Charity urges improvements to palliative care for children

As well as improvements to the quality of palliative care services, Together for Short Lives wants to see more information and advice offered to families and increased funding for more effective commissioning of support.

Other changes called for in the charity's three-year improvement strategy includes a boost in volunteering and raising the profile of support for children’s palliative care among the general public.

In addition, transition from children’s to adults services also needs to improve, says the charity.

Chief executive Barbara Gelb says urgent change is needed to the poor quality of care and support for this vulnerable group of children and young people.

She said: “It’s shocking that, in 2015, so many families caring for children and young people with life-limiting conditions still struggle to get the care and support they need.

“Although there are many excellent services helping them, these families still face very real challenges in accessing round-the-clock care and support. Unless we change this, these challenges will only be exacerbated by further reductions in public spending and increasing numbers of children living longer with life-limiting conditions.”

She called on the new government to work with providers, palliative care professionals and charities in the sector to help implement its strategy.

She added: “We know that we can only deliver our ambitious strategy by working collaboratively with providers, professionals, national organisations and crucially, governments in all four UK nations, including the incoming Westminster government. Only by working together, will we achieve the co-ordinated, round-the-clock care and support that children and families need and deserve.”

The strategy includes setting up an enquiry to gather evidence of good practice and developing guides and information to help families and children’s services commissioners as well as the wider public better understand palliative care.

According to Together for Short Lives there are an estimated 49,000 children and young people in the UK with life-limiting or life-threatening conditions.