Key themes for the day, many of which were identified at an event last year on the implications for the Commission into the Future of Hospice Care, included: the changing landscape, the evidence base for children’s palliative care, ethics, community engagement, measuring the impact of children’s palliative care and collaboration.
Children’s palliative care and public health
The day was chaired by Dr Hilary Cass, a Consultant in Paediatric Disability at Guy’s and St Thomas’ NHS Foundation Trust. She skilfully took us through the day, ensuring that the speakers had their say, participants were able to ask questions, and when the fire alarm went off that we were all safely evacuated form the building! Following a welcome by Robin Knowles, Chair of Together for Short Lives, who challenged us as to ‘What change are we going to make?’, Professor Allan Kellehear (Professor of Community Health, Middlesex University) started the day by addressing public health approaches to end of life care, in particular looking at the importance of community participation. In putting palliative care into the public health concept, he stressed the importance of working with the community, whoever our ‘community’ might be – central to this is building trust, co-operation and empathy.
The changing population of children’s palliative care
Having discussed palliative care and public health, Dr Lorna Fraser (University of York) discussed some of the work that she and her team have been doing to look at the changing population in children’s palliative care. She shared some of the data that they have in terms of trends for disease, mortality, age etc, looking at some of the associated factors such as gender, ethnicity, education levels etc. The trends clearly show the need for non-oncology palliative care and identify the nee for specialist palliative care services for young adults – the age of transition between children and adults service is a key one for provision of care. Following on from looking at the data, Prof. Myra Bluebond-Langner (Professor and True Colours Chair in Palliative Care for Children and Young People at University College London) explored why research matters, and why we need an evidence base to guide service development and delivery. Having emphasised the need for research, she then discussed 4 different models for conducting research within the field, advocating for a partnership model between service provides and university based research teams, citing recent examples of fruitful research partnerships in the room.
Panel discussion on ethics
Ethical issues are always important within children’s palliative care, and a panel discussion was held to address issues of the ethics of health and social care rationing. Prior to the conference, participants had been invited to submit questions to the panel, four of which were discussed. These questions ranged from whether we have a 2 or 3 tiered service, with a gold standard service being provided for a few, through to how do we utilise limited resources with the best outcome for the most children – holding central what is in the best interests of the child and their family. Discussion was at times heated and participants from the audience, including many family members who were present, contributed to the discussions. Commissioning is a hot topic at the moment, thus after lunch, Dame Barbara Munroe (St Christopher’s Group) addressed key commissioning themes and the challenges of delivering good care to children and young people. She challenged us to work together, to collaborate and to move forward together to develop quality children’s palliative care services. She also noted that we have traditionally been reactive in engaging stakeholders e.g. parents and MPs, but we should be proactive.
Following the plenary presentations, four workshops were held addressing different key themes. The workshops were run twice so participants had the opportunity to attend two of them. Community engagement was a key theme in the workshop on models for children’s palliative care provision, noting that we can learn from the adult palliative care sector in this area, although often the ‘community’ served by a children’s palliative care service is much larger, so we need to think about how we can do this as children’s services. The future of volunteering in children’s palliative care looks good, but we need to continue to harness and develop volunteers – the workshop was interactive and participants found it empowering. We need to be looking at the impact of children’s palliative care – are we making a difference. This workshop bought impact analysis alive, and there was enthusiasm from participants for a sector wide impact framework – we were also encouraged to slay the myths of impact analysis and concentrate on what difference we are making, Finally the workshop on partnership and collaboration was a forum where examples were shared of when partnerships and mergers had been successful and when they had been challenging – key successors included having leadership, identified key individuals and good communication.
The day conference, attended by 200 participants, including families, volunteers, clinicians, managers and researchers, was thought provoking. It was a great opportunity for networking as well as for discussing some of the current pertinent issues in children’s palliative care in the UK. We were all challenged as to how we were going to utilise what we had learnt throughout the day and were reminded that palliative care is everyone’s business!