We were delighted to be asked to present at the 31st Annual meeting of the European Academy of Childhood Disability (EACD) in Paris between 23rd and 25th May. The conference was aimed at researchers, medical professionals and other stakeholders and provided a forum for the sharing of new research and service innovations in treatment and healthcare.
Adult Cerebral Palsy Hub presented as part of a symposium titled, “Ageing with Cerebral Palsy: Age trajectories of musculoskeletal, cardio-metabolic and psychological morbidities.” This session aimed to highlight the need for a lifespan approach to preserve function and health among people with Cerebral Palsy.
We attracted a great deal of interest from clinicians, researchers and representatives from international charities promoting the needs of Adults with Cerebral Palsy, with standing room only.
Dr Jennifer Ryan from the Royal College of Surgeons in Ireland presented findings from recent studies conducted in the UK and the US. Despite the well-established interrelationships between cardio-metabolic diseases, cognitive dysfunction, and depression in the non-Cerebral Palsy older adult population, the extent of psychological morbidity among adults with Cerebral Palsy has received little attention.
Dr Adam Shortland from Kings College Hospital, London, presented findings from recent studies, which explore changes in muscle and bone structure with age. A cycle of decline in muscle strength, immobility, and inactivity is known to exist among adults with Cerebral Palsy, and age trajectories of multimorbidity.
Emma Livingstone, Adult Cerebral palsy Hub, presented the experience of ageing with Cerebral Palsy from the perspective of a person with Cerebral Palsy. Emma took us through her life story. She discussed having physiotherapy until age 16 when she was discharged from paediatric services with the expectation that she would not need further medical interventions. Emma discussed her professional development as a speech and language therapist, NHS manager and university lecturer as well as raising a young family. She outlined how she had to give up her work due to severe and disabling mobility problems and having to find surgeons who were could competently operate on both her hips over a period of 3 and half years. She talked through the medical, therapeutic and nursing care challenges she experienced in an orthopaedic service as a patient who also had an underlying neurological condition, following through to discharge and rehabilitation. Emma played the film put together by members of the Cerebral Palsy community to the room and finished explaining the role of Adult Cerebral Palsy Hub as a charity with our aims, objectives and vision.
The conference provided us with the opportunity to network and discuss the issues associated with ageing and Cerebral Palsy with influential medics and researchers across the international community. Many of whom have committed to supporting and helping us with our vision to develop better services and understanding for adults with Cerebral Palsy in the UK. These connections will also ensure that we are able to continue to influence the global research agenda to gain better understanding of Cerebral Palsy.