Palliative care data gaps

Committee recommendation

100match

#11 - 6th Report - Palliative Care

Health and Social Care Committee

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...

Matched on terms: care, gaps, palliative

Committee recommendation

98match

#13 - 6th Report - Palliative Care

Health and Social Care Committee

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...

Matched on terms: care, gaps, palliative

Committee recommendation

95match

#12 - 6th Report - Palliative Care

Health and Social Care Committee

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)

Matched on terms: care, palliative

Committee recommendation

94match

#18 - 6th Report - Palliative Care

Health and Social Care Committee

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...

Matched on terms: care, palliative

Committee recommendation

90match

#20 - 6th Report - Palliative Care

Health and Social Care Committee

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...

Matched on terms: care, palliative

Committee recommendation

90match

#19 - 6th Report - Palliative Care

Health and Social Care Committee

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

Matched on terms: care, gaps, palliative

Committee recommendation

90match

#17 - 6th Report - Palliative Care

Health and Social Care Committee

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...

Matched on terms: care, palliative

Committee recommendation

90match

#16 - 6th Report - Palliative Care

Health and Social Care Committee

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...

Matched on terms: care, palliative

Committee recommendation

86match

#22 - 6th Report - Palliative Care

Health and Social Care Committee

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...

Matched on terms: care, palliative

Committee recommendation

86match

#10 - 6th Report - Palliative Care

Health and Social Care Committee

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)

Matched on terms: care, palliative

Committee recommendation

86match

#7 - 6th Report - Palliative Care

Health and Social Care Committee

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...

Matched on terms: care, palliative

Committee recommendation

86match

#6 - 6th Report - Palliative Care

Health and Social Care Committee

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...

Matched on terms: care, palliative

Committee recommendation

86match

#5 - 6th Report - Palliative Care

Health and Social Care Committee

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...

Matched on terms: care, palliative

Committee recommendation

86match

#20 - 73rd Report - Financial sustainability of adult hospices in England

Public Accounts Committee

The Department and NHS England agreed that there are gaps in provision of palliative and end of life care and that it must meet demand where it is needed.39 They also acknowledged the importance of moving care away from costly acute settings into the community, citing a dashboard that they use to track patients who are receiving care...

Matched on terms: care, gaps, palliative

Committee recommendation

86match

#4 - 6th Report - Palliative Care

Health and Social Care Committee

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...

Matched on terms: care, palliative

Committee recommendation

86match

#3 - 6th Report - Palliative Care

Health and Social Care Committee

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,...

Matched on terms: care, palliative

Committee recommendation

86match

#2 - 6th Report - Palliative Care

Health and Social Care Committee

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...

Matched on terms: care, palliative

Committee recommendation

82match

#9 - 6th Report - Palliative Care

Health and Social Care Committee

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)

Matched on terms: care, palliative

Committee recommendation

82match

#27 - Departmental annual report shows significant omissions on preventative and end-of-life care.

Public Accounts Committee

The NHS Long Term Plan states that ill health prevention helps the public to stay healthy, as well as moderating demands on the NHS. The Department recognised in its 2023–24 Annual Report that there “is still much work to do to make a shift towards prevention in the NHS”.43 We observed that, with the exception of a very...

Matched on terms: care, palliative

Committee recommendation

82match

#21 - 6th Report - Palliative Care

Health and Social Care Committee

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...

Matched on terms: care, palliative

Committee recommendation

82match

#8 - 6th Report - Palliative Care

Health and Social Care Committee

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...

Matched on terms: care, palliative

Committee recommendation

81match

#14 - Integrated Care Boards need better population data to understand and support service provision.

Health and Social Care Committee

As identified in the report of the HSIB (now the Health Services Safety Investigations Body (HSSIB)) on variations in palliative care services to adults, we agree that better data on the population within an ICB catchment area needs to be acquired by ICBs so that they can more fully understand the needs of the population. This will allow...

Matched on terms: care, palliative

Committee recommendation

78match

#4 - 73rd Report - Financial sustainability of adult hospices in England

Public Accounts Committee

Too many patients spend their last days receiving palliative care in acute hospitals, which does not always achieve the best outcomes for patients nor represent value for money. Patients are frequently receiving palliative care and reaching the end of their lives in settings they would prefer not to be—in hospitals rather than at home or in a hospice—and...

Matched on terms: care, palliative

Committee recommendation

78match

#2 - 73rd Report - Financial sustainability of adult hospices in England

Public Accounts Committee

Only now are the Department and NHS England developing a Modern Service Framework for palliative and end-of-life care, but so far the details are unclear. There has not been a new national strategy for improving palliative and end-of-life care in England since 2008. The Health and Care Act 2022 set out a legal duty for ICBs to commission...

