We brought together patients, experts and care system partners to identify areas of concern which contribute to premature avoidable death in people suffering with learning disabilities and autism who also live with epilepsy, and to highlight how integrated care needs to change to improve epilepsy services and reduce health inequalities.

And in this blog we dive deeper into the underlying issues and the ways to address them.

Background

NHS Midlands and Lancashire (NHS ML) were asked to work with 11 Integrated Care Boards (ICBs) in the Midlands to develop an improvement programme on epilepsy and reduce premature avoidable death. Community learning disability and specialist epilepsy services were already working together in some areas. However, at least 21 people with epilepsy were dying each week in the UK with nearly half of all epilepsy related deaths being potentially avoidable. Moreover, up to 50% of epilepsy deaths were due to Sudden Unexpected Death in Epilepsy (SUDEP), and in patients with learning disabilities and epilepsy (20-30% of the epilepsy population) the risk of sudden death was found to be more than three times higher. We were also aware of the challenges faced by commissioners and providers, including a lack of understanding of local needs, and a need for more strategic planning.

Action

We adopted a ‘whole-system’ approach and supported each integrated care system to benchmark epilepsy services across their system, including significant engagement with stakeholders across all epilepsy and learning disability services. We ensured that insight was grounded and informed by people with lived experience, that their voice is heard and needs met. This included examining an independent review into the premature death of Clive Treacey, an individual with a learning disability who suffered from complex epilepsy, and working closely with Clive’s sister.

An epilepsy advisory group was established to guide our work. We worked closely with Professor Rohit Shankar, SUDEP Action, Epilepsy Action, Epilepsy Nurses Association, International League Against Epilepsy and other national, regional and local experts who have developed the thinking on what is needed to improve outcomes.  

We supported the use of a specialist tool to capture what good looks like for services and patients, creating understanding of the full context of services and establishing some minimum standards around epilepsy services and support.

Impact

The findings from this project have given each ICB a great foundation to build improvement plans and develop their local ‘capable communities’.

The patient and system outcomes we are expecting to see include:

•Impact on premature avoidable deaths for people with learning disabilities and autism

•Increased knowledge and awareness 

•Drop in emergency department admissions

•Improved patient experience.

Phenomenal, system-wide impacts can be seen after just one year of the project, including: 

•increased focus on improving epilepsy care embedded in system-wide improvement to tackle health inequalities

•bringing together of system partners to drive improvement

•shared understanding of the extent to which services are working well together to deliver good care

•clarity where gaps in provision or quality exist, and a springboard for new or enhanced services identified

•shared understanding of workforce capacity and capability, and where further investment is needed

•better use of system-wide resource to improve outcomes

•foundations in place to support the development of integrated epilepsy care and improved strategic commissioning.   

National experts and regional leads have given this project a great deal of attention and fully support the plans for improvement. Through this work, the NHS ML team now have a tried and tested blueprint for getting whole-system understanding and buy-in which can be used for similar projects in the future.

The project was shortlisted for Learning Disabilities Initiative of the Year at the 2023 HSJ Patient Safety Awards.

“This work has left us not only with quantifiable actions, made populations visible and given system ownership of the service issues faced in this critical area - but has created an advocacy for change and a social movement to improve the lives for whom we absolutely need to, and can, make a difference.​”

Pardip Hundal, Assistant Director for Quality Improvement and Health Inequalities, NHS England