On the first day of the 11th Palliative Care Congress in Glasgow, Scotland the Palliative Care Research Society supported a Masterclass on Transitions. The masterclass, conducted by Dr Pat Carragher, Chair of the Association of Paediatric Palliative Medicine and Medical Director of CHAS was around transitional care – an area that all of us need to know more about, regardless of where we work.
He discussed the changing palliative care needs of children and young people and how today, many more are living into ‘adulthood’ – so we all need to be prepared, whether working primarily in children’s or adult palliative care.
Gaps in transitional care
According to Dr Carragher we know that there are many gaps in transitional care and we need to come together to bridge these gaps. Whilst the gaps are beginning to be filled, there is more work to be done and we need to talk about palliative care and address the issue of transitioning care. There have been a variety of documents and pathways developed for transitions but we need to move on from the theory to the practice – we have been talking the talk, but have we been walking the walk?
The number of 16-19 year olds with life limiting and life threatening conditions has nearly doubled in the past 10 years. Thus whenever we are talking about the provision of palliative care we need to include arrangement for transition, being aware of the wishes, preferences beliefs and values of young people. Dr Carragher shares with us a video developed by KOSH – Talk about Change based on conversations with young people with life threatening conditions made in their hospices and in children’s hospices. It was important to hear the young people share what is important to them – what they need within the services.
Dr Carragher then went on to share the results of the recent ChiSP study undertaken to look at the numbers of children and young people in Scotland needing palliative care. The study found that in the 16 – 20 age group 25 per 10,000 young people needed palliative care and in the 20 – 25 year group, 20 per 10,000. Having identified the need they are now able to utilise this as an advocacy tool for the ongoing support and development of palliative care services for young adults, and ensuring that transitions between services occur smoothly. He then went on to discuss the 3 step concept of what matters to me – I.e. 1) what matters, 2) listening, 3) doing and he shared some examples of how this has been used.
There is much going on in Scotland at the moment and it was good to hear – however there is also a great need, and not just in Scotland. Presently much of the evidence is anecdotal which means there is a need for more robust research in this area. For an early morning workshop on the first day of the conference it was exciting to have over 100 people attend, and there was general agreement across services that we need to develop and improve our transitioning services.