Palliative Care

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.