Agenda item

Purpose: To review the system approach to palliative care and hospice provision in West Berkshire.

Zoe Woods (Head of Palliative and End of Life Care (all age), Community Services and Section 117 (Berkshire West), Thames Valley Integrated Care Board (TV ICB)) presented the report on palliative care and hospice provision. The report provided assurance on the current system approach to end-of-life care; described progress to date and continuing areas for improvement; and set out the direction of travel towards a more integrated, community-focused model aligned to people’s preferences for place of care and death. It reported West Berkshire deaths (2023) and described the system’s expectation that a significant proportion of those approaching end of life would require specialist palliative care. It outlined recent service developments and partnership arrangements across the ICB, Berkshire Healthcare NHS Foundation Trust (BHFT) and Sue Ryder, including commissioning changes and expansions in community provision (including hospice at home), a 24/7 clinical advice line, virtual wards, rapid response, and inpatient bed capacity across local hospice and community hospital settings. It also identified ongoing challenges including coordination, digital infrastructure and consistent access/experience, and linked the work to wider strategic priorities (including a “Dying Well” approach across the Thames Valley).

During the debate the following points were discussed:

·         It was raised that the table on page 21 was labelled “Preferred Place of Death” and clarification was sought as it appeared to reflect where people died. Zoe Woods advised the data was sourced from ONS. It was subsequently clarified in discussion that the table on page 3 was actual deaths rather than preferred place of death, and that the meeting should distinguish between preference and actual place of death.

·         A question was asked about the reported figure that 56% of people would prefer to die at home, and whether this was a national figure or specific to the local area, as it did not appear to align with the table presented. Dr Jane Bywater explained that people do not always achieve their stated preferences due to service access, illness progression, unexpected events, and that preferences can change over time (often influenced by family support and carers’ capacity).

·         It was discussed that the key service question was the gap between what people say they want (e.g. dying at home) and what actually happens, and what “added value” the system can deliver. Dr Hannah Western (Palliative Care Consultant, Sue Ryder) noted that data can be difficult to interpret because it depends on when preferences are recorded; a preference expressed by the “well population” may change near end of life as care needs increase, symptoms become complex, or carers struggle. She also noted that changes in preference may reflect constraints in the level and responsiveness of home support, and that service developments aimed to make community provision more responsive across settings.

·         Concern was raised about national reporting (a Marie Curie report) describing end of life care as “broken”, with significant unmet need and out-of-hours gaps, especially in rural areas. It was also raised that a high proportion of deaths in West Berkshire occur in hospital compared with England, with implications for both patient choice and hospital bed pressures. Zoe Woods confirmed the system was aware of the report and described attendance at a national summit to understand implications. She set out that local work was at the start of a journey to improve integration and to enable more people to die where they wish, including investment in advance care planning via Respect and the Thames Valley Shared Care Record, and a focus on proactive early identification to reduce reactive hospital admissions.

·         It was discussed that a national Modern Service Framework for palliative and end of life care was expected in the autumn and would set expectations for ICBs. Zoe Woods stated that the ICB had identified “Dying Well” as a priority, with activity focused on proactive care, prevention of avoidable hospital admissions, and system-wide engagement.

·         It was discussed that cultural and societal factors affect end of life outcomes, including end of life being a taboo subject. Zoe Woods described work with patient participation groups to explore what “dying well” means locally. Dr Jane Bywater (Consultant in Palliative Medicine, ICB Palliative and End of life Clinical Lead, TV ICB) described work in Reading to develop a Dying Well charter and a webinar series, prompted by inappropriate pathway use (people nearing end of life being placed in reablement pathways). She described aspirations for a more “compassionate community” where end of life is talked about more openly, reducing isolation and improving support for families and carers.

·         It was raised that families and informal carers often provide a significant share of care at the end of life and may feel neglected and unsupported. Dr Jane Bywater referenced feedback from a focus group held by Newbury Cancer Care where relatives described themselves as part of the care “workforce” and noted the need for improved support for carers.

·         A question was asked about training and development for GPs and community nursing staff given their role in identification, referral and ongoing support. Obi Okongwu (Head of Service, Community Nursing and Specialist Services, BHFT) stated that end of life training was essential training for community nursing staff, and that a specialist palliative care nurse supports care homes. She also stated that training was provided alongside the roll-out of digital Respect to support GPs to have conversations and record patient wishes so they can be shared appropriately.

·         It was asked whether public debate about assisted dying was affecting patient trust or increasing anxiety and conversations. Zoe Woods stated that the NHS was awaiting Department of Health and Social Care policies and guidance before delivering further training or education on assisted dying. Dr Hannah Westernn stated that in her experience, conversations had not increased recently, despite expectations that they might.

·         It was discussed that Sue Ryder had enabled patients to share their views on assisted dying and had “channelled” that voice to ensure patients had the opportunity to contribute to discussions (within the limits of current policy position).

·         It was raised that workforce pressures were a national issue, including a stated community nursing turnover rate of 11.3% (reported as in line with NHS turnover) and expected future demand growth. It was welcomed that recruitment and retention were being prioritised. Obi Okongwu stated that work had reduced turnover from previously higher levels and addressed historical recruitment challenges in West Berkshire, including creating development pathways and opportunities (e.g. consultant nurse specialist for community nursing), providing robust induction, and supporting staff to develop specialist interests within a generalist community nursing field.