Matched on terms: care, palliative

PPO recommendation

77match

The Head of Healthcare

The Head of Healthcare should ensure that an end-of-life register is in place at HMP The Verne that enables early identification of those patients with palliative care needs and to proactively plan for end-of-life care.

Matched on terms: care, palliative

PHSO casework decision

73match

P-004533 - Central London Community Healthcare NHS Trust

Closed After Initial Enquiries

Mrs H complains about the care the Trust provided to her husband, Mr H on 24 July 2024. Specifically, she complains 1) the Trust’s official palliative care mobile phone was either switched off or left unanswered rendering Mrs H unable to get help and seek emergency end-of-life support for Mr H and 2) the Trust did not answer...

Matched on terms: care, palliative

Committee recommendation

72match

#19 - 73rd Report - Financial sustainability of adult hospices in England

Public Accounts Committee

Professor Murtagh told us that for a long time it has been known that around one in four adults who need palliative care do not get it, and that recent research suggests that the proportion may now be even higher.36 She went on to describe how a third of people receiving acute care in hospital are in the...

Matched on terms: care, palliative

Committee recommendation

72match

#10 - 73rd Report - Financial sustainability of adult hospices in England

Public Accounts Committee

There has not been a renewal of the government’s approach to delivering and improving palliative and end-of-life care in England since the first national strategy was published in 2008. The Health and Care Act 2022 introduced a legal duty for ICBs to commission palliative and end-of-life care services that meet the needs of their local populations. However, we...

Matched on terms: care, palliative

Committee recommendation

72match

#3 - 73rd Report - Financial sustainability of adult hospices in England

Public Accounts Committee

NHS England has been too slow to enforce a commissioning approach for the provision of palliative care that focuses on the quality of outcomes for patients. ICBs continue to fund hospices largely through grants and block contracts, despite the NHS widely using payment schemes that align payments with incentives and fund on the basis of activity and outcomes....

Matched on terms: care, palliative

Committee recommendation

68match

#25 - 73rd Report - Financial sustainability of adult hospices in England

Public Accounts Committee

The NAO report describes how independent hospices offer additional services that are typically outside the remit of the NHS, for example certain complementary therapies, funded from hospices’ charitable donations. Hospices offer support to the family, friends and carers of those receiving palliative and end-of-life care, for example through counselling and bereavement support. Many hospices provide training in palliative...

Matched on terms: care, palliative

Committee recommendation

68match

#22 - 73rd Report - Financial sustainability of adult hospices in England

Public Accounts Committee

Some hospices have recently reduced the volume or range of services they provide and others are planning to do so, at a time when demand for palliative and end-of-life care is rising.45 Hospice UK told us that hospices are facing a cliff edge from April, and if no new funding is injected into the sector before the new...

Matched on terms: care, palliative

Committee recommendation

68match

#1 - 73rd Report - Financial sustainability of adult hospices in England

Public Accounts Committee

On the basis of a report by the Comptroller and Auditor General, we took evidence from the Department of Health and Social Care (the Department) and NHS England on the provision of palliative and end-of-life care, and the funding of England’s independent adult hospices.1 We also took evidence from Baroness Ilora Finlay of Llandaff, Professor Fliss Murtagh and...

Matched on terms: care, palliative

Committee recommendation

68match

#26 - 73rd Report - Financial sustainability of adult hospices in England

Public Accounts Committee

Baroness Finlay emphasised the role that hospices have as an important source of expertise in palliative and end-of-life care, available to professionals in the NHS such as district nurses and care assistants.58 NHS England told us how hospices support training NHS professionals in palliative and end-of-life care skills and how to work in community settings.59 In lots of...

Matched on terms: care, palliative

Committee recommendation

68match

#24 - 73rd Report - Financial sustainability of adult hospices in England

Public Accounts Committee

NHS England agreed that the hospice sector is fundamentally in financial distress and that there is a need to move quickly to resolve and fix the problems. But it stressed the need to avoid perpetuating problems, such as supporting a provider delivering substandard care.54 NHS England wrote to us after the session to reiterate that the development of...

Matched on terms: care, palliative

Committee recommendation

68match

#13 - 73rd Report - Financial sustainability of adult hospices in England

Public Accounts Committee

The Department and NHS England told us about the ‘Modern Service Framework’ they are currently developing, which they intend will bring together disparate elements of the system and will set out what “good” commissioning for palliative and end-of-life care looks like.24 17 C&AG’s Report, para 3; Marie Curie (AHE0018) 18 AHE0004 (AHE0004); Dr Becky Ogundele , Dr Sarah...

Matched on terms: care, palliative

Committee recommendation

68match

#6 - 73rd Report - Financial sustainability of adult hospices in England

Public Accounts Committee

The NHS is at risk of losing the huge value it gains from independent hospices beyond the provision of statutory palliative and end-of-life care. Independent hospices provide enhanced care compared with the NHS, such as complementary therapies, funded from charitable donations. As well as patient care, they provide expert advice and training on palliative and end-of-life care to...

