SUDEP Action

Making every epilepsy death count
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Project shortlisted for 2023 HSJ Patient Safety Awards


SUDEP Action is thrilled to be part of a project shortlisted for the Learning Disabilities Initiatives of the Year award at this year’s HSJ Patient Safety Awards.

The awards recognise safety, culture and positive experience in patient care, celebrating its worthy finalists on a national scale. A record-breaking 515 entries were received for this year's awards across 24 categories.

NHS Midlands and Lancashire CSU (MLCSU) and NHS England Midlands teamed up with charities and experts including key partner SUDEP Action to spearhead a highly successful regional improvement programme to tackle the pressing issue of premature avoidable death amongst people with learning disabilities and autism living with epilepsy. The partnership worked closely with 11 integrated care systems across the Midlands, supporting them to mobilise partners in a whole-system approach to improvement.

The programme was inspired by the story of Clive Treacey, who died in care in January 2017. His family campaigned tirelessly for Clive's life and death to be properly scrutinised and in July 202 NHS England commissioned an independent review into the serious matters raised by Clive's family about his experience of care and the circumstances leading up to his death. 

Following The Clive Treacey - Independent Review, a breadth of opportunities was identified for learning from Clive’s life, with over 50 recommendations for system-wide improvement at a local, regional and national level.

Through the implementation of a tailored self-assessment tool and guided by lived experience and specialist expertise, MLCSU and partners helped systems establish a shared understanding of service delivery, workforce capacity, and capability, and generated evidence-based improvement plans. The programme works to support a reduction in avoidable deaths, health inequalities, and hospital admissions, providing a framework for ongoing evaluation.

Jane Hanna, SUDEP Action CEO, said: "We are delighted that SUDEP Action has been leading on work over the past year with carers and commissioners, and providers of residential care for people with epilepsy and learning disabilities. We will be publishing practical guidance this summer to tackle this gap."

Improving epilepsy care specialist settings 

In response to the shortlisting Elaine Clarke, sister of Clive Treacey, 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.”

Winners will be announced during the awards ceremony at Manchester Central, on September 18th 2023.

Full shortlist here


The most coveted accolade in UK healthcare, the HSJ awards is the largest annual benchmarking and recognition programme for the health sector. For more than 40 years, the awards have been celebrating healthcare excellence through huge political, technological and financial challenges within the sector. Through a rigorous, fair and transparent judging process the awards produce a roll call of the best organisations, teams and people in the NHS and the wider health sector.