SUDEP Action

Making every epilepsy death count
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'Clive was a shining light in our family'

A Statement from Elaine Clarke, sister of Clive Treacey

“My brother Clive had a learning disability and epilepsy. This is one description, but it did not and should not have defined him.  He was engaging, humorous, gentle and loving.  He was a talented artist and gardener. He loved music. He had aspirations and plans for his life. We had many questions about what happened to him and how he died.  Until you have been through it,  you have no idea how the system works, what your rights are and what you need to do to try and get answers to your questions. 

Clive had been in ATUs (assessment and treatment centres) and other settings where he was detained for ten years. Our family fought unsuccessfully over those years for him to be released to a different life, where he would be safe and able to live as he wanted. We had longstanding concerns about his treatment. Clive had recurrent seizures and needed to be monitored regularly overnight.  He had a sleep apnoea machine which he needed constantly, to help his breathing and because of the risks associated with sleep apnoea and epilepsy. We had many questions about what happened before he died:  his sleep apnoea machine had not been working for several months, the staff had only basic training and could not meet his epilepsy needs. 

The post-mortem report had lots of obvious mistakes in it. We had to fight to have a jury at the inquest and to try to get an expert witness to give evidence. We had to fight to get documents disclosed to us and even then, we didn’t get everything we asked for. This was a very difficult and wearing process to go through even though we had legal help and were really determined.  All the while, we are still grieving for Clive. 

Throughout Clive’s life, and after he died, I kept every document relevant to his care and what happened to him, a note of every conversation and telephone call.  This has been incredibly useful in what unfolded after he died and was the foundation for me being able to press ahead with getting Clive’s case to be looked at and to persuade people to take it seriously. I have had a long fight to get here. The standard processes that families are supposed to use, for example, the complaints process or a safeguarding alert, did not work for us. 

Many families who go through what we went through are too broken to act and fight, but I  have found some comfort in the NHS England review process. I have had good experiences with those looking into what happened to Clive; the wrong has been acknowledged. I feel understood and hope Clive’s story will be understood in the wider world so that changes and improvements can be made in order to help others.

Clive was a shining light in our family and I always felt incredibly blessed that he let me speak on his behalf at certain times during his life. However, he never stopped speaking for himself and through the pages of this report he is still doing that today."