Pat Carragher: Palliative care needed more than ever

CHAS Rachel House hospice. Picture: Contributed

Scotland is recognised as providing world-leading palliative care. Children’s Hospice Association Scotland (CHAS), as the only hospice service in Scotland for babies, children and young people, is committed to providing the best standard of care to those who need it.

The need for holistic palliative care for under-25s, that supports their health, social and emotional needs, was strengthened earlier this month when health secretary Shona Robison launched the findings from the Children in Scotland requiring Palliative Care report (ChiSP).

The study was undertaken by the University of York on behalf of the Managed Service Network for Children and Young People with Cancer and CHAS, and gives vital figures on the number of babies, children and young people in Scotland with palliative care needs, and also their needs and those of their families.

It is the first time such an in-depth research project of this nature has been carried out in Scotland and the results are fundamental in helping to ensure every affected family across the country has access to care as and when it is needed. The report shows that in 2013-14 there were 6,661 under-25s with a life-shortening condition, compared with 4,334 in 2003-4. The increase is due to a number of factors including advances in medicine, with many children now living longer than previously expected.

The study also highlights the need for improved awareness, access to and availability of palliative care services for under-25’s. Our experiences and those gathered from our integrated working with the NHS, local authorities and other health and social care providers have indicated that more needs to be done to reach a growing number of families whose children may benefit from more accessible palliative and end of life care.

The report also provides a picture of the needs of the under-25s, where they live, their ages and underlying conditions and the frequency of their hospital admissions. It also details their daily care and support needs, as well as their families’, who face the most challenging of times. The care we offer must be holistic, supporting their social, emotional and other needs, as well as being easily accessible.

It is important to stress the term “we” does not just refer to CHAS. Our service is not necessarily appropriate for every young adult referred and many may not want to be supported by CHAS. However, Scotland’s end-of-life and palliative care impacts on and must be supported by many sectors of society. NHS health boards, local authorities, as well as communities, all have a role to play to ensure youngsters who need palliative can access it when and where they need it.

The report highlights how we can further improve specialised care, with ten recommendations, including outreach to families living in areas of deprivation, inclusion of all ethnic groups through ensuring services are culturally sensitive on a case by case basis, and the development of services for 16 to 25-year-olds. Notably, the highest prevalence is in the under-ones and it is recommended that this should be a priority group.

CHAS is already providing specialist care in many of the areas the ChiSP report highlights, with dedicated nurses and doctors working alongside NHS staff to provide clinical leadership and support for babies, children and young people with palliative care needs. CHAS also has a team that supports the over-18s as they prepare to move onto age appropriate services.

However, publication of the report on 4 November is just the beginning. We at CHAS welcome the findings. At a time when the Scottish Government is preparing to publish their framework for action on palliative and end of life care, this research provides a helpful insight into where resources are needed.

We hope the findings will further fuel the debate on care in Scotland and shine a light on children’s palliative care in particular. I know the difference specialist palliative care can make to families who are facing the most challenging of times. This report helps us to identify how care may be offered to families where and when they need it.

• Dr Pat Carragherm is medical director to Children’s Hospice Association Scotland (CHAS)