Written evidence submitted by Wolfson Palliative Care Research Centre (PLC0046)

1.  COMMISSIONING OF PALLIATIVE AND END OF LIFE CARE IN ENGLAND

1.1  Resourcing:

1.1.1.     Funding and commissioning for palliative and end of life care – is it enough to meet demand?

1. We have recently completed secondary analyses of UK Health Accounts data and Hospice UK

Accounts data, for the period 2013 – 2022 (in preparation for publication but not yet submitted).

2. Our results show that real terms spending on government-funded health-related long-term care grew by 20.9% between 2013 and 2022, while real terms spending on specialist palliative care (both government-funded and charitable-sector funded) grew by only 10.7% over the same period.
3. This suggests that expenditure on specialist palliative care may well not be keeping pace with what is needed for the changing population demand.

a.      To give more detail, real terms expenditure on specialist palliative care (as reported by the Hospice UK Accounts) grew from £1,027 million in 2013 to £1,137 million in 2022. This growth of £110.0 million represents a proportionate increase of 10.7% in expenditure on specialist palliative care by Hospice UK member organisations over the ten-year period analysed.

b.      Real terms expenditure on specialist palliative care decreased in 2018, and in the years 2020 to 2022 consecutively. Note that this is reported in the Hospice UK accounts; it relates to specialist palliative care expenditure for community specialist palliative care and inpatient hospice beds, but does not include specialist palliative care delivered in hospitals.

4. It is worth emphasising that the NHS only partly funds specialist palliative care; across the UK, there are 204 specialist palliative care services (providing inpatient hospice beds and community specialist palliative care services) under the Hospice UK ‘umbrella’. Of these, only 24 are NHS organisations; the remainder are charitable organisations. It cost £1.8 billion each year to run the UK hospices (see https://www.hospiceuk.org/about-us/key-facts-about-hospice-care) of which about £1.1 million is spent on direct patient care (both community specialist palliative care and inpatient hospice beds) and education of professionals to support that care (the remaining £0.7 billion is spent in fundraising and related activities).
5. So overall, hospices raise over £1.3 billion of the total £1.8 billion needed through fundraising, and less than £0.5 billion comes from the NHS (see https://www.hospiceuk.org/about-us/key-facts- about-hospice-care).
6. Hospice fundraising has been severely constrained by the cost-of-living crisis and the reduction in charitable donations; a number of hospices are now having to cut staff, close beds, and are in or at risk of financial deficit, despite the recent £126 million Government investment (announced in Dec 2024 – see https://www.gov.uk/government/news/biggest-investment-into-hospices-in-a-

generation).

7. Expenditure on ‘generalist’ palliative care cannot be identified separately within UK Health

Accounts or other sources, so it is impossible to make a similar comparison for ‘generalist’ palliative care or identify how much of overall primary and community care is ‘palliative and end of life care’.

8. We can provide some limited evidence about general practitioners and district/community nurses contributions to palliative and end of life care, and have done so below – see Section 2.2.8.

1.1.2 How could funding and resource be channelled differently to improve the commissioning process for palliative and end of life care?

Please note: the evidence in this section is from a recent report prepared for the Dept of Health and Social Care as part of our Policy Research Unit work; the full report can be provided on request. The reference is Clarke, G., May, P., Cook, A., Mitchell, S., Walshe, C., Bajwah, S., Yorganci, E., Kumar, R., Fraser, L.K.,

Sleeman, K.E., Murtagh F.E.M. (2025). Costs and cost-effectiveness of adult palliative and end-of-life care. Evidence briefing summary. London: National Institute for Health and Care Research (NIHR) Policy Research Unit (PRU) for Palliative and End-of-Life Care. The summary is available at: https://www.kcl.ac.uk/nmpc/assets/research/costs-and-cost-effectiveness-of-adult-palliative-and-end-of- life-care-evidence-briefing-summary.pdf

i.            Given the overall distribution of formal healthcare expenditure during last year of life (see

Figure), attention needs to be paid to reducing i) unplanned hospital admissions in last year of life, and ii) reducing length of stay in acute hospitals.

2. Using 2017 data, we estimate that, per person who died (and based on all adult deaths), mean total formal healthcare costs in the last year of life were £19,051. The most dominant component of formal healthcare costs by a long distance is the acute hospital setting (£14,796, 78% of formal healthcare costs). If this data is scaled to 2024 costs, mean total formal healthcare costs in the last year of life are £24,222 (see figure below which represents this).

Figure: Composition of total formal healthcare costs per decedent in the last year of life, based on 2017 costs and adopting standard inflation to reflect 2024 costs (bubble size represents the

relative proportion of costs for that sector).

