Jamie Duckers, Darcie Williams and Zoe Morrison (CAVUHB), Torsten Hildebrant (CTMUHB) and Rhiannon Edwards (NHS Wales Executive)
Cardiff and Vale University Health Board, Cwm Taff University Health Board, and NHS Wales Executive
Rare diseases (RD), defined by a prevalence of less than 1 in 2000 people are individually rare, but collectively common, with over an estimated 200,000 people affected in Wales.
Many of these conditions are multisystemic, which causes challenges when children move from holistic paediatric services to condition specific specialties. Increasing opportunities for advanced therapeutics and research means more than ever children are living into adulthood and managing long term conditions. Transition into this environment presents challenges to young adults and their support network within primary and secondary care, education and social environments.
Patients and families often have complex care needs with significant impact on education, independent lifestyle, financial and social security, physical and mental health. The aim of the transition period is for the individual and family to adjust to a new care culture and their new identities, and, if possible, for the adolescent to take over responsibilities as an adult patient and to address medical, psychosocial, and educational needs.
The Rare Disease Implementation Network, over the last 24 months has been working on a vision of an online Rare Care centre. Using the approach developed by the all Wales Cystic Fibrosis service and supported by industry, we have been offered a platform to develop and evaluate this centre for 5 years. A broad and varied stakeholder group including academia, third sector, patient voice and clinicians are supportive of this proposal, and the project team are currently taking this IT solution through information governance processes in the three health boards in Southeast Wales. Working with four Rare Disease services that cover the south or all Wales, we intend to build a one point of access platform for resources and support for this group of patients and their support networks.
The Project Team
The first meeting of the Bevan Commission Exemplar Project team, looking at meaningful outputs and measures of progress in order to start our SMART objectives over the next 11 months.