Variations in the delivery of palliative care services to adults

HSIB legacy content

This investigation was carried out by the Healthcare Safety Investigation Branch (HSIB). Find out more about HSIB legacy.

National investigation

We have started an investigation looking at variations in the delivery of palliative care services to adults in England.

Palliative care aims to improve the quality of life for patients with life-limiting illness, and their families, by taking a ‘holistic’ approach to physical, psychological, social, and spiritual care needs.

Palliative care may be received at hospital, at home, in a care home or in specialist units and hospices. Palliative care services are funded in England by the NHS and the private sector, including charities. Charitable bodies may support NHS-funded palliative care services or fully-fund services.

Across England, there may be geographical variations in palliative care provision, depending on funding arrangements and organisation of services. This may limit patient choice.

Reference event

The investigation was launched after we were notified of an event involving a 77-year-old man. The patient’s family reported their concerns about the availability of palliative care services within the region the patient lived, particularly a hospice-type environment.

The patient was diagnosed with a soft tissue tumour, following the discovery of a lump in his armpit. He received surgery at a specialist tertiary site, followed by a six-week course of radiotherapy.

Unresolving symptoms of nausea followed by pain just above his hip joint later prompted the patient to seek a review in the private sector. A subsequent CT scan revealed that he had widespread recurrence of the cancer and he was referred for palliative care.

The symptoms of nausea, pain and anxiety could not be controlled at home with the support of community services. Therefore, the patient was admitted to a specialist palliative care bed in a local community hospital, where care was jointly provided with a nearby hospice. Symptom control was challenging and only achieved at the end of his life. He died in the community hospital, nine months after the initial diagnosis.

Investigation summary

The investigation will:

Seek to understand the context and contributory factors inhibiting the ability of community palliative care teams to proactively consider the holistic requirements of adult palliative patients (physical, psychological, spiritual, and social).
Examine the ways in which patient and family expectations may differ from what is available in terms of palliative care services for adults in England.

Safety recommendations

NHS England

HSIB recommends that NHS England specifies a palliative and end of life care data set to help integrated care boards to understand their populations’ demographics and needs, in order to support commissioning and improvement of services.

As with Joint Strategic Needs Assessment (JSNA), Integrated Care Boards (ICBs) are free to understand their populations’ demographics and needs in a way best suited to their local circumstances. There is no template, format or mandatory data that must be used. As with JSNAs, a range of quantitative and qualitative evidence is encouraged for a detailed understanding of population need. There are a number of data sources and tools for quantitative data. These were listed by NHS England in their response. Qualitative information can be gained via, including but not limited to, co-production, surveys and events with people with lived experience.

Updated response:

Since the initial response, NHS England has worked to recommission an ICB-level dashboard that pulls together relevant data streams from primary and secondary care. This enables ICBs to better understand their population needs and to help plan services in their footprints. The data can be manipulated to explore aspects relating to service lines, service utilisation, population information, etc. Funding to renew the data quarterly for 2024/25 has been confirmed. The dashboard is available on the FutureNHS Collaboration Platform.

Response received on 6 October 2023 and updated on 26 July 2024.

NHS England

HSIB recommends that NHS England develops and promotes a minimum expected service specification for specialist palliative care in England to clarify the minimum services a person can expect to be available to them no matter where they live.

As stated in the Health and Care Act 2022, palliative and end of life care is commissioned by Integrated Care Boards (ICBs) in response to the needs of their local population. Consequently, some degree of variability is expected in order to effectively respond to differing population needs. However, there are a number of resources available to guide and support commissioners and providers in understanding and achieving high-quality palliative and end of life care. These resources were listed by NHS England in their response, alongside published palliative and end of life care service specifications for children and young people and adults.

Updated response:

ICB engagement is recognised as a key focus area and ongoing work is underway over the next 18 months. A variety of resources are available to commissioners on the FutureNHS Collaboration Platform, including a Commissioning and Investment Framework. This seeks to support local clarity on services available and the likely providers.

Response received on 6 October 2023 and updated on 26 July 2024.

NHS England

HSIB recommends that NHS England commissions palliative and end of life care career pathways, ensuring that they include staff from the allied health professions, in order to build specialist workforce capacity.

Work is being undertaken by NHS England to develop a allied health professional (AHP) career pathway that includes developmental education and training programmes. Palliative and end of life care will be built into these as possible, AHPs work across many areas and need this knowledge and skill, specialist roles require access to broad multiprofessional palliative care training and also require barriers to practice (e.g. prescribing) to be revised. The barrier to workforce development is the resource to develop training programmes, and to train, supervise and employ staff in these roles.

A multi-professional advanced practice training pathway for adult end of life care has been developed and is in the process of seeking an implementation partner, this will include the allied health professions. However, funding for advanced practice training roles and posts on qualification is a challenge.

Response received on 20 October 2023 and updated on 29 July 2024.

Safety actions

HSIB suggests the following actions for integrated care boards:

Identify and describe the palliative and end of life care services in their areas through engagement with integrated care partnerships and third-sector organisations. This is to provide the public and health and care professionals with accessible and accurate information about available services.
Support collaboration between health and care organisations to define clear routes of support for people in and out of normal working hours to ensure they know how to access help for palliative care and end of life needs.
Work with integrated care partnerships to account for capacity and resource in social care when planning palliative and end of life care services.
Support collaboration between health and care organisations, including those in the voluntary and charitable sectors, to encourage more open discussions about death and dying in their local communities, accounting for their population demographics.
Include palliative and end of life care in strategic workforce plans to ensure staffing of services is appropriately capable and can provide the capacity needed to meet demand.

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NHS England

Safety actions