New report: Families struggling to navigate complex system

A report published today highlights the daily battles faced by thousands of families of life-limited children and young people as they struggle to get the health, education and social care support they need.

The report, published by the charity Together for Short Lives, pulls together the findings from an innovative and exciting national listening tour of 42 events held across England, Scotland and Northern Ireland. These unique events - called 'Square Tables' to symbolise the equal weight and importance of all those who took part - were held throughout 2011 and culminated in a UK wide event in November.

More than 1,500 people took an active role in the discussion at these events - including families of children with life-limiting and life-threatening conditions, young people who have grown up using children's palliative care services, health, social care and education professionals and other representatives from across the community. They opened a privileged window of insight  into the lives of children and their families as well as an opportunity to understand the perspective of a wide range of professionals who support them.

Parents spoke powerfully about the considerable challenges of navigating the patchwork of services available to them, often being passed from pillar to post between health, education and social care services.

Barbara Gelb, Chief Executive of Together for Short Lives comments:

"There are some excellent and inspirational services out there, providing exceptional  support to  families. But we know too that  in many areas families experience of services is that they are  uncoordinated and disjointed. Life-limited children and young people have a lot of living to do and time with their families is precious - too precious to be taken up by navigation  through an often bewildering system to get the support they need. The Square Table programme has brought  the challenge of care co-ordination into sharp relief. We must now work  with government,  local health, education  and social care to ensure  better coordination of  services, so that families can make the most of every moment they have together".

Other themes which arose from these events included:

• Poor awareness - Low public and professional awareness of children's palliative care and the positive and lifelongsupport it brings is a serious barrier to children and families accessing the services available to them

• Availability of services for young adults - Parents are worried about the availability of services if and when their child reaches adulthood. Across the UK parents and professionals talked of the significant disjoint between children's palliative care services and adult palliative care services which tend to be more focused on end-of-life care.

• Sustainability of services - The sustainability of funding for children's palliative care services including children's hospices is fragile. Many providers say this leads to disruptions in service delivery, inadequate planning and uncertainty for families.

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