Health and Social Care minister Dr Zubir Ahmed discussed government support for the Clive Treacey Safety Checklist, designed to help meet care and safety standards for people with epilepsy with learning disabilities, autism or both, in Parliament on 17 November.
The checklist was developed after Clive died from a seizure and cardiac arrest in 2017 at the age of 47. After his death, an independent review found that his death was “potentially avoidable” and that “multiple system-wide failures in delivering his care and treatment” had placed him at “higher risk of sudden death”.
Clive’s family has been campaigning tirelessly for justice for Clive and for change and better understanding of epilepsy with learning disabilities since his death, to help improve care for others in his situation.
Elaine Clarke, Clive’s sister, and the rest of his family said: “Clive would have been so proud to hear his name said out loud in the House of Commons.
“We, his family, have fought for him for many more than the 47 years of his short life to receive the recognition and respect that was delivered in the adjournment debate. His voice and ours were heard and placed on the record.
“It’s hard to describe what that meant to us, but as importantly, what it will mean to the thousands of other Clives who have a right to the care and support we have described in the Clive Treacey Epilepsy Safety Checklist.”
Inspiring a movement
The safety checklist, developed by the NHS, the University of Plymouth and SUDEP Action, aims to support commissioners, specialist hospital providers and community care providers to support safe and effective epilepsy care in people wit the condition and a learning disability and autism, or both.
According to Epilepsy Action’s Step Together guide, about one in five people with a learning disability also has epilepsy. People with learning disabilities have a shorter life expectancy than the general population, and mortality rates increase with more severe learning disabilities and if there are also comorbidities including epilepsy.
Replying to in the debate tabled by Labour MP Dave Robertson, Dr Ahmed paid tribute to Clive’s family and loved ones and the way they have channelled this tragedy into advocating for change.
He highlighted that he is pleased to see organisations making changes in the wake of Clive’s death and the findings of the independent review. He added that the safety checklist is an important part of Clive’s legacy, encouraging its use.
Elaine added: “We did not get here alone. Clive’s story has inspired a movement – the work and achievements have inspired an army of committed health and care professionals who have stepped up to do things ‘Clive’s Way’ and helped to create this wonderful tool, amidst many other actions designed to protect the lives of others.
“It is our sincerest wish that the implementation of this safety tool will enable people with a learning disability and epilepsy to live longer and healthier lives.”
Determined to create change
Speaking in Parliament, Dr Ahmed said: “I would also like to recognise the important work of organisations like Epilepsy Action and SUDEP Action. Epilepsy Action has produced the Step Together toolkit which describes what good quality integrated services for people with a learning disability and epilepsy should look like.
“SUDEP Action has developed an epilepsy self-monitoring app, which is a digital tool designed to help patients understand their own personal risk of seizures and to track this risk.”
Tom Shillito, health improvement and research manager at Epilepsy Action, said: “It is great to see Health and Social Care minister Dr Ahmed spotlighting epilepsy and learning disabilities in Parliament, and in particular our Step Together guidance.
“Our team has worked incredibly hard on this resource, which is part of the vital work Epilepsy Action, and others, are doing to improve the care for people with learning disabilities and epilepsy.
“Clive’s story is nothing other than shocking and tragic, and it is in his legacy that we are determined to create change. The Clive Treacey Safety Checklist has our full support, and it has been humbling to be able to work with Clive’s sister, Elaine, to promote this.
“We’re pleased to hear that the Minister is fully committed to these proposals, and we hope to see real change in the care for people with learning disabilities and epilepsy.”
Epilepsy and learning disabilities
Information for carers of people with epilepsy and a learning disability.