1000 The next step- northern ireland cerebral palsy transition

Abstract

<h3>Aims</h3> Cerebral palsy is the commonest cause of physical disability in children. There are approximately 60 children diagnosed with cerebral palsy each year in Northern Ireland.¹ Children with complex needs will encounter many healthcare professionals throughout their life and there has been much interest in healthcare use and how to improve transition services for these children2,3. Despite this, it remains difficult. This study aimed to ascertain the specific services required at transition for young people with Cerebral palsy within our Health and Social Care Trust. 1.Northern Ireland Cerebral Palsy Register. Available from; https://www.qub.ac.uk/research-centres/NorthernIrelandCerebralPalsyRegister/Activities/ 2. Colver A, Rapley T, Parr JR, McConachie H, Dovey-Pearce G, Le Couteur A, <i>et al.</i> Facilitating the transition of young people with long-term conditions through health services from childhood to adulthood: the Transition research programme. <i>Programme Grants Appl Res</i> 2019;7(4) 3. Carter B; Bennett CV; Jones H; Bethel J; Perra O; Wang T; Kemp A. ‘Healthcare use by children and young adults with cerebral palsy’ <i>Dev Med Child Neurol,</i> 2020. Available at: https://onlinelibrary.wiley.com/doi/10.1111/dmcn.14536 <h3>Methods</h3> The Northern Ireland Cerebral Palsy Register held at the Queen’s University Belfast identified patients with a known diagnosis of cerebral palsy aged 14 years in 2020 (birth year 2006) residing within our trust. A lead Consultant was identified for the patients and permission sought to review electronic medical records. Proforma devised to obtain information on services currently accessed by each patient and data was extracted using information available on the Trust Community Paediatrics database, medical notes and the Northern Ireland Electronic Care Record. <h3>Results</h3> 11 patients were identified. 5 patients excluded (2 RIP, 2 had moved trust and 1 had received an alternative diagnosis. 6 patients met inclusion criteria. 33% female, 50% male and 17% transgender. GMFCS Levels were 1 (33%) 2 (33%) 5 (17%) and unknown (17%) In relation to health care services 100% were linked with a Community Paediatrician. The most common other service accessed was orthopaedics followed by Neurology, ENT, Endocrine, Cardiology and Neurodisability. Common co-morbidities included sleep and behavioural difficulties, visual and communication problems. 33% were receiving medication prescribed via secondary care (50% Sleep medication.) <h3>Conclusion</h3> Most patients at transition have GMFCS levels 1-2 and commonly require orthopaedic input. High proportion of patients have co-morbid neurological, ENT, visual, behavioural and sleep issues requiring secondary care interventions. Many require help from the multidisciplinary team including physiotherapy (83%,) speech and language (17%) and occupational therapy (50%). It is common practice in our trust for children with Cerebral palsy to be managed by a Community Paediatrician who can co-ordinate their care. Children are often linked in with multiple paediatric services but at transition the co-ordinating care becomes the responsibility of the GP. The significant pressures and shorter appointments within General Practice, along with long waiting lists in the adult sector can make transition a slow and stressful process. It is important to understand the needs of our young people at transition to plan and improve service provision.