Children’s Hospices Across Scotland are working with local partners to put children and their families first

"Decisions are made collaboratively, in the best interest of child and family, ensuring clinical safety."

The Clinical Advisory Service (CAS) is a multidisciplinary forum offered by national charity, Children’s Hospices Across Scotland (CHAS), in collaboration with three Scottish Health Boards – NHS Ayrshire & Arran, NHS Greater Glasgow and Clyde and NHS Lothian.

The CAS provides specialist paediatric palliative care advice to clinicians across Scotland who are supporting dying children. The CAS primarily provides out of hours specialist advice allowing the care of the child to remain with the local team. Daytime support is provided to children by their local team as well as a range of partner services also with advice from the CAS.

Locally supported children are medically complex with multiple life limiting and chronic conditions across different diagnostic areas. Their care is challenging, requiring significant health and social care input. This places a huge care burden on their families, who are also complex, with backgrounds requiring multi-agency involvement. Many come from deprived communities, and ethnic minority backgrounds; populations who face barriers in accessing services and experience poorer health outcomes.

Scotland has a small number of consultants and associate specialists in paediatric palliative medicine, working across the NHS and CHAS, funded through a single approach. The CAS brings them together with:

• Specialist paediatric palliative care nurses
• The only specialist paediatric palliative pharmacist in Scotland, employed by CHAS
• Family support and spiritual care professionals
• Local teams caring for a dying child

Shared decision making sits at the heart of the CAS. Cases are discussed at a weekly multi-disciplinary, and with such complex children, there is rarely an obvious way to proceed. Decisions are made collaboratively, in the best interest of child and family, ensuring clinical safety.

Specialist advice combined with local knowledge ensures a community of some of the most vulnerable people in Scotland are offered the best possible care at the worst time of their lives.

Every week in Scotland, three children die from an incurable condition. Choice in place of death can support families in their immediate grief, and beyond, but this choice is not always available. Research^[1] shows most children with life limiting conditions die in hospital, with this likelihood increasing for children from deprived areas or ethnic minority backgrounds.

Year One of the CAS, an integrated service working with local teams:

• 77% of the 56 children supported died.
• 91% of children died in their preferred place, compared to 70% the previous year.
• Place of death changed from predominately hospital to an equitable mix of hospital, home and hospice.
• A 20% reduction in hospital deaths highlights choice, ensures appropriate use of hospital services and relieves pressure on teams.
• Increased advice for professionals supporting families living in deprivation (46%) and from ethnic minority backgrounds (25%).

The CAS is a direct partnership between CHAS and three NHS Health Boards and works closely with local teams. With medically complex children, requiring input from several specialties, carefully coordinated care is vital. Relationships with the Scottish Ambulance Service and Police Scotland ensure occurrence markers put in place to ensure these services know children are at end of life. The holistic element of the CAS works closely with both statutory and third sector family support services to ensure families receive the support they require.

The work has not come without its challenges however. Accessing national electronic data is difficult, as are shared IT systems and tensions can exist in complex decision making in paediatric end of life care. The CAS offers expertise and respectful challenge to ensure care is person- ed at this most difficult time.

One lesson they would share with other organisations working in the same way – relationships are complex, systems can present barriers so a clear governance framework with a clear purpose is essential, as is support from senior stakeholders who can enable change. Multidisciplinary working enables contribution from specialists across the country and ensures peer support and review in delivering high quality care.

Going forward they aim to further increase access to specialist paediatric palliative care advice, supporting clinicians wherever they are supporting children at end of life and to ensure that children and families voices continue to be heard and they have a choice in place of death.

[1] Place of death of children and young adults with a life-limiting condition in England: a retrospective cohort study: Gibson-Smith, D., Jarvis, S., Fraser, L.,

To learn more about Children’s Hospices Across Scotland (CHAS), visit their website.

You can read all Connected Communities case studies here: https://www.alliance-scotland.org.uk/blog/case_studies/?projects=connected-communities.