Imagine a world of pain, of loss of taste, sensation and your senses in General. A fight for 15 years to get a diagnosis. Doctors opining that your cheese has slipped of your cracker without them ever telling you. You finding out that such opinions exist, self-referring yourself to a psychiatrist who says in no uncertain terms that you are 100% free of mental health issues – only for doctors to continue opining. Being abandoned for another decade, in severe pain, ending up with type II diabetes and other comorbidities and being referred for surgery to fix it – being denied that surgery on a technicality, fighting for four years just for a second opinion – never getting that second opinion and having to take legal action – only for your medical files to be handed to you and in your search to deciphering it, they probably had the answer all along.
The problem? Your deteriorating health has likely been the result of doctors giving you medication for symptoms because they couldn’t be bothered to step back and look at the bigger picture and go further back into your records – like the time you were a child and had to learn how to walk properly because you had motor difficulties.
For years I have had numerous medical issues – and it would seem that they weren’t just ignored by NHS Fife, they were caused by them.
I’ve omitted a lot of details from my medical history over the years, purely because I didn’t want them out there. But during the election campaign, what a lot of people were unaware of is that I was going through serious withdrawal, tapering back on 15 years worth of opioid medication? The reason? In my search to decipher my medical records and understand the terminology, a friend in the medical field noticed two sets of information that were not present in the records released by NHS Fife to my lawyer.
Of course he couldn’t have known that because he was present during the events.
There is a single line note about surgery in 2006, an appendectomy with the words “healthy appendix removed”. Now I was unaware of this fact, I was always told that they were removed, that the surgery was curative, but it turns out, the surgery did nothing. I wasn’t even told that they were healthy. The surgery was conducted purely based on physical examination of right-sided iliac fossa pain (lower abdomen) with no other tests it would appear. I’ve been told this is way too common an occurrence. There are over 5000 unnecessary appendectomies per year in the UK. It has the highest instance of unnecessary surgeries in Europe because surgeons seem too “we’ve always done it this way” to get a CT. Over a third of women are often put through the procedure unnecessarily, 1 in 6 for men.
And of course, this piqued the interest of the surgeon assisting me, namely because one of my primary medical issues being thigh pain and in appendectomies, nerve entrapment is a common complication. However, trapped nerve or not, the right iliac region has a number of nerves that run through them, two of which are directly responsible for pain signals originating from? You guessed it! The thighs.
Records have been provided by NHS Fife prior to the surgery, they have been provided after the date of that surgery, but the records from that surgery from admission to hospital and right through to discharge have been surgically removed (no pun intended).
Only one line opining in my medical records mentions pre-2006 and my childhood. I was always described as a child as having balance issues, there’s no need to overcomplicate things for a child. However, it seems that in my 15-year medical fight, not a single doctor actually looked back properly at those records, because if they had, the last 15 years of my life could have been very different.
There are a number of conditions such as ADHD, dyslexia etc which are classified as brain-based disorders.
This surgeon knows me personally. As many of you know, I sometimes speak loudly, sometimes I cannot hear people when they speak at the first point of contact and they have to repeat things. My short term memory is terrible but my long term memory is stellar. I can identify a movie from less than 10 seconds of sound. I tend to wear headphones and listen to music to tune out annoying sounds. I wear baggy clothes because I find tighter fitting ones uncomfortable on my skin. I can’t hear certain tones. I sit cross-legged in order to balance. Sensitivity to light.
As a child, I had to learn to balance properly. When you walk, you feel like you are walking straight up and down, for me I had to learn to walk slightly off-kilter and keep doing it until it became second nature. Doing fine motor tasks for me has always been difficult – but because I had learned to deal with things as a child, it would seem that I have autonomously learned the skills to compensate. And how do you measure that against another person? I do not know what it feels like for you to walk, to run, to swim and to perform daily tasks and you do not know what it feels like for me. My normal is different from your normal. The fact that tasks are a lot harder for me is my normal. How could I possibly know that my normal is different from yours?
But it would appear this is the case, only the “professionals” failed to notice.
As part of the course I was required to complete for surgery which I was denied on a technicality, two members of staff were tasked with “evaluating” me for after-surgery lifestyle changes. The process is pro-forma, and so it would seem are the staff members. Because if you happen to be different in any way, it seems they lack the capacity to evaluate that.
It has been opined by my surgeon friend that since I was born, I have been suffering from dyspraxia or a similar brain-based motor disorder. Put simply it is a disorder that often includes increased and overwhelming stimulus from the senses, touch, smell, taste, sight etc are all overstimulated. Your central nervous system cant filter out the normal garbage like other people can. This is similar to autism, in that it overwhelms the person.
