Epilepsy Action is among the organisations nominated for a HSJ Patient Safety Award, for a project improving healthcare for learning disabled people with epilepsy.
The Learning Disability and Epilepsy Improvement Programme, which used Epilepsy Action’s Step Together toolkit, was nominated for Learning Disabilities Initiative of the Year.
The HSJ Awards celebrate the achievements of healthcare services in the UK. This year there were 515 entries, with 209 organisations, projects and individuals making it to the final shortlist.
Step Together aims to improve care for people with learning disabilities and autism who also have epilepsy. It is a self-assessment toolkit for healthcare services. It was created in partnership with Professor Rohit Shankar from the University of Plymouth.
The toolkit allows care providers to self-assess their offering to people with epilepsy and a learning disability. It can be used by services, trusts, systems and regions across the UK to understand and evaluate what they provide.
Epilepsy Action’s health improvement and research manager Tom Shillito said: “We’re delighted to be a part of the group nominated for a HSJ Patient Safety Award.
“The impact has been twofold. The more obvious benefit is knowing what areas of strength and weakness each system has, which allows to plan improvement. The second, more unexpected, benefit was that it was necessary for everyone providing care to have cross-departmental conversations that weren’t previously happening.
“We’re hoping the Learning Disability and Epilepsy Improvement Programme will continue to improve the experiences of care for people with epilepsy and a learning disability across the UK.”
Epilepsy and learning disabilities
Epilepsy prevalence and mortality rate are higher in people with a learning disability.
The toolkit was developed following the death of Clive Treacey, who died in 2017, aged 47, following a series of system failings. Treacey had learning disabilities and Leonard Gastaut Syndrome.
A review into his death found “epilepsy care overall fell far short of acceptable practice for someone with complex intractable epilepsy”.
The nominated project involved NHS Midlands and Lancashire Commissioning Support Unit and NHS England Midlands.
It was led by NHS management consultant Hafsha Ali, who said the programme supports a reduction in avoidable deaths, health inequalities and hospital admissions, providing a framework for ongoing evaluation.
The organisations used the Step Together toolkit to establish a shared understanding of service delivery, workforce capacity and capability, and generate improvement.
Ten out of the 11 integrated care systems in the areas completed the toolkit. The results allowed the organisations to discover areas where cross-system and cross-service collaboration could improve services. It also gave them a benchmark of what their care is like now; suggestions of areas they can improve; and the ability to track their progress if they decide to complete the toolkit again in a year or two.
The awards ceremony will take place on Monday 18 September at Manchester Central Convention Complex.
HSJ editor Alastair McLellan said: “As always, it’s a pleasure at this stage of our lengthy judging process, to be able to offer my congratulations to Epilepsy Action.
“Every one of the projects, trusts, teams and individuals who entered this year have truly demonstrated their skills in setting – and delivering – the highest of standards in healthcare excellence, presenting our venerable panel of judges with some difficult decisions.”
The full list of finalists for the 2023 HSJ Patient Safety Awards can be found here.
If you are interested in completing the toolkit for your service, trust or system, all of the details can be found at: Step Together – Epilepsy Action