Agenda item - NHS Palliative Care Offer for People in Brighton & Hove

Report of the Chair, Health Overview & Scrutiny Committee (copy attached).

38.1    This item was presented by Lola Banjoko, NHS Sussex; Steve Bass,  Lead Nurse, Palliative and End of life Care, University Hospitals Sussex NHS Foundation Trust; Lisa O’Hara, Nurse Consultant, Palliative & End of Life Care, Sussex Community Foundation Trust; Lisa Barrott, Chief of Nursing Care, Southern Hospice Group; Tiritega Mawaka, Deputy Director, All-Age Continuing Care, NHS Sussex; and Helen Cobb, Senior Manager, Community Commissioning & Transformation, NHS Sussex.

38.2    Ms Banjoko outlined the local palliative care system, explaining how services link across acute, primary and community settings, including Martlets hospice, and how the system aims to identify people who may benefit from palliative support at an early a stage as possible, with the collective aim to ensure their end of life care is as good as possible.

38.3    Councillor O’Quinn welcomed the report and highlighted her support of the use of ReSPECT. In response to a question from Cllr O’Quinn on hospice care, Ms Banjoko and Ms Mawaka told the committee that the Integrated Care Board (ICB) works closely with Martlets to ensure that there is both bedded and homecare support available for people who do not necessarily have  specialist palliative care needs, as well as Martlets providing specialist care.

38.4    In answer to question from Cllr Wilkinson on integrated working, Mr Bass told the committee that a multidisciplinary approach is central to care delivered in the acute trust, with doctors, nurses and occupational therapists working seamlessly together, and also working very closely with ward services such as physiotherapy and dieticians. An NHS Sussex Palliative and End of Life Care Oversight Group brings all organisations and services together to share information and co-ordinate responses. Mr Bass and Ms O’Hara reiterated the multidisciplinary approach taken between the organisations delivering end of life care in the city. Lisa O’Hara added that Sussex Community NHS Foundation Trust (SCFT) and University Hospitals Sussex NHS Foundation Trust (UHSx) meet together fortnightly to plan how to improve services. This is in addition to weekly meetings with local hospices.

38.5    In response to a question from Cllr O’Quinn regarding the use of ReSPECT (Recommended Summary Plan for Emergency Care and Treatment), Ms O’Hara responded that the local system is recognised as a national leader in training of ReSPECT. This includes SCFT maintaining a permanent ReSPECT trainer post.

38.6    In answer to a question from Cllr Wilkinson on how palliative care is coordinated, Ms Banjoko replied that the system is looking to move to a model of integrated care teams (ICTs) working out of neighbourhood hubs. The embedding of PEoLC into ICTs  is currently being piloted in Crawley.

38.7    Cllr Cattell asked what lessons had been learnt from the experiences of Jo Harvey-Barringer, a local resident who recently presented to the HOSC on the care her partner received in the latter stages of her life. Mr Bass responded that system partners have reflected on Jo’s experiences and are looking at the liver disease pathway used in West Sussex as a possible model. This would potentially include having a palliative care presence in the hospital emergency department to ensure that people who have a need for palliative support, irrespective of diagnosis, are picked up as early as possible.

38.8    Cllr Mackey asked how services are evaluated. Ms Banjoko responded that there are a number of measures in place and that work is currently ongoing to standardise evaluation approaches across Sussex. Metrics measured include the percentage of people dying at home and the number of readmissions following discharge from hospital. Mr Bass added that there is also a focus on learning from complaints and on learning from independent reviews of deaths.

38.9    In response to a question from the Chair about carers experience, Ms Barrott told members that there was support available for carers, including from the Hospice at Home team and from district nurses. It may not always be feasible to support patients at home; services work with carers so they understand what can and cannot be delivered.

38.10  Geoffrey Bowden (Healthwatch) noted that it must be difficult to provide end of life care. Mr Bass agreed, telling the committee that training and learning are key: there is a need to train people across services, so they know how to support people at the end of their lives. It is also important to involve patient groups in the design of end of life pathways. Ms O’Hara added that work is underway to redesign the liver disease pathway following the recent HOSC focus on this issue.

38.11  Nora Mzaoui asked a question about support for people with specific cultural or religious needs. Ms O’Hara replied that services are focused on understanding the requirements of different faiths and cultures: training includes videos from a range of faith leaders explaining the requirements of their faith. Ms Banjoko highlighted that theICB commissions GPs to support patients in filling out ‘ReSPECT’ forms which can provide essential information on patients’ cultural and religious requirements. Ms O’Hara added that there is active recruitment onto focus groups of people from Black and Racially Minoritised communities with lived experience of palliative care.

38.12  In response to a question from Cllr Hill on LGBT+ training, Ms Barrott and Mr Bass told the committee that services seek to adopt a holistic approach to people’s care, with staff encouraged to be curious about what matters to each individual. Ms O’Hara added that sheworks closely with SCFT’s LGBT+ network to ensure that PEoLC approaches are fully inclusive.

38.13  In response to a question from Cllr Wilkinson on where data is collected and made available, Ms Banjoko told members this area was currently being explored, working with hospices and public health colleagues in the local authorities.

38.14  In response to a question from Cllr Wilkinson on accessing information about services Ms Banjoko explained we have developed a booklet with information about services available. Helen Cobb explained that this resource is available via each of the three “place-based” carers hubs.  Helen Cobb added that a new “Respecting Faith and Culture in End of Life Care” resource has been developed to support staff delivering end of life care, and this will be shared during ‘Dying Matters Awareness Week’, w/c 05 May 2025, in line with this year’s theme of ‘The Culture of Dying Maters’. Presenters confirmed that they would be happy to give the committee a further update as work on palliative care develops

38.15  RESOLVED – that the report be noted.