Treatment is usually cognitive behavioural therapy etc. There’s even a treatment called equine therapy (horse riding). These disorders often have a bleed over into others like OCD, ADHD etc.
The system being overwhelmed by extranious information, the person has to learn how to overcome it. Of course, as a child when it was opined I had balance issues, the technology and medicine just wasn’t there. Nowadays, a play hard approach is adopted.
For myself, when I was a kid, I used to get specialised sports classes. The Primary school I transferred to was brilliant. They literally turned over the entire gym hall to myself and a nurse and I was given multiple sessions a week. Although funny to consider now, I actually turned out to be quite the gymnast. My first love though was martial arts, specifically karate. I was the youngest first dan black belt in Scotland at one point, at only age 12. Play hard was simply a product of my upbringing. I was already doing the things that would be recommended for children nowadays. And this, the surgeon opines, might very well have been my downfall for the last 15 years. The doctors at NHS Fife were so consumed with sticking me into neat little boxes, with no open mind as to the root cause of my issues.
I just want you to read the opinion of a doctor writing to the DWP in 2015 about what she personally experienced between 2009 – 2011. I’ve redacted her name so she doesn’t face a backlash.
This opinion is pretty damning of the health board, but it becomes even more damaging when you realise that as part of the course I was required to take for the surgery I was denied, it included a clinical psychologist, the first port of call for any suspected diagnosis of dyspraxia or other similar illness. Despite being in the room with me for more than 9 hours, she failed to see the symptoms, the reason is that she failed to review my notes.
As for the dietician in the room, well these type of disorders also affect metabolism and the immune system. Despite the fact she was specifically requested to look into issues about my metabolism, she too failed.
They were both tasked to properly assess the patient, but failed.
4 years of an investigation by the SPSO ensued, 2 years to investigate and 2 years of non-compliance by NHS Fife. The first part of that non-compliance down to Dr. Seonaid McCallum and Dr Christopher McKenna (the Medical Director of NHS Fife) – and if you read this Mr. McKenna and see fit to take this up a level, by all means, do so. I have zero fear of action from Mr McKenna for defamation because he should never have been involved in the process at all. Truth is a defence, and he shouldn’t be allowed to hold a spatula, let alone a hypodermic needle.
He had informed consent explicitly withdrawn from me. You see, he was also involved (as was Ms McCallum) in that whole mess between 2018 and 2019 whereby my mother was diagnoses with cancer, refused surgery, the fight for 5 months to get a proper second opinion, and when eventually delivered, it transpired the surgery was unnecessary because NHS Fife had misdiagnosed her with cancer.
Dr, Seonaid McCallum was tasked to investigate those matters by the board, but it also seems that a month after the discovery of the misdiagnosis of cancer for my mother (which by the way included false representation of her clinical status to NHS Lothian resulting in them missing the misdiagnosis in Dec 2018, a full 5 months before it was discovered) she was tasked by Mr. McKenna to write the referral to? You guessed it! NHS Lothian. Which she did, and missed half of my information out of that referral, wrong figures, missing medication, missing underlying health issues – all with, in my opinion, the sole objective of having NHS Lothian return a second opinion in line with NHS Fife’s pre-written narrative.
There are records from NHS Lothian which show Mr. McKenna directly interjected in that second opinion. That opinion collapsed, NHS Fife play dumb on why it collapsed – but it collapsed, not just because of missing information but because NHS Fife failed to disclose to the SPSO that NHS Fife and NHS Lothian services merged 3 months prior to their ruling. In other words, NHS Fife sent the referral to themselves!
The referral was so bad, and the conduct of NHS so bad the SPSO wrote to them herself.
And so NHS Fife continued to fail at delivering the second opinion – the SPSO, realising how long this had been on their books decided to accept a seriously deficient opinion (based on the same substandard referral as the first one), which I should state NHS Fife deliberately did not tell me where it was going so I couldn’t write to the hospital with all my records. Mr. McKenna’s name comes up in that exchange as well. Stating that phone calls were made, no notations though.
But the long and short of it is, that because of the situation with my mother, Mr. McKenna was advised, in writing that he was to have no more to do with our family. He was threatened with legal action – which any doctor will tell you is an immediate call to their union defence lawyer and more than a small indication of a conflict of interest. It would seem that the medical director of NHS Fife had his nose out of joint with respect to the embarrassment caused by that whole misdiagnosis of cancer thing with my mother, and decided to stick it to me by other means when he was under no uncertain illusion of the consequences of his actions – hence why I have zero issues in naming him in this article. This is the medical director of NHS Fife explicitly acting with relation to a patient when informed consent is explicitly withdrawn. I despair at the next patient that comes across this man. There was another member of staff who had consent explicitly withdrawn and continued to act. She’s now been reported to the GMC. Her name is Donna Hughes and she’s the head of NHS Fife Patient Relations.
