The inquest into the death of Peter Doody concluded on Friday 3 March 2023 following two days of evidence heard by Assistant Coroner Ian Pears.
Mr Pears concluded that Peter Doody died of natural causes as a result of SUDEP. Mr Pears confirmed that he would be writing to Calderdale and Huddersfield NHS Foundation Trust in relation to his concerns that they were not documenting when SUDEP was being discussed with patients or making it clear that the patient has understood the implications of the risks associated with it. He also directed Leeds Teaching Hospitals to report back to him at the completion of their review into the existing pathways for identifying high risk/complex cases and how they can improve the existing service.
During the course of the Inquest the Coroner heard evidence from a number of witnesses involved in Peter’s epilepsy treatment and management in addition to Dr Galizia, a Neurologist with a specialist field in Epilepsy.
During the evidence the following issues were highlighted:
- That although he received a good standard of care whilst receiving treatment at Calderdale Royal Hospital, the care he received whilst at Leeds General Infirmary was sub-optimal including lack of Consultant oversight or contact or follow up around medication compliance and frequency of seizures which could have prompted further discussions about the risks of SUDEP and treatment escalation.
- There was a dispute between the family and the clinicians from Leeds General Infirmary as to whether Peter was properly advised of the risks of SUDEP and what steps he could take to minimise that risk. However, it was accepted by the Clinicians at Calderdale that the risks of SUDEP were not really discussed with Peter and his family as they had made an assumption that it had already been done whilst he was being treated under the care of Leeds General Infirmary.
Following Peter’s tragic death the family began to research into SUDEP and set up a foundation in their son’s name with the primary focus of building a community of people working to normalize Epilepsy and free young adults from stigma, limitations and fear. As part of this their key aim is to provide information and support to young adults between the ages of 17-30 with epilepsy about the risks of SUDEP so they can help reduce the number of SUDEP deaths in young adults with epilepsy.
SUDEP was discussed at length at this inquest about what a patient should be told about the risks and ways to reduce the risk of dying from this condition and when this information should be provided to them.
The family, through the Peter Doody Foundation, have today launched their ‘Stop SUDEP Silence Campaign’ to raise awareness of SUDEP. The campaign aims to create a movement to embed the message that although considered rare, SUDEP is a very real risk that patients should be informed about so they can make decisions for themselves as to how they might be able to minimise the risks around SUDEP.
Peter’s parents Joanne and Andrew said:
“We thank the coroner’s service however we have found the coronial process to be very restrictive in terms of the questions that we wanted to ask the clinician’s involved in Peter’s care.
However, in addition to the inquest we also have an ongoing complaint against the NHS institutions responsible for Peter’s epilepsy care. This complaint has now been referred to the Ombudsman, who have been waiting for the inquest to reach its conclusion before furthering their investigation.
We were never told about SUDEP by any clinician and the first time we became aware of SUDEP and the fact that Peter was at risk was sadly after his death preventing us from safeguarding our beautiful boy.
We will not stop in our fight to Stop SUDEP Silence and improve epilepsy care for young adults. Today our charity The Peter Doody Foundation has launched our campaign titled STOP SUDEP SILENCE
Please visit our website for further information. http://peterdoodyfoundation.org“
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.”
Gemma Vine, Solicitor from Ison Harrison Limited said:
“Despite there being NICE Guidelines in place about what information should be shared with a patient about Epilepsy, there are concerns about the lack of consensus between clinicians as to whether they should inform patients about SUDEP, and the factors that can increase the likelihood of those risks from occurring as well as those steps that could potentially be taken to mitigate the risk.
Peter’s parents have always maintained that had they been given the knowledge about SUDEP they would have been able to carry out their own research into the condition (which they have done through the Foundation since Peter’s death) and potentially put steps in place to help reduce the risk. They will never know whether or not this would have made a difference in Peter’s tragic death, but they are understandably aggrieved that this option was taken away from them due to the fact that SUDEP was never properly discussed with them.
Joanne and Andrew have done an amazing job in already raising awareness of SUDEP through Peter’s Foundation as well as providing seizure detection devices in the past to many families across the United Kingdom since the Foundation was set up in December 2019. I know they will continue to do so through their campaigning going forward.”
Peter’s family are being 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 are 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 care givers 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. More information on the campaign can be found in their campaign document attached.
For further information, interview requests and to note your interest please contact Gemma Vine – email@example.com