A woman was convinced she had murdered her husband after waking up to a ‘crime scene’.
Sharon Martin was screaming in fear she could vividly see blood all over her bedroom in July 2021 and a gun which she believed to be the weapon.
"I saw his body, the gun, the blood - it was like something out of a film,” the 54-year-old said. "I was just screaming 'Chris, have I shot you?'”
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But then, her - understandably pretty confused - husband woke up.
Of course, there wasn’t any kind of ‘crime scene’ in their room and Chris reassured her everything was fine while she sat on the edge of the bed, thinking she could see herself from above being ‘controlled by a puppet’.
The woman, from South Wales, was rushed to Southmead Hospital, Bristol, where it was found she had fluid and a cyst on the brain.
Seven years beforehand, Sharon underwent clinical trials to test the effects on her Parkinson’s condition.
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"We had to have a delivery system implanted in our brain,” she explained.
A titanium port delivery system was put into her brain behind her left ear connected to a catheter, where she received monthly injections of growth protein GDNF.
"It really helped - it was like a cure. No tremors, my walking was batter, my balance - it was the most amazing thing,” Sharon said.
Ultimately the trail failed as the results were inconclusive and the system was left in her brain.
She added: "They said it would all be fine afterwards."
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However, infection took hold as it leaked into the brain and the hospital ended up removing the whole system.
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"All the system was removed but no one has ever said that the fluid and cyst has gone - I've got no idea,” Sharon said.
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"It wasn't the best time of my life - it was like they didn't believe me when I described what happened."
The woman claims she wasn’t given ‘any apology’ and was ‘told it was part of the trial’. And now she says she’s been left with a ‘terrible’ memory.
"Sometimes now I still don't know where I am - I just blank out at random moments,” she explained.
"They put it all down to the progression of Parkinson's, but I know it's different. I think the true Sharon is long gone."
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While she recognises it was her ‘choice’ to do the trial, she added: “I did think there was going to be some sort of aftercare. The services are not there for Parkinson's."
Plus, now whenever she looks at Chris she feels ‘guilty’ as she is having ‘trauma counselling’ after having ‘flashbacks every day’ to when she believed she killed him.
Tim Whittlestone, Chief Medical Officer at North Bristol NHS Trust, said: “We are very sorry to hear about this individual's concerns and would encourage her to reach out to us directly so we can appropriately look into the issues she has raised. Whilst we cannot go into the specifics of individual cases, as a research centre we are very grateful for all patients who participate in a clinical trial.
"Without these participants, we would be unable to deliver groundbreaking research. This is nowhere more true than in Parkinson’s Disease where our clinical and research teams are working tirelessly to seek novel and enduring treatments. Unfortunately, some participants will experience a negative consequence from a trial treatment.
"People in research studies are very well supported and monitored, often more so than patients being treated outside of a clinical trial.
"Understanding these negative effects is just as important for us as celebrating the positive benefits and so we encourage anyone who is part of a trial, and has concerns, to reach out to their clinical team, research team or to our Patient Advice and Liaison Service."
Claire Bale, Associate Director of Research at Parkinson's UK, said: "Sharon took part in a pioneering trial which showed real promise, but she unfortunately had a bad experience after it ended.
"We sympathise with her and the handful of other participants who had similar outcomes, and we have worked closely with the clinical team to support them throughout. The hospital is responsible for the care of clinical trial participants but, as a major funder of this research and leading UK charity for Parkinson's, we see it as our responsibility to support participants like Sharon.
"Working with the GDNF participants and the clinical team, we have learnt lessons which inform all ongoing trials.
"We thank Sharon and all who take part in vital trials as we would be unable to find better treatments and ultimately a cure for Parkinson's without them."
Jess Battison