3. Overall, less than 1% of the population dies annually but this group accounts for approximately 8% of NHS spending.

iv.            Specialist palliative care, comprising consultation teams in acute hospitals and specialist palliative care in the community and in hospices, accounts for only 6% of formal costs. Given the evidence

presented at section 2.2.5 and section 2.2.6 about the value of specialist palliative care, 6% appears to be very little.

5. While evidence of cost-effectiveness of palliative and end-of-life care interventions is limited to date, in this report, we identify three key areas with the greatest weight of evidence of

effectiveness and overall potential cost savings, to consider providing and scaling up across England. These are:

1. Investment in timely (earlier) identification of palliative care needs in acute hospitals, and earlier referral for specialist palliative care during an acute hospital admission. This has strong potential for cost savings through expedited discharge, fewer tests and treatments, and reduced intensity of stay, while improving effectiveness of care through improved

quality of life including pain and symptom burden. International evidence demonstrates that timely (earlier) referral for specialist palliative care consultation during a hospital admission is likely to bring overall cost savings. Identifying palliative care needs in acute hospitals is

also likely to better address current inequities in access to palliative and end-of-life care given the high prevalence of acute hospital use in the last months of life, particularly by groups least likely to access palliative care.

2. Inclusion of palliative care and end-of-life care in national policy and contractual levers to drive ICB investment into equitable palliative care and end-of-life care, delivered by generalist- and specialist- integrated neighbourhood teams. This aligns with the strategic shift of care from hospital to community and resonates strongly with the recent

Neighbourhood health guidelines 2025/26 (NHS England, 2025 – see https://www.england.nhs.uk/long-read/neighbourhood-health-guidelines-2025-26/ ).

Strengthened generalist- and specialist- integrated neighbourhood teams would deliver potential for cost savings through reduced use of the emergency department and decreased inpatient stays. To be effective, the evidence indicates that key components of such models must include: meaningful and effective integration and coordination to avoid

fragmentation of services for patients; sufficient time to provide relational person-centred care; continuity of care including out-of-hours provision; staff training and development of expertise; agility to respond rapidly to changing patient needs; and support for family

carers. Home palliative care is already delivered but is currently provided very inconsistently (and sometimes not at all).

3. Ensuring robust out of hours care with prompt home visits for crisis care and dedicated palliative care telephone support lines in all areas, staffed by professionals with experience and training in palliative care, as recommended in NICE guidance since 2011. Dedicated

palliative care telephone support lines, as part of robust out of hours care, have the potential for cost savings through reduced hospitalisations, emergency department use and reduced face-to-face consultations. They could better support families and carers with

reliable support to cope when their loved one has palliative care needs or is dying. This includes 24/7 out of hours care, which needs to involve: prompt home visits for crisis care, and dedicated palliative care telephone support lines staffed by professionals with

experience and training in palliative care and end of life care (either generalist or specialist). Out of hours palliative care is already delivered in some areas, but is currently provided very inconsistently.

1.2  Impact:

1.2.1  Current provision of palliative and end of life care from the perspectives of what people and their families receive – is it enough?

1. Rather than considering only what is commissioned or provided, we can look directly at what people needing palliative and end of life care themselves say about whether enough care is being provided.
2. In 2022, we undertook a nationally-representative post-bereavement survey (see https://www.mariecurie.org.uk/document/experiences-at-the-end-of-life-in-england-and-wales)

across England – surveying randomly sampling bereaved families who had registered the expected deaths of a family member, in order to get an accurate reflection of current experiences of care in last three months of life.

3. We asked respondents about what services their family member who died had received in the last three months of life.

iv.            Use of acute services:

a.      More than half of those who died (54.7%) had used an ambulance at least once in their last three months of life. Among these people, the mean number of ambulance contacts was 1.9 (standard deviation [SD1]=2.66, median=1, range: 1-38).

b.      Almost half (49.0%) of those who died had attended an A&E department at least once in their last three months of life. Of those who had visited A&E, the mean number of visits was 1.8 (SD=1.75, median=1, range: 1-31). 70.6% (n=408) of A&E visits resulted in overnight stays.

c.       More than half of those who died (56.0%) had stayed overnight in a hospital ward. The mean number of stays was 1.7 (SD=1.09, median=1, range: 1-14). Of this group, the mean number of days spent in a hospital ward was 23.4 (SD=23.74, median=15, range: 1-90). Overall, 12.4% of the people who died spent more than 30 days of their final 90 days in a hospital ward.