·         It was discussed how the Council could assist with recruitment and awareness of community nursing careers. Obi Okongwu invited Council support through career fairs and outreach in schools, colleges and universities. She noted a misconception that ward experience is required before community nursing, and described the distinct skills needed for community work (including working with patients in their own homes where the patient has greater control and there is less “white coat syndrome”).

·         It was raised that since the enhanced partnership arrangements and community model changes commenced in January, an update on delivery and impact would be valuable after a full year of implementation. It was suggested this could be brought back to scrutiny around March 2027. Officers and partners indicated agreement in principle.

·         It was discussed that some residents regard a care home as their home and may prefer to die there, and that end-of-life choices should reflect that reality (including care home as “ordinary residence” for some people).

·         A question was asked about what “hospice at home” entails and whether it is realistic for everyone, including equipment and home adaptation needs. Louise Lucio (Regional Director of Healthcare Operations – Sue Ryder South East, Sue Ryder) explained that the pathway includes community nurse specialist assessment and care planning, access to occupational therapy and physiotherapy, provision of equipment via community equipment services (including delivery, safe set-up and support for carers), and hospice at home provided by senior healthcare assistants (described as a specialist domiciliary care component). She stated the hospice at home service operates 8am-8pm, and overnight support is provided via partnership arrangements with other community services, supported by the 24/7 clinical advice line.

·         It was asked whether inpatient hospices were becoming “unfashionable” and how their role fits alongside the shift to home-based care. Zoe Woods stated there is a mix of NHS and independent hospice provision across the wider area, and that Berkshire West includes hospice-related inpatient capacity delivered through NHS providers with specialist hospice elements. Louise Lucio and Dr Hannah Western confirmed that inpatient hospice beds remain an essential part of the pathway for patient choice and for complex symptom control (including complex pain and medication management), and for step-down from hospital to hospice and onward to community where appropriate. They stated that inpatient hospice care is more expensive due to the 24/7 model, but that cost does not determine access where hospice care is clinically appropriate or chosen.

·         It was discussed that some younger patients may choose hospice rather than dying at home to avoid the family home becoming the place associated with death, particularly where children are involved.

·         A question was asked about the status and need for a proposed 20-bed hospice development in the Sandleford / Newbury area (planning permission previously granted as part of a wider development). Zoe Woods stated the ICB had reviewed the proposal; questioned whether a 20-bed inpatient hospice was needed given existing bed capacity (described as 18 beds across Berkshire West) and the strategic direction towards supporting more people to die at home; and indicated that from the ICB perspective the proposal had been rejected, although she was not able to provide complete confirmation of the current “live” planning/development status beyond that.

·         A question was asked about the direction of travel (more people wanting to die at home) and whether capacity would be sufficient. Zoe Woods stated projected need would increase and that the ICB’s “Dying Well” priority includes work on access and capacity across hospice provision, community nursing, primary care, social care, and ambulance services, aligning with wider system planning and recovery priorities.

·         It was discussed that dementia prevalence is expected to rise and that dementia end of life care presents particular challenges (including uncertainty about timing and when to initiate end of life planning). Dr Hannah Western stated that specialist palliative symptom needs in dementia are not always the most complex aspect, but overall care needs are complex and multi-provider, requiring strengthened system integration. Dr Jane Bywater stated that work on frailty provides an opportunity to identify people likely to be in the last year of life (advanced frailty), which would capture many people with advanced dementia and enable earlier conversations and planning. Obi Okongwu stated that community teams would support dementia patients as complex cases, using multidisciplinary approaches, and involving family conversations and wider Voluntary, Community and Social Enterprise (VCSE) partner support where needed.

·         It was discussed that earlier identification and advance care planning is a priority, particularly to capture wishes while capacity allows. Zoe Woods stated this underpinned investment in Respect as the preferred approach for documenting “what matters” to individuals earlier.

·         A question was raised about Sue Ryder funding sustainability, noting that a substantial proportion of funding is raised through charitable sources. Louise Lucio stated that Sue Ryder had entered into a new seven-year contract (with possible extension to ten years) providing greater stability for planning and service development. She stated that approximately 43% of funding is received from the ICB and the remainder is supported through charitable fundraising and other income streams (including retail, fundraisers, sponsorships, grants, and continuing healthcare funding for hospice at home). She also stated that the charity is contributing to national work to influence sustainable funding through the modern service framework, and that service demand was increasing (citing a 2.5% year-on-year increase in the number of Newbury patients requiring specialist care over three years). Zoe Woods stated that the ICB recognised national variation in hospice commissioning and funding and that this remained a commissioning priority as part of the “Dying Well” agenda.

·         It was discussed that further scrutiny could include a future item on children and young people’s palliative care, and collaborative work to support wider community conversation about end of life and “dying well”, including potential Council actions to support such a shift.

Action: Vicky Phoenix to add an item to the committee work programme for partners to return with an update in March 2027.