734 'Me and Epilepsy': An audit of a pilot bespoke clinical tool facilitating conversations with children and young peoplearound emotional wellbeing and relationship with epilepsy. (17th August 2022)

• Record Type: Journal Article
• Authors: Fidoe, Darcy; Jones, Samantha; Pauling, James; Derwas, Eleanor; O'Brien, Jennifer; Murphy, Jayne
• Is Part Of: Archives of disease in childhood. Volume 107(2022)Supplement 2
• Page Start: A453
• Page End: A454
• Publication Date: 2022-08-17
• Subjects: Children -- Diseases -- Periodicals; Infants -- Diseases -- Periodicals; 618.920005
• DOI: 10.1136/archdischild-2022-rcpch.735
• Languages: English
• ISSNs: 0003-9888

Abstract

Abstract : Aims: Children and young people (CYP) with epilepsy have a high rate of psychosocial comorbidity. National recommendations from the RCPCH Epilepsy12 audit include ongoing screening for mental health difficulties, and if appropriate signposting or onward referral. The NHS Best Practice Tariff for epilepsy mandates co-located mental health provision within epilepsy clinics which also supports guidance presented by RCPCH on integrated mental health support in epilepsy services. Arrowe Park Hospital's Paediatric Epilepsy MDT, including a clinical psychologist, initiated ideas on screening for broad and epilepsy-specific psychological need, whilst utilising resource and capacity optimally. The project aimed to audit the implementation of the 'Me and Epilepsy' tool in our Paediatric Epilepsy Clinic to facilitate conversations around emotional wellbeing and specific epilepsy-related psychological need. An additional aim was to capture data on current support being received by CYP, signposting and referrals made for psychological support. Methods: We designed the 'Me and Epilepsy' tool ( figure 1A ) in conjunction with feedback from five CYP and their families; the title reflects the relationship with self as well as epilepsy. The tool intended to identify a range of psychosocial and epilepsy-specific need, as well as encouraging CYP to share pre-existing coping strategies and what they wished to discuss in clinic. The tool was distributed on the day of appointment by clinic staff to CYP aged 7 or over with a confirmed epilepsy diagnosis attending at least their second appointment following initial diagnosis. The tool was not offered to CYP with a significant learning disability or if already completed within the time period. The CYP could complete independently and/or seek assistance from a carer. A total of 55 completed tools were audited prospectively between July and December 2021. Results: We considered worry ratings of 'often' and 'almost always' as being of most significance. 20% of children and young people had 5-9 worries rated as 'often' and/or 'almost always. figure 1B shows the burden of worries/feelings to the CYP. The biggest worries, as rated by CYP as 'often' or 'almost always, ' were related to memory and attention (38%), sleep, anger, friendships (29%) and anxiety and behaviour (27%). The biggest epilepsy-related worry was seizures (24%) and medication (15%). 33% of CYP rated epilepsy as exacerbating pre-existing worries. 85% CYP shared pre-existing coping strategies; 40% listed talking to or being with people was the most helpful strategy, followed by mindfulness and being alone (20%). 51% had questions/areas of focus for clinic; the largest number of questions were regarding medication (20%), epilepsy as a disease (15%), and their symptoms (13%). 20% were referred for further support (CAMHS, external agencies, paediatric psychology). 20% were already accessing support. 90% of CYP found the tool useful for their clinic appointment. Conclusion: Overall the tool gained positive feedback. To improve and meet best practice standards we are revising the tool to include parental perspectives and devising a new tool for children with learning needs in conjunction with parents. An additional outcome of the tool is developing a directory of resources and a pathway to refer onto appropriate mental health support.