v.            Use of primary and community services:

a.      1,018 (86.3%) of those who died had contact with primary care professionals: 80.7% had contact with a GP (51.8% over the telephone and 68.6% in person), and 53.4% had contact with a district or community nurse. For those who did have contact with a GP, the mean number of contacts face-to-face was 3.5 (median 2, IQR2 1-4) and by telephone was 3.8 (median 3, IQR 2-5). For those who did have contact with a district or community nurse, the mean number of contacts was 12.2 (median 5, IQR 2-10).

b.      Almost one in five (19.3%) people who died had no contact with a GP (either in person or over the telephone) in their final three months of life, despite this being an expected death. Problems accessing GPs were common in the free-text responses, with respondents describing struggling to get through to GP surgeries, to make appointments, or to arrange GP home visits. For example, “You had to telephone at 8am, but either there were no appointments, or you just got cut off”. Similarly, “[We had] difficulty accessing the GP, as receptionists were not helpful in facilitating this. A hospital avoidance plan was in place but was dependent on accessing a GP” (which did not occur).

vi.            Use of specialist palliative care services:

a.      Contact with community-based specialist palliative care professionals was less common; only 29.1% reported contact with palliative care doctors, nurses, or ‘hospice at home’ teams.

vii.            Their overall experiences of care:

a.      Respondents reported that staff across all settings did not have enough time to provide care for dying people.

1 Standard deviation

2 Inter-quartile range

b.      Almost half of those surveyed were unhappy with some aspects of the care the person who died received.

c.       One in 17 made a formal complaint about the care the dying person received.

d.      Recognition of palliative care needs was often considered to be too late (this completely concurs with reports from district and community nurses, see section 2.2.8 and section 4.1.2).

e.      The free text responses to this survey reported again and again how access to and provision of care was difficult, especially at home, how the families were left to cope in difficult and distressing circumstances, how care out-of-hours was not available. This was often reported in the free text answers. One respondent said “A good death will never be achieved whilst there is a lack of care in the NHS, overworked, badly paid and understaffing in care homes and allowing people to be within hours of death before they are admitted to a hospice for palliative care”.

2.  DELIVERY OF PALLIATIVE AND END OF LIFE CARE IN ENGLAND

2.1  Resourcing:

2.1.1  Provision of ‘out of hours’ palliative home care is patchy and often does not meet NICE standards:

i.            In the UK, most home-based care is provided Monday to Friday between 9am and 5pm. Over 75% of each week consists of evenings, weekends, and bank holidays and occurs outside of daytime working hours, when help may not be readily available.

ii.            Since 2011, NICE has recommended that adults approaching the end of their life and their family carers should have access to support at any time, including ‘out of hours’ and via designated telephone support lines (https://www.nice.org.uk/guidance/qs13/chapter/Quality-statement-4- Out-of-hours-care).

iii.            In research conducted across England, we asked whether designated telephone lines for patients with palliative and end of life care needs and their informal carers were available out-of-hours. In 27% of the 60 areas surveyed, a designated phone line was not available, while in a further 42% of areas this service covered only part of the out-of-hours period, was limited by geography, or

constrained by workforce availability (see

https://www.mariecurie.org.uk/globalassets/media/documents/policy/beol-reports-2022/better- end-of-life-report-2022.pdf ).

iv.            In the same research, we separately identified that rates of emergency department attendance increase rapidly (4 or 5 fold) during the final three months of life, with out-of-hours visits increasing more than in-hours visits in last three months of life, and especially in the last month of life (see https://www.mariecurie.org.uk/globalassets/media/documents/policy/beol-reports-2022/better- end-of-life-report-2022.pdf ).

2.2  Effectiveness:

2.2.1  Evidence shows mixed evidence about the longer-term benefits of advance care planning, but good evidence of shorter-term benefits:

1. It is not clear whether advance care planning (ACP) delivers all of the benefits expected (see the comprehensive 2022 systematic review of 132 trials of ACP https://bmjopen.bmj.com/content/bmjopen/12/7/e060201.full.pdf ).

2. Evidence about longer-term benefits (such as improved quality of life and mental health, and reduction in healthcare use/costs) is very mixed, but there is evidence of shorter-term impact, such as better quality of patient–physician communication (in 68% trials which measured this; 13/19), greater preference for comfort care (in 70% trials; 16/23), reduced decisional conflict (in 64% trials; 9/14), and improved patient-caregiver congruence in preferences (in 82% trials; 18/22).

2.2.2  Current evidence shows advance care planning conversations are often not taking place in England:

8. In 2023, we reported on a nationally-representative post-bereavement survey (see https://www.mariecurie.org.uk/document/experiences-at-the-end-of-life-in-england-and-wales)

across England – surveying randomly sampling bereaved families who had registered the expected deaths of a family member, in order to get an accurate reflection of current experiences of care in last three months of life.

