Improvements to Children’s Palliative Care and 24/7 Services Promised in Response to MPs’ Report

The Government has promised to set legal minimum standards for children’s and young people’s palliative care.

The update comes in ministers’ response to the Health and Social Care Committee’s recent report on strengthening England’s palliative care services.

In advance of the Government publishing a Modern Service Framework (MSF) to improve these services later this year, the response also pledges new legal guidance for improving 24/7 access to palliative care, which is badly lacking in some parts of the country.

There are also positive responses to the cross-party Committee’s recommendations to improve accountability and to guarantee access to the forthcoming Single Patient Record.

A summary of the response, provided by the Department of Health and Social Care (DHSC), is below.

Health and Social Care Committee Chair Layla Moran MP said:

“A sentiment shared by MPs across the political divides is that, shockingly, palliative and end of life care services fail too many people, right at the point when patients’ physical and emotional pain can be at their most acute. This is particularly true of services for children and young people – they and their families deserve the best of the NHS in their time of need.

“The Government has set a lot of store on its upcoming Modern Service Framework, and it has now has a lot to deliver on, but we welcome many of the responses DHSC has provided. Stronger accountability for failure to provide effective and compassionate palliative care will need to be addressed and we shouldn’t tolerate a system where going to A&E is the default substitute for a lack of 24/7 services.”

Children and young people’s palliative care

The Committee strongly recommend that the Department include specific standards within the MSF for children and young people’s palliative care services, and for the transition between child and adult services. MPs said pan-ICB commissioning guidance should contain specific information on how to commission these services effectively.

Response: the Government said it will provide these specific standards via updated statutory guidance which will be refreshed later this year.

Every area should have 24/7 end of life services

MPs said the forthcoming MSF should include specific guidelines and requirements for ICBs to enable access to 24/7 end of life services. DHSC should also provide an assessment of the workforce this would need and of the savings this could deliver through reduced visits to A&E.

Response: Statutory guidance on providing 24/7 services already exists, but providing these services isn’t mandatory. It adds that guidance will be refreshed “later this year” and that it is “committed” to improving access to 24/7 services throughout the country. This will be supported by the forthcoming MSF and workforce plan.

Consequences if standards aren’t met

The Committee said the MSF must set national standards for palliative care services that are backed by consequences if those standards are not met. Equally, DHSC should ensure ICBs have the support and resources they need to deliver them.

Response: DHSC will “drive and sustain the required changes in practice and behaviour across the system”. It adds: “Areas of action have been identified for those commissioning and delivering services with associated performance and outcome metrics to support system accountability.”

Access to Single Patient Record

The Government agrees with the Committee’s recommendation that social care and contracted third sector organisations should have access to the Single Patient Record, technology that is intended to make it easier to share patient information between service providers and the NHS app and improve efficiency.

Elsewhere in the response, the Government declines to directly answer the recommendation that palliative care training should be given to all generalist medical staff, and rejects calls to set a target for 90% of individuals in their last year of life to be included in the Palliative Care Register.