Palliative Care

Julian Lewis Excerpts

Thursday 5th March 2026 Commons Chamber

[Sir Julian Lewis (New Forest East) (Con)]

I begin by congratulating the hon. Member for York Central (Rachael Maskell) most warmly on her exemplary record in campaigning for better palliative care. I will address just one segment of her panoramic presentation, namely the work done by the charity that she briefly mentioned, Together for Short Lives. It provided me with a detailed briefing and I apologise in advance if I make some points that others, who may have received the same briefing, anticipate making.

Children’s palliative care enables babies, children and young people with life-limiting conditions, life-shortening conditions or severe medical complexity to live as well as possible until they die. Palliative care for children and young people is defined by the charity as

“an active and total approach to care, from the point of diagnosis throughout the child’s life, death and beyond.”

By embracing physical, emotional, social and spiritual elements, children’s palliative care helps to achieve the best possible quality of life and care for every child with a life-limiting or life-threatening condition and their family.

Giving families an opportunity to set out what they need and want is key to this approach. Children’s palliative care is holistic and is provided by a network of services in hospitals, homes and children’s hospices by the NHS and the voluntary sector, including children’s hospices. These services should be planned, funded and provided in a way that enables children and families to access them when and where they need them.

The key problem is the one that I am about to set out:

“In England, integrated care boards have a legal duty to commission palliative care for children, young people and adults that it considers necessary.

Across England and the wider UK, there is huge variance in the extent to which palliative and end of life care for seriously ill children and young people is being formally planned, funded and provided in ways that meet national and regional standards.

Of particular concern is children and families’ access to end of life care at home”—

we heard this from the hon. Member for Taunton and Wellington (Gideon Amos)—

“24 hours a day, seven days a week, provided by nurses and supported by advice from consultant paediatricians who have completed sub-specialty training in paediatric palliative medicine (also known as GRID training).

Despite some improvements, freedom of information…requests published in March 2025 have revealed that less than a fifth…of ICBs currently commission these services on a formal basis. Meanwhile, over a third…are still failing to meet this established national standard.

As a result, many families feel abandoned by a complex system which should support them to provide care once their child is diagnosed.”

I have been asked by the charity to raise a rather large number of questions, which I am going to cut down to just six, if I can manage to squeeze them in. The charity stresses the fact that the Government’s decision to allocate up to £80 million in ringfenced NHS funding for children’s hospices in England over the next three years is very welcome, but many challenges remain.

These are the six questions that I have picked out of more than a dozen and a half that I was presented with. First, will the Minister confirm that the modern service framework for palliative and end-of-life care, which we heard about from the hon. Member for York Central, will explicitly acknowledge the difference between adult and children’s palliative care and ensure that the needs of seriously ill children are not overlooked?

Secondly, can the Minister confirm that the framework will take a holistic approach and address the wide-ranging needs of seriously ill children and their families, including medical, emotional, social, psychological and practical needs?

Thirdly, will the Minister commit to using the upcoming 10-year workforce plan to examine how the existing children’s palliative care workforce can be used as equitably as possible, organising services into NHS-commissioned children’s palliative care operational delivery networks, such as I gather are used in neonatal care services, in order to help to achieve that?

Fourthly, can the Minister commit to increasing investment in specialist paediatric palliative medicine training by £2.4 million annually to address the funding gap identified by the charity Together for Short Lives?

Fifthly, do the Government support the call of the Royal College of Nursing for nurse-to-patient ratios in all health and care settings? Will they commit to tackling the shortage in NHS community children’s nurses?

Finally, with ICB funding for children’s hospices varying significantly across England, how is the Minister ensuring that every seriously ill child and their family, regardless of where they live, has equitable access to palliative care?