9. For almost 40% of these expected deaths, no conversation about the possibility of deterioration and dying had taken place with the person who died, and for 30% of these expected deaths, no conversation about the possibility of deterioration and dying had occurred with the family either.
10. This is despite the fact that these were expected deaths, where deteriorating health and increasing care needs were clearly occurring beforehand; free text responses to the survey reflected the distress and difficulty this caused for people and their families.

2.2.3  There is as yet NO good evidence that electronic palliative care coordination systems (EPaCCs) or shared records work:

1. The current evidence on electronic palliative care coordination systems (EPaCCS) or shared records comprises              expert              opinion              or              observational              studies              (see https://pmc.ncbi.nlm.nih.gov/articles/PMC3960646/ and see references at end of this submission).
2. Some benefits are suggested e.g. dying in preferred place, better identification of goals of care, and shorter lengths of hospital stay but not yet confirmed through robust research.
3. Measures of success have also relied on documentation of an advance care planning conversation in electronic health records, but this fails to determine whether experiences and outcomes of care are improved or not.
4. Much also depends on the quality of the underlying conversations, whether they reflect dynamic and changing situations/preferences, and whether the ‘sharing’ of records actually works effectively.
5. No UK research has yet evidenced whether EPaCCS or shared records (i) support advance care planning or not, (ii) are offered equitably to all or not, (iii) have any effect on place of death or concordance with preference for place of death; or (iv) are associated with any change in use of health resources.
6. To address this evidence gap, and together with colleagues at Leeds, King’s College London, and other Universities, we are currently undertaking a study in London, Bradford, and Leeds to examine the influence of EPaCCS or shared records on healthcare outcomes, service utilisation, and costs. Additionally, it will examine how social determinants of health influence their content and use. We anticipate reporting our findings by April 2026.
7. Additional references on this topic are supplied at the end of this document.

2.2.4  Evidence from professionals indicates that EPaCCs and shared records are often problematic to access and use:

1. In our research in 2022 about out-of-hours care, (see

https://www.mariecurie.org.uk/globalassets/media/documents/policy/beol-reports-2022/better- end-of-life-report-2022.pdf ), we specifically asked about EPaCCS or shared care records and how/whether these were working.

2. Shared records – in some form – were available in over 95% of areas, but challenges regarding their access and use were often reported: for instance, “It is a wish list really, but it would be useful to have one system that everyone can use as it is challenging with the multiple systems available”.
3. Some progress was reported: for example, “COVID-19 has pushed the use of technology into a helpful direction, which has opened a lot of new avenues.”
4. Usually, some sharing of records between services was in place (often reported as ‘partial’), although the extent to which this worked in practice was very variable.
5. The accuracy and speed of information flow between setting caused challenges, and there were often concerns that EPaCCS or shared care records were not updated to reflect changing clinical situations and preferences.

2.2.5  The current model of delivering specialist palliative care is very well evidenced based and informed by robust evidence of what works best:

1. We undertook a very large systematic review with meta-analysis and meta-regression, using new methods to pool robust evidence about the effectiveness of specialist palliative care from robust studies (randomised controlled trials) undertaken over the last 25 years.

(see https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1004436 ).

2. This shows that specialist palliative care works and works well. It provides better quality of life and better emotional wellbeing for people with advanced disease, with moderate/good effect sizes. We demonstrate a ‘number needed to treat’ similar or better than many other well-accepted interventions, such as cardiac rehabilitation.

2.2.6  In England, we provide too little specialist palliative care and too late for full benefit:

1. Our large synthesis of evidence over the last 25 years

(https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1004436) shows that – in England – we provide too little specialist palliative care, and too late.

2. The current common practice across England is for referrals to specialist palliative care to be too late for real benefit; currently, most referrals occur within weeks of death; our data seriously challenge this practice because the evidence shows that specialist palliative care needs three months to maximal benefit (although there is certainly some benefit before then).
3. See https://journals.sagepub.com/doi/full/10.1177/0269216318781417 - a national study with 42,758 people who died, which showed the median time from referral to death across specialist palliative care services nationally was 48 days; cancer (53 days) and non-cancer (27 days).
4. Specialist palliative care picks up the most complex cases and often relieves the NHS including reducing unplanned admissions and bed-days; but its ability to do this is reducing markedly, as third sector providers experience major financial and workforce squeezes, and reduce the numbers and duration of those seen.

