Press Release – 24th February 2023
Peter Doody was just 17 years old when he was diagnosed with epilepsy when under the care of Calderdale and Huddersfield NHS Foundation Trust. When he turned 18 he moved to Leeds to study at the Leeds College of Music. Whilst there he was under the care of the neurology team at Leeds General Infirmary.
In 2018, he moved back to Calderdale eventually moving back in with his parents. He was at home when he died in his sleep on the night of 2/3 May 2019 aged just 21. Due to there being no positive findings at post mortem his cause of death was determined as Sudden Unexpected Death in Epilepsy (SUDEP).
The Inquest into Peter’s death will explore the management and treatment of Peter’s epilepsy and the impact that this may have had on his sudden death in 2019.
Gemma Vine, specialist inquest solicitor at Ison Harrison solicitors, commented:
“Peter’s family wants his inquest to raise awareness of SUDEP and the risks associated for young people who have a diagnosis of epilepsy.
“They have concerns surrounding a number of areas including the lack of a consensus as to when clinicians should inform patients and their families about the risks of SUDEP, the factors that can increase the likelihood of those risks and the steps that can potentially be taken to mitigate any risks.
Another area that needs addressing is the lack of consensus as to which patients with epilepsy should be informed about the risk of SUDEP. Peter’s family strongly believe that being informed of the facts allows for positive steps to be taken on the patient and family’s behalf so that any potential risks can be reduced wherever they can.”
Following his death, a Foundation was set up in Peter’s name by his parents Joanne and Andrew Doody. They created the foundation to support other young adults, their families, friends and carers who are dealing with the effects of epilepsy so that more people are well-informed and able to carry on with their lives to the fullest potential.
The Peter Doody Foundation’s ‘Stop Sudep Silence’ campaign aims are to create a movement to embed the message that sudden unexpected death in epilepsy is a genuine risk and that clinicians must inform patients and caregivers of SUDEP at the time of diagnosis or soon after as the NICE guideline dictates. This will hopefully avoid future unnecessary deaths like Peter’s.
ENDS
Peter’s family is represented by Gemma Vine, Ison Harrison Limited and Counsel Caroline Wood, Park Square Chambers, Leeds.
Other interested persons are Calderdale and Huddersfield NHS Foundation Trust and Leeds Teaching Hospitals NHS Trust.
Peter’s parents set up the Peter Doody Foundation following their son’s death. The purpose of the Foundation is to support other young adults living with epilepsy as well as their family, friends and carers and to raise awareness of not only SUDEP but the many other obstacles and challenges that those living with epilepsy face on a day to day basis. – http://peterdoodyfoundation.org/
The Peter Doody Foundation is launching the “Stop SUDEP Silence” Campaign at the conclusion of Peter’s Inquest. This campaign aims to create a movement to embed the message that although ‘considered’ rare, sudden death in epilepsy is a very real risk and that clinicians must inform patients and their caregivers of SUDEP at the time of diagnosis or soon after as per the NICE guidelines. They hope that this campaign can create change that will avoid unnecessary deaths like Peter’s.
Robbie Moore MP, Member of Parliament for Keighley and Ilkley, commented:
“The Peter Doody Foundation’s ‘Stop Sudep Silence’ campaign has my full backing, and it is my sincere hope that this inquest serves as a turning point for persons with epilepsy (PWE) and their families going forwards, shining a light on the very real risk of SUDEP and helping to prevent avoidable deaths in the future.
It was an honour to meet Joanne and Andrew to hear about how their Keighley-based charity are leading the way in raising awareness about SUDEP, and I will do all I can in Parliament to support this campaign. Difficult conversations can sometimes be lifesaving ones, and it is vital that persons with epilepsy (PWE) are informed of the risk of SUDEP at the time of their diagnosis.”
