Research finds end of life care for children in the North West is a 'postcode lottery'

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18th May 2021 13:00 - Health

Research reveals end of life care for children in the North West is a 'postcode lottery': A piece of research conducted by this company (DJS Research) has revealed that end of life care for children living in the North West of England is a 'postcode lottery'.

DJS Research was commissioned to undertake a needs assessment for Derian House Children’s Hospice in December 2020, as the charity wanted to ensure it was meeting the needs of children, young people and families living with a life-limiting condition across the North West of England.

The research, which involved conversations with 100 families as well as Clinical Commissioning Groups (CCGs) and freedom of information requests, found that round-the-clock end of life care was particularly limited in the North West, with Derian House regularly stepping in to help families who found themselves without support.

The study found that for young people who reach the 26-year old cut off point for available support there were gaps in a number areas, including specialist palliative knowledge and training, cultural link workers, emotional wellbeing support and transition services.

Also revealed by the research was that the spend in provision amongst the 20 North West CGCs contacted varied greatly, ranging from those who had solid, reliable services in place to support families, whilst others could offer none at all.

Services offered by Derian House

Looking at the services offered by Derian House, the survey found that 62% said that having planned overnight respite was the most valued, allowing families time to experience other activities or even to just catch up on much-needed sleep. Wellbeing services were also cited as highly valuable, with two-fifths (42%) stating that the use of the hydrotherapy pool was important.

When asked about the four key areas that are most beneficial to them as a family, respondents highlighted respite, emotional support, therapeutic support, and healthcare, including symptom support and liaising with hospitals.

David Robinson, Chief Executive of Derian House Children’s Hospice, said of the findings: “While the findings of our research are stark, they are not shocking to us because we’ve been filling the gaps in children’s palliative and end of life care for a long time."

“It costs £5 million to run our services every year and yet currently only 12% of this comes from government funding. The care of seriously ill children in our community is being paid for by bake sales and sponsored walks, which is simply not right," he said.

Find out more and see the research in full: derianhouse.co.uk/research



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