Consultant Paediatric Neurologist
I have been working as a consultant paediatric neurologist in Leeds since 2001 when I became the Lead for Children’s Neuromuscular Services. It has been a pleasure working with the families and young people under our care and being part of the NM multidisciplinary team.
I am committed to delivering high-quality care to all CYP with NM disorders in Yorkshire and thus work closely with colleagues in other disciplines, with partner charities, industry and the UK NM networks. . I am a member of the Northstar and SMA REACH steering committees. I am trustee of SMA UK.
My clinical research interests include MR imaging and rare disease phenotyping, although my predominant research involvement is now in relation to DMD and SMA, having conducted > 15 trials in DMD and 3 in SMA I am also leading some non-commercial studies on impact of ethnicity and deprivation on outcomes in DMD with a previous DUK research fellow as well as completing work done by our NM well being practitioner on the role of the DMD QoL in clinical practice.
I am a member of the DMD Hub and its CRD steering committees.
I have been actively involved in the DMD Care UK project from its inception and remain on the steering committee. I chaired the working group that developed new BTS endorsed guidance for the respiratory care of those with DMD. I am a member of the groups working on nutritional care and the use of corticosteroids. With Lisa Cutsey, chair of the working group looking at transition of care for those with DMD from children to adulthood, I successfully applied for an additional grant from DUk and Joining Jack to enhance and extend the project.
I have been a clinical expert for the NICE technology appraisals for Nusinersen, Translarna, Vamolorone and now Givinostat. I am a paediatric clinical expert for the NHSE panel to support novel treatments in SMA.
Having been inspired by DMD Care UK, I have worked with SMA UK to develop and leading a project to optimise care for those living with SMA in the UK: SMA Care UK. The project has been co-funded by industry and charity and is on course to produce the 1st 4 areas of guidance by the end of 2025.