2.2.7        The evidence on palliative and end of life care at home

1. We undertook a recent very large umbrella review of in-home palliative care (including both ‘generalist’ and ‘specialist’ palliative care - see

https://www.medrxiv.org/content/10.1101/2025.02.14.25322267v1) and identified a variety of different models of care.

2. Components of care included: holistic person-centred assessment, skilled professionals, access to medicines/care/equipment, patient/family support, advance care planning, integration of services, virtual/remote technology, and education.
3. We categorised outcomes into: i) patient outcomes, ii) family/informal caregiver outcomes, iii) professional outcomes, and iv) service utilisation/cost outcomes.
4. The ‘in-home palliative care’ model was most researched with good evidence of positive benefit.

5. Specialist and integrated models of care were next most researched, with evidence of improved patient and service utilisation outcomes. Cost-effectiveness evidence was lacking.

i.            This meta-level evidence supports provision of in-home palliative care, with most review level evidence showing positive effect on patient outcomes.

ii.            There was also evidence to support specialist palliative care and integration of primary palliative care with specialist support.

2.2.8 The evidence on ‘generalist’ palliative and end of life care provision (district and community nursing):

Please note: the evidence in this section is from a recent report prepared for the Dept of Health and Social Care as part of our Policy Research Unit work; the full report can be provided on request. This work was a review of current evidence and expert consultation to better understand the contributions, roles, responsibilities and integration of district and community nurses in palliative and end-of-life care in community settings. We included 232 sources of evidence (papers, reports, and other grey literature) in our review and have synthesised the evidence here.

1. District nurse numbers are in steady decline. There are now fewer than 4,000 full time equivalent district nurses in England, which represents less than one district nurse per 15,000 population, and only one district nurse for every 62 deaths each year which occur out of hospital and with palliative care needs.
2. The numbers of community nurses are impossible to ascertain because they have such diverse roles and titles, and are employed by diverse (NHS, third sector, social enterprise) organisations; there is no one source of their numbers. However, in 2024, the numbers of district nurses and community matrons combined were reported as around 5,000 full time equivalents, which indicates about 1,000 community matrons.
3. Among NHS community nursing staff (including nursing assistants) less than 3,000 full time equivalents had any palliative and end-of-life role documented in their electronic staff record (this includes primary, secondary or tertiary roles).
4. About 10% of all district and community nurse face-to-face contacts relate to care of people in the last three months of life. There is no data about what proportion of people seen by district and community nurses are in last year of life, but it will likely be notably higher than this.
5. District and community nurses provide highly valued relational care (care underpinned by knowledge of and continuity with patient/family over time) but their contributions to palliative and end-of-life care have gone under- or unrecognised for many years.
6. Alongside the major fall in numbers of district nurses, their expertise, experience and skill relating to palliative and end-of-life care is no longer always recognised, nor understood as pivotal for effective and efficient palliative and end-of-life care in the home.
7. Challenges to delivery of palliative and end of life care include increasingly complex care needs and the rising demand for care, especially care of those with multiple long-term conditions and their palliative and end-of-life care needs.

viii.            Palliative and end-of-life care, although prioritised by district and community nurses, can no longer be provided to the level required by patients or nurses, as insufficient workforce and limited resources now seriously constrain what can be achieved.

9. District and community nurses frequently provide the only ‘hands-on’ nursing service; this is often impossibly stretched with long waits for nursing care for those in crisis out-of-hours, contributing to unplanned emergency department attendances and hospital admissions.
10. By default, district and community nurses frequently coordinate complex care between patients, families, professionals and teams as part of palliative and end-of-life care provision. This ‘coordination’ aspect of their role is important, since it helps overcome fragmentation of care, but it is increasingly hard to achieve.

11. This inability to provide high-quality and efficient care impacts the morale of district and community nurses, with adverse effects on workforce health, and recruitment and retention. Skilled and experienced district and community nurses are being lost because of the extreme pressures in practice.
12. District and community nurses provide high-quality palliative and end-of-life care, but they need regular and effective training to develop and sustain the advanced skills and high level of experience and expertise needed.
13. Many of the advanced skills needed cannot easily be acquired by more junior nurses, as the opportunity to learn from experienced nurses (particularly through joint visits or apprenticeship style learning by observing) has been eroded by workforce pressures.
14. The skills and expertise needed to provide palliative and end of life care in the home extend beyond those required for ‘standard’ care. District and community nurses often work alone, with little or no immediate back up. The home settings can often be sub-optimal for end-of-life care too – for instance with insufficient heating, with clutter, or with lack of cleanliness.
15. There is a major and growing demand-capacity gap, reflecting the dissonance between the policy drive to move care out of hospital and challenges in providing community-based care.
16. Numbers of district and community nurses have not kept pace with demand, with high staff vacancy rates (2020 data show just over a third of district and community nursing shifts had the full allocation of nurses) and high staff-turnover in district nursing (15% in 2023).

xvii.            The district and community nursing workforce is caught in a cycle where workforce shortages exacerbate the demand-capacity gap, which in turn fuels other workforce challenges (staff wellbeing and morale, staff absence, diminishing attractiveness of the role). These challenges are multifaceted, impacting recruitment, retention, and the ability to provide high-quality palliative and end-of-life care.