As for the central legal office, a government department that represents NHS Fife, well they are just as bad as their clients it would seem. It is noted in communications to the SPSO (likely by Ms Hughes but her name is redacted) that the CLO advised them to simply sign emails with a generic “NHS Fife Patient Relations” in order to hide her identity. That’s a legal department paid for by your tax money being told to hide their names so a registered nurse who is head of patient relations can continue to act against the informed consent of a patient and interject in matters which she has been told to stay out of.
The long story short is that this has all led to legal action and in that legal action different points have been picked out by medical staff assisting me. Notations that are missing have been noted, and all of the above-noted issues, combined with my current balance issues and previous as a child has led to the opinion of a brain-based disorder like dyspraxia or similar – and this is no means just a “possible” now. Empirical evidence is appearing.
You see, with children who have ADHD or another brain-based disorder where processing overwhelming information is prevalent, the solution is to introduce CNS (central nervous system) stimulants. This increases the speed at which the CNS operates allowing the child to process the information faster and the CNS to communicate better. This has a calming effect on ADHD patients.
Because NHS Fife failed consistently over the past 15 years, the original medications I was put on by the doctor in the letter above (which was intended only as a bandaid until NHS Fife got its finger out of its backside) has been added to over the years. Most of those medications are CNS depressants. That is to say, they do the opposite of CNS stimulants. What I needed was freeflow of information in the brain, what I got was a dam being erected by slowing down my CNS.
Simply put, all of the skills I taught myself over more than a decade were slowly stripped from me a piece at a time. In one communication, it was suggested I ridiculed a technique called mindedness (as part of the case before the court) but now that there is good evidence of what is actually wrong with me, the only way I could have coped all of these years is by learning that very technique for myself. The same people later opined it was “scepticism” but that bit is not mentioned in the court papers, because the so-called “ridicule” is just a blatant attempt to try and hide their own liability by trying to make me out as non-compliant. However, I have not told them what has been found yet, they’re going to learn it from this article just like you – history repeating it would seem. Just like misdiagnosis my mother.
The inability to process information led to more medication which in turn led to more issues with being able to process information. A downward spiral, all because NHS Fife was incapable of looking at the big picture and had compounded faulty information over more than a decade. There is no system to catch such things in NHS Fife, compounded error. The referral system is fully reliant on faith that a doctor will record everything accurately, and faith by the receiving doctor asked to opine, that they have been given everything – basically it looks as if I have been poisoned over a decade long period because the doctors at NHS Fife were too busy playing Chinese whispers. Add in a bit of good old malfeasant and violating patient rights by ignoring informed consent and you’ve got yourself a shitstorm in a teacup.
So where my evidence that this recent opinion is right? Well! Over the past number of weeks, the doctor has slowly weaned me off of opioids (without informing NHS Fife) that I have been on for over a decade, keeping me on the one medication proven to have a positive net effect on dyspraxics and others with similar conditions. Guess what? No increase in pain in my legs, but one thing has occurred. Imagine for a moment all of your senses have been blunted, but because those senses were always more acute than others, your baseline is higher than others, so you present as reasonably normal, although inside it’s like your brain has concrete in it. Imagine living 15 years of your senses being in black and white and then one day, someone just switched them back to colour. Not just colour but high definition!
I am currently dealing with an overwhelming adjustment. All of my senses are turned up to 11. It is absolutely terrifying. But in amongst that, I can actually remember this is how I used to be. It was taken from me due to the negligence of doctors. Unfortunately, the physical damage seems to remain and NHS Fife will be finding out about this shortly. Referrals have been made outside of NHS Fife to investigate and I want to put it on the public record – IF NHS FIFE TRIES TO INTERVENE, PARTICULARLY THOSE NAMED ABOVE, I WON’T JUST BE DISCUSSING IT WITH THE SHERIFF AS DELIBERATE INTERFERENCE IN MEDICAL TREATMENT WITHOUT CONSENT – I’LL BE CALLING THE POLICE.
Right now, I face an uphill battle, but the person I was 15 years ago seems to be emerging again. I’m going to have to learn how to be me again – and now my fight for the remedial treatment I need to fix the damage caused by those who simply couldn’t be bothered to properly assess and read my medical records. I make no apologies for my comments in this article, I will not retract a single word. As far as I am concerned this has been a long time coming, and with this new information, which should have been picked up 15 years ago, I’m hoping that I can now get a semblance of normality.
It seems this court case, in the search to decipher medical terminology, has given me lemons – the question is what to do with them.