Palliative Care

We were highly concerned by the findings of the Expert Panel’s report, which revealed a sector in need of urgent support across all settings, underserving individuals from already vulnerable patient groups. The end of life system is fragmented, difficult to navigate, and leaves individuals in the ‘gap’ between health and social care all too often. Without safeguards, the Government’s intention to shift palliative care to the community risks placing further unsustainable pressure on the community workforce, who are already overworked and under capacity. (Conclusion, Paragraph 8) The Modern Service Framework

We welcome the Government’s plans to introduce a Modern Service Framework to set national standards for palliative and end of life care services, and the Department’s commitment to co-produce this work alongside key stakeholders. However, we approach this with a level of scepticism, given the number of issues this Framework purports to resolve, and the risk the Government runs if this is not achieved. (Conclusion, Paragraph 16)

We are unclear about what is fundamentally different about this framework compared to existing documents, such as the Ambitions Framework and the NHS National Standards for Palliative and End of Life Care. In particular, what different approach it will take to ensure that the Framework is effectively implemented across ICBs and setting out the consequences of inaction. (Conclusion, Paragraph 17)

If the Modern Service Framework is to deliver meaningful change it must be more than a well-intentioned ambition. ICBs and the Department need to be held accountable for meeting the Framework, with clear consequences if its standards are not met. We call on the Government to set out, in its interim Report this Spring, what accountability arrangements will be in place to support implementation of the MSF and what concrete steps the 35 Department will take with ICBs that fall short. The Government must also ensure that ICBs have the support, tools and resources they need to deliver on the MSF. (Recommendation, Paragraph 18) Commissioning

We are concerned that the Minister was unable to commit to providing clear and specific standards and guidance for babies, children and young people’s palliative and end of life care in the Modern Service Framework (MSF). We strongly recommend that the Department includes specific standards within the MSF for the provision of children and young people’s palliative care services, and for the transition between child and adult services. Pan-ICB commissioning guidance should contain specific information on how to commission these services effectively. (Recommendation, Paragraph 26)

It is unacceptable that access to 24/7 palliative and end of life care services remains patchy throughout England. Individuals nearing the end of life should be able to access the right care, advice and medication, wherever they are and regardless of the time of day. We are pleased that the Minister committed to 100% telephone line coverage in England by 2027, but this is not enough. While telephone advice lines provide support and may prevent unnecessary hospital admissions, they are insufficient to build a resilient and effective out of hours palliative care service on their own. (Conclusion, Paragraph 35)

We recommend that the MSF includes specific guidelines and requirements for ICBs to enable access to 24/7 PEoLC services, including access to symptomatic medication, and in-person care where necessary. We call on the Government to provide an assessment of both the workforce needed to deliver such a service and the potential savings to the wider health and care service that such an offer would deliver. (Recommendation, Paragraph 36)

The role of social care in the provision of palliative and end of life care has been overlooked for far too long, and we are concerned that the Government’s plans to remove local authorities from ICBs will only make the current situation worse, particularly in the context of the Government’s aim to shift care into the community. We urge the Government to reconsider its decision to remove, through legislation, local authority representation on ICBs, to ensure social care is represented, understood and appropriately commissioned to deliver end of life care. (Recommendation, Paragraph 41) 36 Data

We support increasing use of the Palliative Care Register for early identification of individuals, including children and young people with PEoLC needs. However, we are concerned that its use is likely to decrease given the removal of funding incentives for primary care practitioners to add patients to the Register. (Conclusion, Paragraph 45)

We recommend that the Department implement the 90% target for the percentage of individuals in the last year of life documented on the Palliative Care Register and that it reports annually on progress against this target to monitor the impact of its decision to remove the financial incentive to add patients to the Register. (Recommendation, Paragraph 46)

National palliative and end of life care data provide valuable insight into patterns of healthcare use and location of death, however the evidence presented demonstrates substantial gaps in local data collection and utilisation. Without consistent, granular and timely data, ICBs and providers cannot reliably commission, plan, or improve palliative and end of life services in line with their population needs. (Conclusion, Paragraph 51)

