Grieving parents Jack and Irene Silberston are considering what action to take after Southend Hospital admitted their son underwent surgery without an anaesthetic, before dying of blood poisoning.
The doctor believed that, because Perry, 22, suffered from spina bifida, he could not feel any pain during the procedure to change a catheter.
The operation was needed because a stricture had formed in his urethra and it was impossible to change the catheter routinely.
The procedure in the operating theatre was not completed.
Mr Silberston said his son went into a convulsion, and was blue when he came out of the theatre. He died two days later after developing blood poisoning.
Perry's father, 68, of Pine Close, Leigh, said: "He was not given any anaesthetic on the basis he was spina bifida and therefore had no feeling. I really believe it is horrible to go ahead with surgery on the basis that a person has no feeling. I believe Perry did feel pain."
A letter received from Chris Humbles, director of quality and nursing at Southend Hospital, confirmed that no anaesthetic was administered to Perry.
It stated that Perry's consultant neurologist was certain that Perry would not have felt pain.
Mr Humbles' letter says: "A stimulus which might cause pain in a fully sensitive patient would, in Perry, produce a reflex action.
"This might have appeared as if it was a response to pain. However, the action would come from the spinal cord and not the brain so, although it looked like a response to pain, it would have been in fact a response to stimulation of the nerve."
The consultant believed that the surgeon who attempted to perform the operation "misinterpreted" Perry's movements, thinking he was moving from pain.
Mr Silberston said he wanted to ensure that, in future, surgeons would not assume patients with spina bifida have no feeling.
"They were unable to complete the surgery because Perry reacted violently We did not realise until six months later that no anaesthetic had been given."
Perry was a committed charity worker who campaigned for wheelchair users and to save Southend Hospital's cancer unit
Before his death last July, he had already been awarded damages of £175,000 from Oldchurch Hospital, Romford, and would have attended the High Court in London this year for a judgement to cover the costs of his future care needs.
Oldchurch Hospital had admitted liability for Perry's loss of sight, unnecessary surgery and burning his hand.
Mr Silberston said: "Our son endured eight years of inappropriate medical treatment administered by people without specialist knowledge or experience of spina bifida. Our views were ignored by both Southend and Oldchurch hospitals."
Chris Humbles, director of nursing and quality at Southend Hospital, said the family's complaints had already been fully investigated and a detailed reply given. He said: "We are sorry if they remain dissatisfied and can only repeat our offer for their concerns to be reviewed personally by the hospital's chief executive."
Robert Lane, honorary secretary of the Royal College of Surgeons, said: "As far as I am aware there is no general rule regarding anathestics and spina bifida sufferers."
The National Association of Spina Bifida and Hydrocephalus is now looking into the case after being contacted by Perry's parents.
Publicity officer Tony Britton said: "It seems very bizarre that someone with spina bifida is operated on without an anaesthetic in the belief they did not need one."
Both groups, however, were keen to point out there was not necessarily any link between the lack of anaesthetic, the convulsions suffered by Perry and the blood poisoning.
No anaesthetic - Perry Silberston died of blood poisoning two days after undergoing surgery at Southend Hospital
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