An NHS England-funded project designed to reduce the epilepsy risks faced by people with learning disabilities has been shortlisted in HSJ’s Patient Safety Awards

Working with health and care systems across the Midlands, the project team carried out a range of activities designed to protect people with learning disabilities and autism who also suffer from epilepsy.

Robert Ferris,  NHS England’s Programme Director for Learning Disabilities,  Autism and SEND in the Midlands, said: “Epilepsy is one of the most common and preventable causes of death for people with learning disabilities. The condition affects about 22 per cent people with learning disabilities – compared to just under one per cent of the general population.

“This programme of work has been a direct response to the learning from the Clive Treacey Independent Review and the Learning Disability Mortality Review (LeDeR) Programme, which has made the case for urgent change. This programme is about improving quality of life and tackling the premature mortality associated with epilepsy for people with a learning disability and autism.

“We’re extremely pleased that the progress we’ve made so far has been recognised by the HSJ judging panel. We’re committed to improving the quality of life for people with learning disabilities and we hope the learning from this project will continue to help improve the lives of people with learning disabilities and epilepsy.”

The expected outcomes from the project include:

• Epilepsy guidance for the organisations that commission and provide of care for people with learning disabilities in community and residential settings

• Additional funding for specialist epilepsy nurses and consultants who can provide targeted care to patients in this group

• Epilepsy risk management training for:
  • Independent care providers
  • In-patient and out-patient teams at hospitals
  • GP surgeries

The project is dedicated to the memory of Staffordshire man Clive Treacey, who died in 2017 and whose care and treatment was the subject of an independent review commissioned by NHS England. Clive’s sister Elaine Clarke, who supported the project as a lived-experience expert, said “We, Clive’s entire family, have the privilege of carrying his love and now a legacy he would be so proud of within our hearts forever.

“We will forever be grateful and proud for the continuing dedication of so many who have supported and remain committed to Clive’s Way.  We could never have never imagined that Clive would help to galvanise a movement across all health and social care settings in the Midlands and beyond to create capable communities  keeping people with learning disabilities and epilepsy safe and living well”.

Other project partners include: All Midlands ICBs, Midlands and Lancashire Commissioning Support Unit, SUDEP Action,  Epilepsy Action, Cornwall Intellectual Disability Equitable Research (CIDER) and University of Plymouth Professor Rohit Shankar, who is a consultant neuropsychiatrist at Cornwall Partnership NHS Foundation Trust.

The award category that the project has been shortlisted for is ‘Learning Disability Initiative of the Year’. The project title is “Creating capable communities: Keeping people with learning disabilities and epilepsy safe and living well”.

A total of 515 entries were received for the HSJ Patient Safety Awards 2023, with 209 organisations, projects and individuals making it to the final shortlist. The full list of finalists for the 2023 HSJ Patient Safety Awards can be found at https://awards.patientsafetycongress.co.uk/shortlist-2023. Winners will be announced during the awards ceremony at Manchester Central Convention Centre on Monday 18 September 2023.