Agenda item

(indicative timing: 11am – 11:45am)

The Chairman acknowledged the additional data which had been requested and the representatives present apologised for its lateness. (attached to Minutes)

Dr Sarah Onions, End of Life Care Clinical Lead for Herefordshire and Worcestershire Clinical Commissioning Group (HWCCG) and St Richard’s Hospice Medical Quality Lead and Hospice Palliative Care Doctor, introduced the report which provided an update since the last discussion with the Committee in 2020.

Over the last two years the national End of Life Care team had become very proactive and there was very strong working between NHS England and Improvement (NHSE&I) and HWCCG, with priorities now aligned. A new self-assessment framework was proving very helpful for the CCG to verify services and feedback from NHSE&I for Herefordshire and Worcestershire (H&W) was complimentary with the area often seen as an exemplar. Many priorities were already in the Strategy for H&W, for example integrated working and a 24/7 advice provision to professionals but also to patients and families. 

An external view of services had been commissioned as well as forecasts of future trends in population and areas of development. Funds had also been secured from NHSE&I to help with integrated access and inequities.

Caitlyn Adkins, Ageing Well and End of Life Care Project Manager referred to work behind other priorities, for example the digitalisation of ReSPECT forms which would be accessible to any health professional and the new ReSPECT training programme which was being taken on as a national resource. Developments in education and knowledge had in many ways been brought forward by necessity due to COVID.

The Chairman invited discussion and the following main pints were made:

·         A HOSC member asked for an example of a patient journey through end of life care, and Dr Claire Curtis, Consultant in Palliative Medicine and Clinical Director for Specialist Palliative Care Services with Herefordshire and Worcestershire Health and Care Trust (HWHCT) spoke about care provided recently for a young woman in her 20s with metastatic bowel cancer who had in the main been cared for at home, under her GP and community care home, with hospital visits minimised which was her preference. Her wish was to die at St Richard’s Hospice, with the team she knew and who were helping her to prepare, for example by completing a book for her son.

·         Feedback was important and was therefore sought from as many sources as possible, for example hospices and bereavement questionnaires from community hospitals, and the different agencies involved had different mechanisms to ensure this was acted on, for example reporting to the organisation’s Board and sharing across the learning network.

·         Regarding options for end of life care, conversations would be started early on with the individual and family and would continue since needs and wishes may change.

·         In response to a question about how long community hospitals had sought feedback from relatives, this would be verified.

·         Worcestershire Acute Hospitals Trust had pathways to facilitate safe and quick discharge for patients who entered hospital not envisaging they would need end of life care unless a patient became too ill to be moved on the day. Options for those who did not want to die in an acute setting included a care home, home with care, community hospitals, and hospices.

·         A HOSC member had heard of previous problems where the practical needs of family members had not been taken into account before allowing a patient to return home and was therefore pleased to learn that this was no longer happening. It was also explained that there were regular audits which included checking when early conversations had taken place, which were followed up with clinicians if needed.

·         A HOSC member reported that he was aware of individuals who had not been offered bereavement counselling, and the representatives stressed that hospitals tried to highlight that bereavement care was available, including from hospices, irrespective of whether the family member had been cared for there.

·         When asked what had been working well and less well with ReSPECT, HOSC members were advised that the paper document had been fantastically embraced by the network and care system and the form was regularly audited to ensure it was being used in the way it was intended, and future work was carried out with a co-productive approach.  The current ReSPECT document was intended as a summary therefore the digital work planned would enable some of the softer preferences to be captured which may have been lost, such as religion or a person’s favourite foods.

·         It was explained that the projected rise in the number of deaths (set out in the additional information circulated) was expected due to national population increases and the increasing ageing population in Worcestershire, in particular aged 80 plus.

·         When asked about any areas which may need more emphasis, the Ageing Well and End of Life Care Project Manager highlighted a lack of good language, which people needed to be reminded about.

·         HOSC members were really pleased about the improvements which would be brought by digitalisation of ReSPECT information, since it was so important to be able to respect people’s last wishes.

·         Clarification was sought as to why only 4% of registered patients over the age of 65 had a ReSPECT form in place, compared with 56% of all people on the palliative care register and it was explained that the figures for those on the palliative care register (with a form in place) had increased as the process of adding someone to the register often prompted the conversation. It was hoped that greater public awareness would prompt more individuals to register their wishes, although this was entirely voluntary and many healthy people did not do so since it was not a concern; key touchpoints such as diagnosis of a life limiting diagnosis or increasing frailty, were therefore important.

·         Regarding dementia, it was clarified that the figures for patients with a ReSPECT form in place would only include those with dementia who were recognised as being at the end of life stage.

·         The Consultant in Palliative Medicine explained that her role involved working alongside GPs in an advisory capacity, which was important support for GPs – her role was predominantly community based, although most community consultants’ work included a mix, and in total there were 7 Palliative Consultants in Worcestershire.

·         It was clarified that the Primrose Unit was an NHS specialist palliative care unit within the Health and Care Trust, whereas the Primrose Hospice in Bromsgrove provided day hospice care.

·         A member sought views about the Liverpool Care Pathway, a previous national pathway, the representatives explained that it had been phased out, however acknowledged that when used well it had contained some great elements and had been misunderstood.

·         A member asked about arrangements for timely sign-off of death certificates, which was particularly crucial for Jewish and Muslim families, whose deceased needed to be buried within 24 hours. and the frequency of GPs needing to do so to avoid difficult circumstances for families, and was advised that rules had changed during and after the pandemic, and a GP could sign either if they had seen the patient within 28 days in person or virtually, or if they have seen the person after their death

The Chairman thanked those present for the information provided and requested a further update in 12 months’ time.