% to 90% of those at end of life would benefit from palliative care and end-of-life care support, only about 55% are identified as such in primary care. That is why NHS England recently wrote to all ICBs requesting an immediate update on the financial stability of hospices in their footprint and the steps needed to mitigate those risks. That will give us a clear national picture of any hospitals at risk of closure or significant service reductions and the potential impact on patients’ families and the wider urgent care system.

With regard to the wider system, neighbourhood health services and their development sit at the heart of our 10-year plan. We are building a service that will deliver more personalised care closer to where people live, empower people to lead healthier, independent lives where they can, and give them a genuine choice about how to access support. I want to reassure hon. Members that the NHS medium-term planning guidance identifies those at the end of life as a high-priority cohort in the implementation of neighbourhood health. I also say to my hon. Friend the Member for Newcastle upon Tyne East and Wallsend (Mary Glindon) that the workforce plan, when it comes forward, will reflect the move into neighbourhood services.

We have to move away from disjointed pathways, as my hon. Friend the Member for Worcester (Tom Collins) articulated so well in speaking about his terrible experience with his mother, and ensure a paradigm shift that looks at people holistically throughout the pathway, as my hon. Friend the Member for Bury St Edmunds and Stowmarket said.

I am the Minister responsible for reforms to the system architecture, and we are asking ICBs to do more. NHS England’s strategic commissioning framework makes it clear that we expect them to commission services in line with the current and future needs of the people they serve. We are moving away from ringfenced incentive budgets, and streamlining the incentives to focus more on the outcomes that we should all expect from our systems. Via the model ICB blueprint, we have made it clear that it is the mission of ICBs to reduce inequalities through a careful assessment of the quality, performance and productivity of existing provision. As we heard in today’s debate, we have to ensure that there are high standards and focused objectives. Next month, ICBs and NHS providers will create a new plan to more effectively manage the needs of high-priority people. NHS England is supporting commissioners to understand those needs, with a dashboard that brings together all relevant local data in one place.

There is currently a contracting mix in the sector, as we have heard today. When we support ICBs to commission more strategically, we have to start moving away from the grant and block contract models. That is why the Government are developing a landmark palliative care and end-of-life modern service framework, or MSF, for England. Palliative and end-of-life care has been variable across the country for far too long, but the modern service framework will put a floor under the kind of care that patients can expect, as we heard from my hon. Friend the Member for City of Durham (Mary Kelly Foy). Although it would not be right to pre-empt exactly what will be in the final MSF at this time, we are working closely with all stakeholders to ensure that everyone has access to the care they need in the right place and at the right time. As part of the MSF, we have invited colleagues from a number of organisations to engage with us.

[Ben Coleman]

Can the Minister confirm that the MSF will include targeted support for children who require palliative care?

[Karin Smyth]

My hon. Friend pre-empts my next paragraph; I thank him for his contribution.

As part of the development of the MSF, we will be looking at some of the important aspects of care that my hon. Friend the Member for York Central mentioned, such as early identification of need, care delivered closer to home by integrated generalist and specialist teams, and strengthened out-of-hours community health support, including a dedicated phone line. I assure the right hon. Member for New Forest East that children, parents and carers will be included in that endeavour. As my hon. Friend the Member for Chelsea and Fulham (Ben Coleman) said, the experiences of people like Amy inform such work. Let me say to my hon. Friend the Member for Alloa and Grangemouth (Brian Leishman) that the experience of Calum and the Turner family must not be repeated.

Hospices do an amazing job for people at the end of life, those with life-limiting conditions, and the whole community of family and friends who support their loved ones on that journey, including through bereavement support, as we have talked about today. The quality of care, the compassion and the love that hospices provide are second to none. We absolutely recognise that the sector faces challenges, and we are determined to work with all our partners to understand those challenges. We are not talking about spending more; we are talking about focusing on the money we have at the moment and spending it better. We are developing a values-based, outcome-focused financial model to reflect people’s experience of care throughout their lifetime. While there are no easy answers, we are supporting them with record funding and reform.