There was a “huge variation” in services across the country, while the workforce spent too much of their time “battling the system” and worrying about long-term funding, the review commissioned by the department of health published yesterday found.
Families and children were often subjected to multiple assessments despite subsequently receiving no service, with many “falling into the gap” between health services and social care.
There was a lack of joint working in the planning, commissioning and delivery of palliative care and a “lack of understanding” of what it involved, with most professionals assuming it was just about end of life care, according to the review of stakeholders conducted between November 2006 and January this year.
Overall funding was not sufficient to provide a full range of services, with too many services reliant on short-term grants or voluntary provision, and existing money was not spent efficiently.
The review’s recommendations included the creation of a national strategy for children’s palliative care, clarification of accountability for planning and delivery of services, and “urgent” improvements in data collection.
Around 20,100 children and young people up to the age of 19 are likely to need access to palliative care services in England every year. Around two thirds of this number also need social care services, according to the latest department of health figures published alongside the review.
Palliative care statistics for children and young adults
Contact the author