New research by Edge Hill University and its partners has found that young adults living with life-limiting conditions and complex healthcare needs often struggle to access sufficient respite care once they turn 18.
Respite care and short breaks provide opportunities for young adults to socialise and develop independence, whilst giving partners, parents and siblings a vital break from providing complex care and quality time together.
The review, funded by the National Institute for Health Research (NIHR), reveals how respite policy intentions are more comprehensively met for young people aged 18 and under, with families comparing the tailing off in respite services for over 18s to “like falling off a cliff”.
It is estimated that more than 55,000 young adults live with life-limiting conditions and 100,000 young people live with disabling conditions in England. Improvements in healthcare have meant that the number of young people with complex needs reaching adulthood has increased by almost 50 per cent in the last decade with figures rising annually.
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 respite care services provided for young adults with complex health-care needs.
Professor of Clinical Research and Director of Edge Hill’s Health Research Institute, Sally Spencer, co-led the review with Dr Katherine Knighting, Senior Research Fellow in the Medical School.
Dr Knighting said: “As more young people with complex conditions now survive into adulthood, the number of young adults in need of care continues to increase each year. These young adults have diverse needs which require high levels of complex care, normally provided by their parents or carers with support from health and social care professionals. Respite and short breaks are a vital part of the care needed for the young adults and their parents to support the health and well-being of the whole family. However, the biggest barrier to respite following the transition into adulthood is the lack of appropriate respite services and trained staff.”
Prof Spencer said “UK government policy has clear intentions on how to provide respite care, including early planning for transition. Respite care and short breaks are essential for young adults with complex health needs and their families. Unfortunately, the transition to adult services is often inadequate and young adults face significant barriers to accessing appropriate respite care.”
Edge Hill’s research team also included Professors Barbara Jack, Mary O’Brien, Brenda Roe, Lucy Bray and Gerlinde Pilkington. The team was joined by Professor Jane Noyes from Bangor University, Dr Michelle Maden from Liverpool University, Professor Ceu Mateus from Lancaster University and Julia Downing from the International Children’s Palliative Care Network.
The research team received £190,494 in funding from the NIHR and the review took 18 months to complete. The full report can be viewed online.
Since its launch in 2014, Edge Hill’s Health Research Institute has established a strong portfolio of multi-disciplinary research that extends beyond traditional medical approaches to reflect a broader view of healthcare. The institute aims to facilitate and enable collaborative research across a range of academic perspectives with external stakeholders in the NHS, social care, charities and other health-related organisations.