Developing your Healthcare Transition Pathway to Adult Services

Cillian has had a varied career in healthcare spanning 15 years, working in Ireland, Australia and the United Kingdom. He is a qualified cardiac and respiratory intensive care nurse and is currently working towards his masters in cardiac nursing. Cillian currently works as the lead Cardiac Adolescent and Transition Clinical Nurse Specialist at Great Ormond Street Hospital. This role involves working with adolescents with congenital heart disease and preparing them for transferring to adult care, teaching them the importance of long term follow-up and a multitude of self-management skills. Cillian has personal knowledge of this subject also, as he is a lifelong patient, born with congenital heart disease himself, he draws upon his own experiences of transitioning from paediatric to adult care to try improve transition for all the patients in his care.

Alison is a GP by background and a clinical co-ordinator with NCEPOD, and recent studies include ‘The Inbetweeners’ looking at healthcare transition and ‘Consolidation Required’ investigating the management of community acquired pneumonia. She is now a co-lead on a study looking at the management of acute illness in people with a learning disability.

She also co-leads the South West Learning Disability Collaborative. The SWLDC is a network of clinicians, carers, families, and experts by experience who are working together with academics and policy makers to improve outcomes for people with a learning disability. 

Underpinning these roles is Alison’s work as a primary care clinical lead at Health Innovation West of England. She has a special interest in the prompt identification and management of the deteriorating patient and particularly the use of NEWS2 as a common language across the NHS and its use in out of hospital settings. As part of this she was seconded to NHSE for over 3 years as a regional clinical lead to support the COVID response and the development of virtual wards.

I have worked proudly in the NHS for 39 years, initially within adult acute services but soon recognised that my passion was to work with children and young people, so transferred to an acute role as a cardiac nurse in Birmingham Childrens Hospital, it was here I converted to do my RGN & RSCN.

I moved to the community setting in 2004 with Birmingham Community Health Care Trust and became a community children’s nurse which then led to my current role as transition to adulthood team lead, I have always enjoyed working with young people with complex medical needs and learning disabilities, so consider myself very lucky to be able to end my career doing something I feel very passionate about.

Claire has been with Demelza for 2 years coming up this November. She has never previously worked in care or with young people with PMLD, her background is 22 years in the civil service working with Child Maintenance and for the Job Centre working with universal credit and benefits. 

Within the job centre she worked with the hardest to help cohort of people, initially those with challenging social issues such as drug or alcohol abuse, homelessness and criminal convictions. She then focussed this experience on working with the youth sector in this same demographic. She quickly realised she could do so much more to help and sadly the restrictions of the DWP prevented her from being able do much to support these vulnerable people. 

Putting together the Transition Pathway and standard offer of events and support for the Demelza families has meant that she can have the flexibility and autonomy to give families what they need as well as give them practical help and support with benefits, EHCP's and the minefield that is transition.

Paula Marten is Assistant Headteacher at Chailey Heritage Foundation, a school for children and young people with complex neurodisabilities. She has worked in post-16 Special Education for 29 years. At Chailey, she leads on Transition to Adult Services. Paula has led the development of services to support young people and their families through the NHS Continuing Care/Continuing Healthcare assessment process. She has raised the profile of Transition to Adult services, speaking at All Party Parliamentary Groups, contributing to the 2022 Government report on Transition to Adulthood, writing articles for national publications and working with schools and parent/carer forums in the Southeast. 

Paula also delivers Relation and Sex Education training for teachers, carers and parents across the UK. At the core of this, is the belief in the right of young people to be enabled to make choices, enjoy meaningful connections with others and keep themselves safe –no matter how severe their disabilities.