For our response, we took insight from Professor Richard Hain, Clinical Lead for the All-Wales Paediatric Palliative Care Network. We also drew on our State of Child Health report, and the response was approved by Dr David Tuthill, Officer for Wales
The purpose of this consultation was to seek views on the Draft National Framework for the Delivery of Bereavement Care in Wales for those involved and providing bereavement services.
Our response
We welcome the consultation and the framework being set out to support those who are facing, or have experienced, a bereavement in Wales and support the wider provision of home care for children with life limiting illnesses and access out of hours.
Our State of Child Health report tells us that many long term conditions develop during childhood. Our report for Wales included the following policy recommendation:
Welsh Government should implement recommendations from the Cross-Party Group on Hospices and Palliative Care 2018 Inquiry ‘Inequalities in access to hospice and palliative care’, which relate to paediatric palliative care services. Recommendations include access to out-of-hours services and increased resourcing of community nursing.
Our Children and Young People Engagement team have also been speaking (virtually) to children and young people across all four UK nations to understand the impact that COVID-19 has had on their lives in relation to their access to health services and support. Children and young people have highlighted bereavement services to us during the pandemic period and have said the following:
More support for children and young people about bereavement because of COVID-19
Have more support for families
They should put good information on the school social media on where to go for support
Our recommendations
- We felt there was a significant emphasis in the strategic context of the document on the bereavement impact of COVID-19. Although understandable, since the document was written during a time when COVID-19 was the main cause of death in Wales, we fed back that the emphasis risked obscuring the fact that outside pandemics the usual causes are much more diverse.
- The consultation sets out the need for clear pathways, it was suggested that it would be helpful to include an illustration in relation to this such as a flow chart.
- A number of references are also made in relation to the importance of the third sector providers of bereavement support. It would be useful for the document to indicate the government’s responsibility to develop an equitable means of including such services seamlessly in a national integrated approach.
- It was unclear how the distinct needs of children and young people are adequately acknowledged. The way adults die and are bereaved is different from children, and different again from young people. Furthermore, many of the factors that, among adults, make complex bereavement more likely are universally true of children and young people, such as difficulty in articulating feelings and restricted opportunity in practice to explore them.
- Emphasise more clearly that services suitable for adults are usually not equally suitable for children and /or young people, and that the lack of services to support the latter in Wales is even greater, and the need for expansion even more urgent, than for adults.
We respond to a wide range of consultations to ensure that the College’s position, and ultimately children’s health, is represented. Members in Wales can get involved in current consultations by contacting the Health Policy team: enquiries-wales@rcpch.ac.uk.