Burdett supported study ‘Improving Transitions for Young People with Life Limiting Conditions in Scotland’

“For young adults with chronic life-limiting conditions, PPWH bridges the gap between health, wellbeing and social isolation… This new and evolving service is unique and a welcome opportunity for many of our young adults who want to live the best life possible with support in the confidence that PPWH can meet their personal needs with knowledge and understanding”. Marina Di Marco, Principal Neuromuscular Physiotherapist, West of Scotland

For the Young Adults (YA) attending the Prince & Princess of Wales Hospice, the conditions that they live with currently have no cure: however, the natural course of the disease, in some, can be altered by targeted intervention and advancing medical treatment and, with better standards of care, this results in them living longer with a life-limiting condition (LLC).

Following a successful grant bid to Burdett’s Small Grant Programme to support the development of a nurse- led transition clinic, YAs aged between 14-39, who are living with a LLC are invited to attend a structured holistic assessment transition clinic. The clinic is also supported by a speciality doctor, with its aims to identify the YA nursing medical, psychosocial and educational/vocational needs as they move from child-centred to adult-oriented healthcare. The frequency of attendance is approximately every 4-6 months, although the timeframe is determined by need. Prior to the pandemic the clinic was run within Day Services allowing a relaxed and informal setting for the YA and their families/carers.

The YA’s age range is: 17 – 42 years of age with a median age of 25. 75% have Muscular Dystrophy; 13% SMA; 6% have other Neuro-disabilities.

During the pandemic, the clinic swiftly adapted. Recognising that all the YAs were shielding, and understanding that this would increase their social isolation and potentially impacting on their mental health, the team moved to frequent telephone calls to “check in” with the participants and their families. The YAs also had the opportunity to join a closed Facebook Group – the Virtual Living Well Hub – where the focus is on relaxation, connection, taking notice, learning and being active.