18. Evidence relating specifically to the palliative and end-of-life care components within caseloads and impact on workload is limited.
19. Referral acceptance rates by district nurses onto their caseloads remain high at 97% but data also indicate a high proportion of district and community nursing services defer appointments most days (45% of days in 2023 and 60% of days in 2024). Palliative and end-of-life care referrals are often received too late (close to death), in response to crisis.
20. District and community nurses are one of the main providers of ‘hands on’ palliative and end-of-life care, alongside general practitioners, and are highly skilled in this provision. Their contribution within the multi-disciplinary team needs to be emphasised and valued, locally and nationally. To be effective and efficient, a balance of skill mix and clarity around the roles and remits of different professionals in palliative and end-of-life care is needed to ensure that care is not either left undone or duplicated.
21. There is a wide range of different models of community-based nursing care in place for those with palliative and end-of-life care needs; sometimes drawing on traditional models of care and sometimes using novel or integrated approaches (e.g. virtual wards; outreach from acute hospital teams; provision by specialist palliative care teams; and various combinations of these models).
22. However, while evidence suggests that integrated teams are effective, the evidence of effectiveness for specific new models of care is limited, and evidence of cost-effectiveness for these is almost completely lacking.

2.2.9  The evidence on ‘generalist’ palliative and end of life care provision (general practitioners):

Please note: the evidence in this section is from a recent report prepared for the Dept of Health and Social Care as part of our Policy Research Unit work; the full report can be provided on request. This work was a review of current evidence and expert consultation to better understand the contributions, roles, responsibilities and integration of district and community nurses in palliative and end-of-life care in

community settings. We include 232 sources of evidence (papers, reports, and other grey literature) in the report and have synthesised the evidence here.

1. If district and community nurses are to be effective in delivering palliative and end-of-life care, they need to work in close partnership with GPs.
2. The GP workforce has declined too, although proportionately less than the district nursing workforce. As of September 2024, there are 38,124 GP’s working in the NHS in England, equating to 27,966 full- time equivalents (1 GP per 2,062 people).
3. Between September 2015 and September 2024, GP equivalents fell by 1,399, despite the growing population and increased numbers of older people (and consequent increased need for palliative and end-of-life care).
4. Numbers of GPs have very recently started to increase again (2024) – with 663 added FTE GPs in the last 12 months, but there is some way to go to reach 2015 levels and reach a level commensurate with the growing population need.

v.            The pressures on GPs are much greater than these workforce numbers alone suggest, and this itself directly impacts on palliative and end of life care provision, and indirectly impacts district and community nursing work.

6. The Royal College of General Practitioners report ‘Fit for the Future 2023’ reports that general practices in England carried out 4.6 million (9%) more appointments in December 2022 and January 2023 than the same months the winter before the pandemic, and this trend continues; gaining GP time to support palliative and end-of-life care becomes ever harder.
7. The extreme pressures on GP workload impact their ability to provide palliative and end of life care, and also impacts their joint working with district and community nurses and consequently also affects the nurses’ ability to deliver timely and effective palliative and end-of-life care.
8. The level to which general practices use palliative care registers varies considerably, and the presence, regularity and quality of palliative care multidisciplinary meetings is also very patchy.
9. Nurses and GPs work in an integrated way – never more so than when managing care for people nearing end of life. For this integrated working to work, developing and sustaining professional working relationships is essential – but this takes time, meaningful interactions, and ideally the physical co-location of services, which are increasingly lacking.
10. Co-location has become harder, as numbers of nurses have reduced and requirements to cover larger geographical areas/multiple GP practices have increased.