Matched on terms: care, palliative

IMB recommendation

68match

Altcourse (2020)

Altcourse is seeing, as are other prisons, an increase in its age profile. Many older prisoners require more age-appropriate accommodation, enhanced or more specialised healthcare provision, and in some cases end-of-life care and palliative care. The prison developed an excellent older person’s strategy, but this could only be partially implemented owing to finite finance and lack of an...

Matched on terms: care, palliative

PHSO casework decision

65match

P-001182 - Imperial College Healthcare NHS Trust

Upheld

Mr O complained about the Trust’s care and treatment provided to his partner, Miss I, for kidney stones. Mr O also complained about the Trust’s decision to start palliative care and the care that was provided.

Matched on terms: care, palliative

Committee recommendation

64match

#16 - 73rd Report - Financial sustainability of adult hospices in England

Public Accounts Committee

NHS England told us that ICBs are required to understand the needs of their populations and their projections of future demand.30 NHS England acknowledged that it must take the lead on establishing a single commissioning approach for the provision of palliative care. To support ICBs to become better strategic commissioners, NHS England told us of a strategic commissioning...

Matched on terms: care, palliative

IMB recommendation

64match

Usk and Prescoed (2025)

HMPPS should consider specific measures to address the increased demand for general and palliative healthcare, additional resources and funding (e.g., expanded weekend services, more staff for hospital escorts), and the unsuitability of HMP Usk's current infrastructure for older individuals, ensuring plans meet complex needs in the medium to long term.

Matched on terms: care, palliative

PHSO casework decision

64match

P-002256 - University Hospitals Birmingham NHS Foundation Trust

Closed After Initial Enquiries

Mr R complains about how the Trust cared for his father. He says it did not give him support, provide palliative care or give him dignity at the end of his life.

Matched on terms: care, palliative

Committee recommendation

61match

#53 - Record detailed post-16 pathway and long-term outcome data for care-experienced individuals.

Education Committee

The Department must record data on post-16 pathways and attainment for those with care experience—including detailed data on qualifications, course types and completion rates. The Department should also monitor long-term outcomes—employment quality, income levels, and 100 higher education progression for those with care experience—and take steps to address existing disparities through the National Care Offer. (Recommendation, Paragraph 197)...

Matched on terms: care

Committee recommendation

60match

#5 - 73rd Report - Financial sustainability of adult hospices in England

Public Accounts Committee

The Department and NHS England are not responding to the growing financial crisis in the adult hospice sector with the seriousness and urgency needed. The independent hospice sector is facing a serious financial situation that is already affecting patient care. Demand for hospice care is rising, but most hospices are reporting growing deficits, while several have announced cuts...

Matched on terms: care

PHSO casework decision

60match

P-001867 - The Princess Alexandra Hospital NHS Trust

Closed After Initial Enquiries

Mrs E complains about the Trust's palliative care and treatment of her son in April 2021. She complains about its communication, pain management and how available its doctors were.

Matched on terms: care, palliative

PHSO casework decision

60match

P-003498 - A practice in the Suffolk area

Closed After Initial Enquiries

Mrs R complains the Practice did not appropriately manage her husband’s palliative care. She says it did not properly manage his pain relief and delayed referring him to a hospice.

Matched on terms: care, palliative

PHSO casework decision

60match

P-001312 - A care provider in the Leeds area

Closed After Initial Enquiries

Mr N complained about the quality of palliative care and wound management the care provider gave to his cousin, Mr O, who was a nonverbal communicator.

Matched on terms: care, palliative

PHSO casework decision

60match

P-001635 - A medical practice in the Havering area

Closed After Initial Enquiries

Mrs E complains the Practice did not add her husband to its palliative care register in September 2020 meaning he did not get the needed pain management, oxygen, steroids, and palliative care visits that he should have.

Matched on terms: care, palliative

Committee recommendation

57match

#51 - Care leavers face significant challenges transitioning into further education, employment or training.

Education Committee

Care leavers face significant challenges transitioning into further education, employment or training. Care leavers aged 19–21 are three times more likely not to be in education, employment or training than their peers. There is insufficient support for those transitioning into further education or training. There is also a lack of official data on post-16 education pathways, attainment and...

Matched on terms: care

Committee recommendation

56match

#17 - 73rd Report - Financial sustainability of adult hospices in England

Public Accounts Committee

Professor Murtagh stressed that ICBs need to commission on the basis of activity and outcomes. Professor Murtagh explained that this approach is already used elsewhere in the NHS through a blended payment model that aligns payments with incentives, and questioned why it is not being used to commission care from hospices.32 She drew attention to the loss of...

Matched on terms: care

IMB recommendation

56match

The Verne (2024)

The Minister to consider establishing an end-of-life care facility at HMP The Verne.

Matched on terms: care