Palliative Care

Julian Lewis Excerpts

Thursday 26th March 2026 Commons Chamber

[Layla Moran (Oxford West and Abingdon) (LD)]

On behalf of the Health and Social Care Committee, it is a pleasure to present to the House our sixth report, which is on the subject of palliative care. This is the second report we are presenting to the House in as many weeks, because the Committee is in a hurry to play our part in fixing the NHS and social care, and especially to shine a light on those areas that feel more intractable and that historically get less attention. This is clearly true for the area of palliative and end-of-life care. We welcome the more recent renewed focus on the very sensitive issue of death—it will happen to us all, yet too often as a nation, we leave it far too late to talk about it. That is perhaps why, despite the fact that it will be a universal experience, death does not often receive the political attention it deserves.

We began by asking our independent expert panel to look at the heart of this system. The panel is made up of health and care experts from a range of disciplines—clinicians, lawyers and health economists, as well as temporary members with expertise in palliative care—and is ably led by Dr Jane Dacre. I am grateful for their work. Their report drew on available evidence, the Government’s own standards and the lived experience of patients, their families and professionals. The panel found a sector in critical condition: fragmented, failing and forgotten. Our report took those findings and combined them with the session where we quizzed the Minister for Care—I thank him for being in his place today—and his officials.

Our 22 conclusions and recommendations span six main areas: the modern service framework, commissioning, data, workforce, bereavement, and hospices. Nowhere is the failure of this sector more acute than in the care of babies, children and young people. The expert panel identified serious inadequacies for this vulnerable and under-served group. One clinician told us that children are “just an add on”, and another said:

“There is a severe lack of 24/7 cover for community children’s nursing, and no investment into it either.”

We are concerned that the Minister was unable to commit to providing clear and specific standards and guidance for babies, children and young people, and we strongly recommend that standards for that group and for the transition between child and adult services are made a priority. We also need pan-integrated care board guidance on commissioning services for babies, children and young people. There are too few of these services, so we need to pool resourcing.

The expert panel’s report also revealed a distressing and deep-seated postcode lottery for all in palliative care. A lived experience witness said:

“I went there, and he was screaming—clearly dying, in absolute agony and very, very distressed. And it took for me to ring so many different people to get someone to actually listen to me say, ‘I don’t care if he had pain relief two hours ago, he needs some more now and he needs something different.’

He died early the next morning. I know this would not have happened in my local area—so that made it an even more distressing experience”.

That heart-wrenching story—there are many others—is so common in these reports. We found that many ICBs lack sufficient understanding of their local needs to commission effectively. Competing financial pressures mean that palliative care is so often pushed to the bottom of the pile, and the culture of understanding needs to come right from the top. Structural and geographic inequalities persist, and deprived and marginalised communities face significant unmet need. To fix that will require high standards and accountability across the country, which is why the forthcoming modern service framework is so important, and we welcome it.

The Minister told the Committee that making palliative and end-of-life care one of the first five modern service frameworks was a “bat signal” to the system. We welcome that, if not the mental image of him as the caped crusader, but we approach the MSF with a healthy dose of scepticism. What is fundamentally different this time? There have been frameworks before, most notably the palliative and end-of-life ambitions framework and the NHS national standards for palliative and end-of-life care. This time, we need more than well-intentioned ambition; we need action, accountability and assurance. The Committee recommends that ICBs and the Department are held accountable, with clear consequences for failing to meet standards. We must ensure that ICBs have the support, tools and resources required to implement these high standards. We cannot allow this to be another framework that gathers dust on a shelf.

The thing is, Madam Deputy Speaker, we are not meeting the guidance that already exists. Let us take 24/7 advice lines, which could offer guidance, reassurance and support for care at home, potentially reducing A&E admissions. At present, just 43% of ICBs offer them properly. That is despite the fact that 24/7 telephone advice lines have been recommended as a minimum service requirement by the National Institute for Health and Care Excellence and the Department for more than two decades. The role of pharmacies is also critical, but they too need support to deliver. The Minister has committed to 100% coverage of telephone lines by 2027, but we push him further: the MSF must mandate ICBs to deliver not just telephone lines, but access to all services, including symptomatic medication and in-person care. Unfortunately, death does not wait until 8 am on a Monday morning.

A further concern was the effects of the shift to the community. We worry that funding restraints and workforce and skill shortages will make that transition difficult. In the same breath as saying that they want this shift, the Government’s forthcoming NHS reorganisation Bill is proposing to remove local authority representation from ICBs. Local authorities are responsible for social care, and social care workers are the backbone of end-of-life care, with 22% of deaths occurring in care homes. If we want to strategically commission end-of-life and palliative care, it is nonsensical to remove local authority voices from the top table and that strategic role right from the off. We therefore urge the Government to reconsider their position.

We also urge the Government to fix data sharing. One clinician told us:

“If there was more willingness to link data and allow ICBs to have a better view of it and work with partners”—

hospices and the third sector—

“they could better understand the need and actively address health inequalities.”

Of the 1% of our population who die each year, only around half end up on the palliative care register, and that is despite financial incentives for GPs to put them there.

The Government have a welcome stretch target of 90%, but they have also removed the financial incentives for GPs to maintain the registers. We are concerned that that will result in a decrease, not an increase, in those who are registered. We recommend that the Department reports progress on the 90% target annually, and we welcome the single patient record to drive integration, but we want to understand better how that data will be shared not just with the NHS, but across all partners involved in end-of-life care.

We cannot deliver this change without our workforce—the people. Vacant posts in this area are mounting, and only 30 to 40 new consultants qualify each year. We await the 10-year workforce plan with bated breath, but we hope that it also includes specific measures to address children’s palliative care staffing. It is not just the specialists but the generalists who should get better training in this area. At the moment, too many nurses in the community might send a patient to acute care because they cannot adequately manage risk with confidence. If they knew what to do in that moment, they may decide not to call 999 and instead have better care where the patient is. That is clearly better for everyone involved and is far less distressing.

Finally, I come to hospices. So many are recipients of fundraising from marathon runs and bake sales. It strikes the Committee as nonsensical that this important part of the sector is funded primarily through charity. We welcome the multi-year settlements made more recently and the money into capital, but we make the point that if hospices are to help lead the way out of this crisis, they need much better and more long-term support.

The Government’s modern service framework must be more than just a press release. It must be a pledge to every citizen that when their time comes, they will be supported, not stranded. We owe it to the thousands of people facing their final days today, and to the families who will remember their care forever, to finally get it right this time.

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

May I congratulate the hon. Lady on an excellent statement about what sounds to be a fascinating and detailed report? I was particularly impressed with the amount of time she dedicated to considering children’s palliative care. She may recall the debate in Westminster Hall earlier this month, when I mentioned that the charity Together for Short Lives had a particular idea about how to combat what she rightly emphasised—namely, the wide variation from place to place in the availability of palliative care services, particularly specialised ones for children. Did her investigation consider the recommendation that the NHS ought to organise the existing children’s palliative care services into palliative care operational delivery networks, similar to those used in neonatal care service provision?

[Layla Moran]

I commend the right hon. Gentleman for his campaigning on this issue over many years. Together for Short Lives was indeed a contributor to the two reports. Its specific recommendation on babies, children and young people’s care was that we need better specialist pan-ICB commissioning that is modelled on other services. They are a tiny proportion of an already tiny population, and they are so often forgotten. As I mentioned in my speech, they are considered an add-on at the end of a commissioning process, but we need to start with them. They deserve so much more thought than they currently get.