2.3  Impact:

2.3.1  To what extent does the current framework provide support for carers and families of individuals receiving palliative and end of life care?

i.            In the Marie Curie 2024 report (https://www.mariecurie.org.uk/document/experiences-at-the-end- of-life-in-england-and-wales ) which reports on a nationally-representative survey of families following expected deaths of a family member, families described the hard physical and emotional work of caring for a person at the end of life, and many were completely unprepared for this responsibility.

ii.            Many families spent considerable time and resources caring for their relative. They reported important financial consequences of having to make time to care for the person who died in the last months of life of the person who died. Half of the respondents who were in paid employment had

their work impacted, by either taking paid or unpaid leave, changing their work hours, or stopping work.

iii.            There were mixed experiences of the extent to which healthcare professionals discussed the care of the person who died or provided sufficient help. Many families were unprepared for the difficulties in accessing and coordinating professional care and the extent of the caring responsibilities that

they needed to take on. The free text responses were often hard to read and reported complete lack of support, for example, “It was tough going as often, we were not sure if we were doing the right thing. We struggled to lift her, turn her, keep her clean and toileted. That’s why we were

desperate for carers to come and help – but there was a shortage of carers. So, we soldiered on, on our own, doing the best we could”. And “It is quite shocking that a 97-year-old man should have to carry the sole burden of a 90-year-old wife with Alzheimer’s. No care was available to [support] my father”.

iv.            Lack of communication about what was happening, and about where and when to get help, was a common source of frustration for families.

2.3.2  The impact of care towards end of life on families is huge:

i.            Informal carers (family or friends) play a major role in providing care for people at home in the last year of life. We undertook novel work to better quantify and understand the amount and

experience of care provided by family and friends (informal care) in the last year of life across England (see https://journals.sagepub.com/doi/10.1177/02692163241259649 )

ii.            Here, for the first time, we provide evidence at the population level that if care provided by family and friends had to be replaced by social and healthcare services, this would incur an estimated national replacement cost (for England only) of at least £28.7 billion each year.

iii.            We identify that longer care duration and intensity, older age of the carer, death at home (lived together), non-cancer cause of death of the person who died, and people experiencing greater deprivation, were all associated with increased costs.

iv.            Our findings present a major challenge for future care in England, as the pool of family and friends providing informal care diminish with an ageing population. Just under 1 in 10 family/friend carers said they would not be willing to provide care again in the future under similar circumstances (their experiences had been too difficult) - their experience needs to be improved to increase future willingness to care.

v.            Support current informal carers. The relationships between longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater and increased costs highlight situations where better recognition and provision of statutory support needs are required even if informal carers are available.

2.3.3  The homecare workforce – who support families with care - is currently in crisis:

i.            We undertook a review of evidence about the homecare workforce (see https://spcare.bmj.com/content/bmjspcare/14/e3/e2330.full.pdf)

ii.            This shows the homecare workforce currently experiences critical lack of emotional support and professional end-of-life care training, poor terms and conditions, isolated working practices with poorly delineated professional boundaries. Given these issues, the critically low recruitment and retention rate is unsurprising.

iii.            Social and health homecare provision needs to be sufficiently resourced, well supported and well trained, to enable timely, effective support for family and friends providing care now and grow

sufficient services for the future to pick up 'the care gap' which will widen - there is an estimated 25% increase in deaths by 2040.

2.3       Equality and equity – socioeconomic inequity

i.            In the Marie Curie ‘Mind the Gaps’ 2022 report

(https://www.mariecurie.org.uk/globalassets/media/documents/policy/beol-reports-2022/better- end-of-life-report-2022.pdf ), we found that out-of-hours emergency department attendance during the last year of life was higher among people living in the more deprived areas compared to people living in the less deprived areas. This consistent and marked social gradient was present across the UK. We also found that rates of emergency department attendance in the last year of life vary

widely across the UK. In England, the rates of emergency department attendance were highest in urban areas; for example, the five London Integrated Care System geographies were all in the top ten areas by rates of emergency department attendance.

3.  SHIFTING TO COMMUNITY

Please see Sections 1.1.2, 2.2.8 and 2.2.9 which address some of these questions.

4.  WORKFORCE, EDUCATION AND SKILLS

4.1  Resourcing:

4.1.1.  Key staffing gaps in the delivery of palliative and end of life care: in England, we provide too little specialist palliative care and too late for full benefit:

1. Our large synthesis of evidence

(https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1004436) shows that – in England – we provide too little specialist palliative care, and too late. The current common practice across England is for referrals to specialist palliative care to be too late for real benefit; currently, most referrals occur within weeks of death; our data seriously challenge this practice because the

evidence shows that specialist palliative care needs three months to maximal benefit (although there is certainly some benefit before then).

2. See https://journals.sagepub.com/doi/full/10.1177/0269216318781417 - a national study with 42,758 people who died, which showed the median time from referral to death across specialist palliative care services nationally was 48 days; cancer (53 days) and non-cancer (27 days).
3. Specialist palliative care picks up the most complex cases and often relieves the NHS including reducing unplanned admissions and bed-days; but its ability to do this is reducing markedly, as third sector providers experience major financial and workforce squeezes, and reduce the numbers and duration of those seen.

