A man woke up every day planning his death because he did not want to die with dementia, only to find out he was incorrectly diagnosed. The Leicestershire Partnership NHS Trust (LPT) says it is now conducting a review into the case.
Alex Preston, from Anstey, was diagnosed with Early Onset Alzheimer’s at the age of 55 by a consultant at the Bradgate Unit, part of the LPT in 2014. Mr Preston, now 62, had two scans and completed several memory tests over the space of around six months.
After this, his consultant told him he had Alzheimer’s disease. The diagnosis destroyed both himself and his wife, Susan.
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He said: “My wife and I sat in the car crying for an hour, because we’d got so many plans for the future and everything was just destroyed overnight, it was just gone. When they diagnosed me, I had no reason not to believe it because when a professional tells you that…
“I was 55 years old, I knew I was going to lose my job and my world fell apart. I just wanted to kill myself.
“I have spent over seven years thinking today I’m going to kill myself. I didn’t want to die with dementia.”
A few years after his diagnosis, Mr Preston got involved with the Alzheimer’s Society charity. He did talks with trainee doctors and at conferences about what it was like to live with the disease, as well as short videos for the Young Onset Dementia app.
“It took about two hours to film such a short thing [for the NHS YOD APP] because I kept breaking down and crying in it,” he said. “And I genuinely believed I’d got Alzheimer’s disease.
“All the time it was just reinforcing the diagnosis for me. There’s pain in Alzheimer’s, you’re just waiting for it to deteriorate and that’s what destroyed me.
“The slightest little thing, if I put a cup down and couldn’t find it, became a major issue. It didn’t make me nice, and I regret that because Susan, bless her, she had to put up with me being miserable all the time.”
Unfortunately, Susan was diagnosed with terminal cancer in 2018. She died in November the following year.
“When Susan developed cancer, my focus was only on her,” Mr Preston said, “I was terrified – I always thought it would be me dying first.
“Doctors wouldn’t talk to me about it because of my diagnosis. I may not have had Alzheimer’s but I’ve damn well lived the thing.
“Susan had made me promise to look after the dogs. I was determined to do it as much as I could.
“But I had been left in the house with a load of Oramorph and I used to sit with a bottle of whiskey looking at it. I never drank the whiskey, I never drank the Oramorph, I just didn’t want to let the dogs down, I just didn’t want to let Susan down.”
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Despite the fact that he had cared for his wife alone for 15 months and visiting nurses had said he was doing well, nobody thought to reassess Mr Preston or question his original diagnosis.
When Covid hit, Mr Preston said he heard less and less from the hospital. He started walking and getting on with his life without having anyone around to reinforce his diagnosis.
Friends and family started to tell him that he seemed like he was getting better. “I got fed up of them telling me it and I started asking for a scan,” he said.
“I wanted to see where I was in my journey, because I know after that length of time, there should have been evidence on the scan.” He was eventually assigned a new nurse, who he describes as his ‘saviour’.
She put him in touch with a new consultant and, after fresh memory tests and a final scan, his original diagnosis was labelled incorrect. Mr Preston says he later found out there was no evidence of disease in his original scans, and alleges there were errors in marking and scoring in the tests leading to his diagnosis.
“I’m happy I’m here,” he said, “but I still live with this constantly going through my head. All the years I lost. All the damage it did in many ways. It just destroyed me as a person, but I’m back now.
“If they got me wrong, how many other people have they got wrong? Are there other people out there going through what I’ve gone through? I do not want this to happen to anyone else because it completely destroyed my life.”
(Image: Leicester Mercury)
LPT is currently carrying out an investigation into Mr Preston’s case after he filed two complaints with them. Their first response apologised for the impact the initial diagnosis had on his life and well-being.
LPT said: “Leicestershire Partnership NHS Trust take all complaints very seriously. The Trust has been liaising closely with Mr Preston since the complaint was first raised.
“We are currently undertaking an independent review of the case, with an independent clinical witness from outside of our Trust; it would be inappropriate to comment further until this review has been concluded and shared with Mr Preston.”
The Trust declined to respond to our questions on whether there have been other patients who this has happened to and what actions the Trust has taken to make sure it does not happen again.
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