We urge the department to mandate ICBs to maintain a fully populated palliative and end of life care dashboard that is actively used for commissioning, service planning, quality improvement, and inequality monitoring across their local system. (Recommendation, Paragraph 52)

Poor data sharing and lack of integration across NHS, social care, voluntary and private providers creates confusion, delays and gaps in continuity for people at the end of life, frequently placing the burden of coordination care on patients and carers during what is an extremely emotional and challenging period. Despite existing systems for data sharing, inconsistent uptake, poor interoperability and limited outcome-level information reduce effectiveness. (Conclusion, Paragraph 55)

If the Government intends for the introduction of the Single Patient Record to address concerns about a lack of service integration for palliative and end of life care, then this record must be available to all providers—including social care, the voluntary sector and private providers. The Government should also set out in its response to this Report how it will use the introduction of the Single Patient Record to drive integration across different types of providers. (Recommendation, Paragraph 56) 37 Workforce

Generalist staff, who provide most end of life care, often lack the skills, confidence and specialist support required to deliver high-quality, person-centred care. Despite existing initiatives, a clearer, system-wide approach to upskilling the generalist workforce is urgently needed. (Conclusion, Paragraph 63)

We recommend that end of life care be included as a core skill for the generalist health and social care workforce, with a clear and defined set of competencies required to deliver high-quality and person-centred palliative and end of life care. This should be reflected in the forthcoming 10 Year Workforce Plan. In particular, the critical role that social care staff play in delivering palliative care should be acknowledged in the Plan, and reflected in the training and support social care staff receive to enable them to provide this care in a more systematic way. While we welcome the Qualification in Specialism Standard for Palliative and End-of-Life Care, we ask the Department to provide further information in its response to this Report on who will be required to complete this training and when it will become available. (Recommendation, Paragraph 64)

Current shortages in the specialist workforce are putting palliative care services in an unsustainable position which threatens their ability to deliver equitable and high-quality palliative and end of life care. Extensive consultant vacancies, impending retirements, limited training places and widespread nursing shortages all contribute to an inability to meet demand, with particular staff shortages experienced in children and young people’s palliative care. This is an unacceptable situation, and urgent action is needed address these shortages. (Conclusion, Paragraph 68)

The Government need to publish an evidence-based plan, supported by up-to-date workforce modelling, setting out how it will increase the capacity and sustainability of all sectors of the specialist palliative and end of life care workforce, as part of the 10 Year Workforce Plan. This should include plans for clear training pathways and a specific target for the staffing of children and young people’s palliative care. (Recommendation, Paragraph 69) Bereavement

Bereavement, and pre-bereavement support are essential, yet access remains patchy, poorly commissioned, and often difficult to navigate. Despite its inclusion in the current Ambition Framework, significant gaps persist, particularly for culturally diverse communities and children and young people. (Conclusion, Paragraph 75) 38

The Government must hold ICBs to account for delivering bereavement services. This does not need to wait for the forthcoming Modern Service Framework as there are already clearly defined expectations for what ICBs should deliver in this area. In its response to this Report, we ask that the Department sets out how it will monitor ICBs’ current delivery of bereavement services, and what steps will be taken with ICBs that do not deliver an acceptable level of service. (Recommendation, Paragraph 76) Hospices

Hospices form an integral part of palliative and end of life care provision at home and in the community and we welcome the fact that the Government intends for them to play a bigger role as part of its shift to neighbourhood health. However, if the Government want hospices to deliver a universal and equitable service, this must be matched with additional resources. We were unconvinced by the Government’s argument that this will be addressed simply by improving the data that ICBs have access to. (Conclusion, Paragraph 83)

We recommend that the Government moves towards sustainable and predictable models of funding for hospices, financing their running as well as investment costs, which reflects the increasingly central role they will play in delivering end of life care. This funding should be accompanied by conditions that require hospices to play a greater role in actively addressing inequalities in access to their services. (Recommendation, Paragraph 84) 39