4.1.2   Key staffing gaps in the delivery of palliative and end of life care: the evidence on ‘generalist’ palliative and end of life care provision (district and community nursing):

1. Please see Sections 2.2.8 and 2.2.9 which address this question in detail.

4.1.3   Key staffing gaps in the delivery of palliative and end of life care: the evidence on ‘generalist’ palliative and end of life care provision (general practitioners):

1. Please see Sections 2.2.8 and 2.2.9 which address this question in detail.

4.1.4. Do current funding models support an effective palliative and end of life care workforce across sectors?

2. There is very little evidence on the ‘generalist’ workforce provision – see earlier sections for what evidence there is.

iii.            To some extent, both ‘generalist' and ‘specialist’ palliative care workforce need to be considered in tandem, since they often work collaboratively and fill gaps across each other’s limitations. This is particularly true of community settings.

4. Successful integration of ‘generalist' and ‘specialist’ palliative care workforce is likely to be most effective and efficient – this recent umbrella review of models, components, and outcomes of palliative and end-of-life care provided to adults living at home (see https://www.medrxiv.org/content/10.1101/2025.02.14.25322267v1) shows considerable benefits from integrated in home palliative care.
5. The size and characteristics of the hospital specialist palliative care workforce has never – to the best of our knowledge – been determined across England, yet they may play a critical role in timely (earlier) identification of those with palliative care needs - see Section 1.1.3 – v (a).
6. One of the major challenges to determine and deliver an effective palliative and end of life care workforce is that there is no ‘standard’ way to determine who need ‘generalist’ palliative care and who needs ‘specialist’ palliative care; if we had standard national criteria to address this, we may be able to utilise the limited resources for specialist palliative care in a more equitable, consistent and targeted way. We do have a casemix classification for specialist palliative care (see https://www.ncbi.nlm.nih.gov/books/NBK597740/) which classifies the level of complexity among the current population of those people receiving specialist palliative care; used judiciously, this could help inform such criteria.
7. This does not diminish the points made in Sections 1.1.1, 1.1.2 and 2.2.5, 2.2.6 which demonstrate how markedly under-resourced specialist palliative care is.

4.2  Effectiveness:

Please note: the evidence in this section is from a recent report prepared for the Dept of Health and Social Care as part of our Policy Research Unit work; the full report can be provided on request. This work was a review of current evidence and expert consultation to better understand the contributions, roles, responsibilities and integration of district and community nurses in palliative and end-of-life care in community settings. We included 232 sources of evidence (papers, reports, and other grey literature) in our review and have synthesised the evidence here.

4.2.1  The impact of staff wellbeing of palliative and end of life care delivery: ‘generalist’ palliative care by district and community nurses:

i.            A decline in the numbers of district and community nursing staff has been attributed to an ageing workforce, changing environment and evolving roles (amongst other factors), and has resulted in enduring challenges with replacing the workforce who have left, reduced their hours, or retired early.

ii.            In addition, a mass exodus of expertise is noted – experienced district nurses are leaving the profession and newly qualified staff are facing increased workloads with little support and no sign of improvement in workloads.

iii.            Other contributing factors to the shortfall in staff numbers and recruitment could be the inadequate numbers of training places and the decline in those seeking specialist practice qualifications.

Training places for district nurses have been dropping sharply, and the number of district nurses

qualified with a specialist practice qualification in the 2021/2022 academic year decreased by 6% from the previous year, and a further 9% decline has been observed in the 2022/2023 academic year.

iv.            Service managers are faced with restricted or reduced commissioning budgets due to wider financial pressures within the NHS, as well as challenges with cutting posts, recruitment freezes or vacancies left unfilled.

v.            Recruitment and retention issues demand a huge amount of time from team managers who already balance overburdened clinical work.

vi.            Staff often lack the time to reflect on and reform existing working practices to improve efficiency or the resources needed to support the promise of reducing the workload in both the medium and long-term.

vii.            Pressures on district and community nursing services risk moving away from a high quality model of care, and can have a profound impact on the wellbeing of nursing staff.

viii.            The limited time created by low staffing levels means that nursing staff often cannot obtain support from or debrief with other colleagues, and results in them feeling unsupported.

ix.            There is a vicious cycle of workforce shortages leading to unplanned staff absences due to caseload pressures and staff morale, which result in people leaving the profession and making the demand- capacity gap larger. In turn, it becomes harder to recruit and retain staff as community-based nursing becomes an unattractive prospect for new recruits.