The Paediatric Palliative Care Needs Assessment in North East London, led by Haven House and Richard House Children's Hospices and NHS North East London, has demonstrated a better understanding of the needs of babies, children and young people with life-limiting and life-threatening illnesses.

The report has revealed that in North East London there are currently 3,343 children and young people needing access to palliative care services, and this is increasing year on year.

By exploring the current experiences of families receiving care, and professionals involved in services assessing and providing palliative and end of life care, the service review evaluated the effectiveness of provision and identified key gaps.

The assessment identified that:

• The frequency of life-limiting conditions is highest amongst the most deprived groups of the population in London and the prevalence rates differ between ethnic groups
• The largest proportion of children (aged 0-19) who die of complex healthcare conditions are aged under one
• There seems to be little specialist provision for the rising number of young adults that transition to adult care.

More widely, there also appears to be some misconceptions associated with palliative care and specifically around hospices. In addition to these more conceptual barriers, there are also some physical or more tangible barriers preventing families from accessing palliative care (including language barriers, lack of resources/transportation etc.) and even when families have been keen to access services, many have found the referrals process difficult and confusing to navigate with some parents describing a ‘fight’ to get the help and support they need.

Dad Will Cooke, whose four-year-old son Dylan was supported by Haven House, has welcomed the research. Dylan had an extremely rare condition called Sandhoff disease. There is no cure for this condition and some 90% of Sandhoff sufferers pass away before the age of three.

Will said:

"While we've been dealt the unluckiest of hands, we feel incredibly lucky to have been empowered by a collaborative team, and lucky to have had the support to manage things at home, even at the most helpless and hopeless of times.

"Like many families we were left bewildered and burnt out by the complexity of the systems we were trying to navigate. We were emotionally and physically exhausted by the constant fight for services, funding, appointments and even prescriptions for medication. So, to have built an integrated and trusted team with Haven House, Community Children’s Nursing and Great Ormond Street palliative care team, has made the world of difference.

"We hope this research and initiative will help design and define more collaborative approaches that will help other families in the future."

Work has already started to implement the recommendations. Among these are a:

• Need for an awareness campaign to raise the profile of children’s palliative care, reaching out to the richly diverse communities we serve and strengthening connections across all of our services
• Need for a shared education programme to educate professionals
• Need to address pathway issues, such as embedding single points of contact, increasing neonatal referrals and enhancing the transition into adult services.

Eileen White, Director of Care at Haven House, said: "This collaborative review is such a rich and important piece of work that highlights the need for joined up, coordinated and family-centred care. Our focus is always the child and their family, and this insight work will enable us to strengthen the services we offer to our community, enabling choice and consistent high quality care where and when it is needed.”

We will continue to have discussions with children, families and professionals on what more we can take forward together, to ensure the best possible experience and care for all children and young people with palliative care needs in North East London.

Read the full report here