As I travelled up to London to attend this conference I reflected on the fact that this is the first time I have been to London for work since the start of the pandemic – I was excited to be seeing people face to face at last!
The conference, organised by the International Journal of Palliative Nursing (IJPN) and the British Journal of Hospital Medicine was chaired by Dr Brian Nyatanga, Consultant Editor for the IJPN and Senior lecturer at the University of Worcester. It was opened by Gillian Keegan, Minister of State for Care and Mental Health. In her pre-recorded presentation she acknowledged the importance of palliative care, the need to encourage people to talk about death and dying, and increasing public understanding of palliative care. She then set out some of the work being doing in the UK by the government and other agencies for palliative care, in particular with regards to advanced care planning. She also noted the importance of hearing about the international perspective and how we can learn from each other.
Following the opening keynote several presentations focused on issues around the Covid-19 pandemic. Prof Bridget Johnston started by discussing issues around end-of-life and bereavement. She discussed much of the evidence of bereavement during the pandemic, and the impact of the pandemic on so many of us, and the future implications for bereavement care. She also discussed the UK Bereavement commission which was launched in June 2021, chaired by the Bishop of London – they looked at people bereaved during the last 5 years – the commission was launched in June 2021 and the report is expected later this year. In Scotland they launched the Bereavement Charter for children and adults in Scotland in 2020 and Bridget went on to discuss the way forward for bereavement care in Scotland post the pandemic.
Claude Chidiac from The Homerton University Hospital NHS Foundation Trust discussed improving access to palliative care for ethnic minorities during the peak of COVID-19 pandemic. They conducted a service evaluation looking at care provision during covid-19 and comparing it to pre covid care and found the symptom burden was higher with a wider variation in symptoms. The implication of this included the importance of early referral to PC for ethnic minorities, particularly women and also the importance of referral to PC and the need for focused education on the dying phase. There was also an urgent need for research on access to PC for ethnic minorities, how PC services have changed and gender bias.
Dr Riya Patel from Coventry University then took us through issues of religion and spirituality, challenging us as to why we often neglect this area as the evidence demonstrates its importance and it is a key domain within palliative care. Having developed a Religious health interventions in behavioual sciences (RHIBS) taxonomy they undertook a study to look at whether religious practices within healthcare intervention be scientifically classified, whether the RHIBS taxonomy can achieve international, cross-disciplinary consensus and can it be reliably and easily used?
After coffee Dr. Simon Coulter spoke virtually about optimising the management of severe pain in cancer. He covered three areas – understanding cancer pain, managing cancer pain and what is the role of medications in the management of cancer pain. In particular, he looked at the use of hydromorphine. Interestingly he added a step 4 to the analgesic ladder – which was referral to the anaesthetic team for those needing interventions such as nerve blocks. and suggested that we should be considering this alongside the earlier steps in the ladder for refractory pain.
Charlotte Healey and Prof Matt Makin then discussed the challenges of delivering palliative care in the private/independent sector. What we all do is done through relationships, and it is essential to have access to palliative care across different sectors in the UK. Palliative care service provision through Supportive care UK is based on partnerships and relationships with a range of palliative care service providers across the UK. They are a community of senior consultants who offer expert guidance and advice in specific areas, one key area is that of out of hours support.
Keech hospice care provide children’s and adult hospice care and their CEO Liz Searle and Associate Director of Children’s Services Sonya O’Leary shared their experience of adjusting to a pandemic and looking forward with hope with regards to their children’s palliative care service. They currently support 352 children and their siblings and families and friends. They talked about the changing face of CPC with the prevalence increasing dramatically and shared some of the changes that occurred for service provision during the pandemic. They also undertook a service review which has played an important role in future planning including digital technology, multi setting working, care outside the hospice, allocation of care and training and development.
Dr Maurice Fernando then addressed the issue of improving symptom management in PC. He covered a range of issues including the use of the GSF Needs Based Coding, the use of the IPOS, the used of pre-emptive prescriptions, advanced care planning, the five priorities for care of the dying person and the ReSPECT document. He then shared some patient stories and how these can be used effectively. Moving on to care in the community Pedro Lino, a District Nurse from the Oakridge centre discussed the challenges and successes in transitioning end-of-life care from hospital to the community. In 2022 patients have the right to be cared for and die in settings where they want to – thus community care is important and its important to have good communication between services.
I then presented some perspectives from abroad, highlighting issues in Africa and around the world. Challenging participants as to why they should be involved in Global health, I then went on to discuss palliative care and the Global Health Agenda, sharing statistics about the need for and coverage of palliative care globally for both adults and children. Giving examples from the WHO conceptual model of palliative care development, addressing issues of empowering people and communities, policy, research, education, use of essential medicines and the provision of PC, giving examples from around the world and discussing the challenges, giving examples of different models of PC service delivery.
The day closed with an active panel of speakers discussing what the future of palliative care looks like – each speaker had different ideas but there were many overlapping themes including: the use of digital technology, seamless provision between children and adult services, nurse led services, and the need to think outside of the box. All in all it was a really good day, with much to think about, and it left me thinking hard about what does the future of palliative care look like?
I would like to say that my mum did not receive proper end of life care at all, she was left to die on a camp bed in her front room with no pain relief for over 2 hours, ooh nurses that were sent could not administer her pain releif as they said paperwork hadnt been signed off from consultant , and they were not trained to do it , Iwas absolutely disgusted with all aspects as how my mum passed