Grant to review complex care
EDGE Hill University has received funding from the National Institute for Health Research (NIHR) to review the provision of respite care for young adults with life-limiting conditions or complex needs.
The research team led by Sally Spencer, professor of clinical research in the university’s postgraduate medical institute, has received £168,554 to evaluate the provision of respite care services when the young person turns 18.
It is thought that more than 55,000 young adults live with life-limiting conditions and 100,000 live with disabling conditions in England.
However, due to improvements in medical care, the number of these young people has increased by almost 50 per cent in the last decade.
Young adults with these needs require high levels of complex care, normally provided by parents or carers with help from health and social care professionals.
Respite care provides relief for families and carers, helping to reduce stress and unplanned hospital admissions.
Before the age of 18, respite care and short breaks for carers are provided through children’s hospices and other specially-designed children’s services.
However, as these young people reach adulthood they are often no longer eligible to access children’s services and there are major geographical and service differences in the nature of respite care services provided for young adults.
Prof Spencer is working on the project with Prof Barbara Jack, Mary O’Brien and Brenda Roe and Dr Lucy Bray, Dr Katherine Knighting and Dr Michelle Maden from Edge Hill University.
Joining them are experts from Bangor and Lancaster Universities and the International Children’s Palliative Care Network.
Prof Spencer said: “An urgent need for a review of current evidence and policy has been identified by respite care providers and charities.
“Our funding, secured through a very competitive process, will evaluate what is currently known about respite care provision for this population to inform the development of future services and identify the need for new research.
“We will work closely with clinical colleagues, charity partners, an expert committee and a patient and public advisory group who have first-hand experience of the issue to gather and summarise research from across the world.”
This research will take 18 months to complete.
Prof Jo Rycroft Malone, programme director of the NIHR health services & delivery research (HS&DR) programme said: “I hope that this research will identify what is working well and where provision can be improved so that services can be developed to better suit the needs of this group.”