Brian Smith has spent a quarter of a century searching for answers. First, an explanation for the excruciating physical pain which he suffered for almost 15 years and then for the further decade which he spent dealing with the fallout from a series of failings in his treatment - and the effect which they had on his mental health.
Lancashire-born Brian, 72, is now calling for an overhaul of the way the NHS deals with complaints from mental health patients.
He says that his long-delayed recovery can never be complete until he receives an acknowledgement of the events which comprehensively ruined his life.
“I lost pretty much everything, because of what happened to me - my job, my close relationships, my social life and my ability to function properly,” Brian recalls.
“I’ve got two degrees and used to be able to do complex equations in my head, but at my lowest point I couldn’t even add two numbers together.”
Brian’s is a complex story of the delicate balance between physical and mental health and it began back in 1990 when he was based in Scotland.
“It all stems from what I now know was a simple prostate problem. But the doctors got it all wrong and came to the conclusion that I was mentally ill.
“I was in the most dreadful pain - my whole life was spent trying to find toilets or a wall to jump over to pass water, “ he remembers.
By 1993, Brian - a qualified engineer - could no longer carry on working. Yet GPs in Scotland - and later the Lake District, where he moved - continued to insist that he was suffering from depression.
On the one occasion which he was actually sent to hospital to be assessed, an administrative error meant that a request for him to be referred for a prostate test was never actioned.
After another nine years in appalling pain, Brian found himself at the doors of an accident and emergency unit in France during a holiday. Unable to stand or pass water, he was rushed to theatre to have his prostate removed.
It was ten times the size which it should have been.
“The doctors in France wanted to know what on earth the medical profession had been playing at back in the UK,” Brian says.
It was a question which he wanted answering, too - but he says the process of trying to find out was almost as painful as the physical discomfort from which he had been suffering for so long.
Meanwhile, in a cruel irony, the initial misdiagnosis of a mental health complaint and the resultant delay in treating his genuine physical condition, meant that Brian was indeed now mentally unwell - and so his nightmare was far from over.
He was now left fighting a battle on two fronts - to get an acknowledgement of the failures in his treatment and help for the mental health problems which they had caused.
“When I came back from France and asked my then GP for an explanation, she said, ‘What do you want to know for? You’re fine now’.
“But I needed answers - I’d lost so much because of what had gone wrong, I couldn’t just forget about it. It wasn’t about getting compensation or anything like that, I just wanted to understand.”
Brian also wanted help to put right the mental harm which he had suffered - but it proved as difficult to come by as the simple prostate operation which he had needed so many years before. The problem was exasperated by changes to mental health services in the part of Cumbria where he was living at the time, meaning that he fell through the cracks of a system which had already betrayed him so badly.
When he did eventually get some help, not only did Brian think it inadequate - he was given cognitive behaviour therapy rather than counselling - but it served to make matters worse.
“Even though I had a physical diagnosis by this point and they could see what I had been through, they kept suggesting my mental health must have been due to childhood problems,” Brian recalls.
“For a while, I believed the doctors - you do, because they are the experts. But that suggestion really damaged my relationship with my parents and I rejected them at a time when I desperately needed their help.”
Brian says that he was “lucky” to have repaired relations with his parents before they died - by which time he had finally received the answer which he had been seeking for so long.
In 2016, he was diagnosed with trauma - attributed to the way in which his physical condition had been overlooked.
It was only once that long-suspected confirmation came that he began to recover mentally - and decided to revisit the complaints process which he had first attempted to pursue years earlier simply to get the mental health treatment he needed at the time.
But by that point, he felt the NHS had closed its ears. The Parliamentary and Health Service Ombudsman declined to investigate his case, because a 12-month time limit for complaints had long since expired.
“These were NHS mistakes, but the NHS will not investigate them. They won’t look at the whole story over the course of all those years and that’s what would be needed to investigate it properly.
“The one-year time limit should go out of the window for mental health complaints, because it can take so long to recover. There is a complete disconnection between mental and physical health in this country - that’s how the mistake which caused all of my problems was made in the first place.”
Brian feels that his experience is part of a pattern which disadvantages mental health patients who want to complain about the way they have been treated. He claims that the independent advocacy services, whose role involves assisting vulnerable people with the complaints process, is just one element of a system which is “not fit for purpose”.
“I hoped that the various advocacy services which I saw over the years could help me get some treatment, but that wasn’t the case. They can help you write a letter of complaint, but I still had to make a decision about what to put - and I was in no fit state.
“The complaints system added to my problems and was no help at all at the end of the day.”
Brian, who was an engineer involved with the birth of BBC local radio in the North West, has not worked in 25 years. He has recently moved from Bamber Bridge to Silverdale, where he hopes to make a fresh start free from the health problems which have dogged him for nearly three decades.
His aim is to finally rebuild his life, so much of which he feels has been needlessly lost to physical and mental suffering.
In their response to Brian Smith’s complaint about his treatment, the Parliamentary and Health Service Ombudsman said that the period of time which had passed since the events in question had been “lengthy”.
Under government legislation, the Ombudsman is required to consider only those complaints which relate to incidents in the preceding 12 months - “unless there are reasons to disregard the time limit”.
In a letter back in February advising Brian that his case would not be investigated, the Ombudsman said it had considered whether a “meaningful outcome” could be achieved.
“Given the passage of time, we would be unlikely to be able to achieve service improvements,” the correspondence said.
“This is because, if we identified failings, we would make recommendations to address those specific failings. But because these events occurred so long ago, it is likely that the service has already changed and evolved and therefore any recommendation for service improvements is likely to be irrelevant,” it added.
The Ombudsman did not comment on the specifics of Brian’s case when contacted by the Local Democracy Reporting Service, but a spokesperson said:
“We consider complaints about mental health treatment carefully and published a report last year based on our findings, which called on the NHS to continue improving services in this area.
“The law requires complaints to come to us within one year unless there is a clear reason why this wasn’t possible. It’s important the NHS signposts people to their local advocacy services so they can be supported through the complaints process.”
Richard Colwill, spokesman for the mental health charity SANE, said:
“At SANE we regularly hear of people who feel doubly punished, not only by having a diagnosed mental health problem but also being unable to access prompt and effective treatment to aid their recovery.
“The sense of injustice when something goes wrong with your care can be overwhelming. We would hope that any complaint arising would be dealt with promptly and an acknowledgement made to help the individual concerned move on with their life.”