"Systemic Refusal to any post Traumatic Brain Injury care."

My issues have been going on for 36 years, however, the last 3 in particular, now that I'm fully aware of the root cause and condition of my health issue, my experience has been Kafkaesque at best.

In 1984 as a teenager I sustained a Traumatic Brain Injury after falling into an uncovered streetworks excavation on a dark night, while returning home from an errand. The result was an operation to treat an Extradural Haematoma 48 hours later, having spent this time deteriorating in an A&E ward. Physically on the surface I appeared to have made a fully recovery, however, I experienced severe fatigue, headaches and sensory issues. My concentration was poor, as was my ability to retain new information. Not ideal for a teenager about to start university. After approaching my GP with my parents, I was accused of malingering and my parents were informed that all that was required was that I needed a "good shake".

Roll forward a few years after having failed university and mental health problems have came into my life in addition to the aforementioned sequelae. At every juncture with mental health services I asked if the roots of my problem lay with the TBI. At every juncture I was given a diagnosis from psychosis to GAD, OCD, or depression.

Roll forward to 2016 and I'm about to commence my third stay in as many years at a private sector psychiatric hospital after yet another breakdown and a head full of suicidal ideation. At this point the consultant psychiatrist decided to consider that there may be an organic root to my decades long mental health issues which had been, despite my best efforts, remaining unresolved. Again the TBI wasn't considered, this time it was the possibility of an ASD. One year after obtaining a GP referreral to Autism Scotland my name came up on the list for an assessment, which I had in March 2017. The Psychology team at Autism Scotland concluded that I did not meet the criteria for an ASD diagnosis, however it appeared I was suffering from issues in my pre-frontal cortex as a result of my TBI. This was confirmed in August 2017 by a private sector Clinical Psychologist with decades of experience in the field of Brain Injury.

At his suggestion my wife approached NHS Lanarkshire for assistance, only to be refused. No other mental health support was forthcoming and after yet another episode of a breakdown and suicidal ideation I spent October 2017 in a private sector Psychiatric Hospital.

I began seeing the private sector Clinical Psychologist in January 2018 and began identifying the myriad of issues that a person faces after a TBI; the headaches; the concentration; the memory problems; the challenges to my executive function; emotional dysregulation and lability; speech issues and the FATIGUE!-my nemesis; every day is a lottery as to whether I will have enough energy to carry out the basic functions that comprise my eroded daily life.  The Clinical Psychologist made it clear that additional support would be required from the NHS if I was to gain a daily existence that bore any resemblance to 'normal daily daily living'. None of this was forthcoming. I subsequently spent February 2019 again back in a private sector Psychiatric Hospital with exactly the same mental health issues and by that time we had moved home to the NHS Forth Valley area.

Since first having my long standing suspicions that my health issues were related to my TBI confirmed in 2017, my wife and I have carried out extensive research both online (and there are many peer reviewed scientific and medical papers on the subject) and with the help of the Headway Scotland charity. There is a great deal of easily accessible information out there. It begs the question; why has nobody I have encountered in the health profession with the exception of a Professor at Autism Scotland and the private sector Clinical Psychologist I have been attending been privvy to this extensive information?

In August 2019, in a moment of utter despair, I swallowed every tablet I have in the desperate hope of ending my pain and sheer trauma. I was taken to A&E and when it was established that I had not taken enough tablets to ensure the lethality I so desperately sought, I was discharged. On visiting my GP a few days later I was referred to Forth Valley mental health services. Two months later after some further calls from my GP, I received my first home visit from two Occupational Therapists. During this visit, I gave my account of the last 35 years of living with a TBI. A few days later I received a letter with what looked like a Christmas list; I would receive OT input in order to help me with my now defunct daily living skills; I would undergo a CT scan to assess my neurological health; I would receive a full Neuro-Psychological assessment; and I would be appointed a Psychiatrist.

Thus far, bearing in mind that the letter I received was in October 2019, the following commitments have been fulfilled:

1. I have received 3 visits from an OT.

2. I have had a CT scan in November 2019 however, the results have never been discussed with me other than the brief comment "your brain injury is quite obvious on the CT scan".

3. I have had one Psychiatric appointment in November 2019 where the problem with my current medication; I have been on since its prescription at the private sector Psychiatric Hospital in October 2017 was discussed owing to its lack of SMC approval. No other issues were discussed other than that I would undergo regular Psychiatric appointments by March 2020 at the very latest. This medication has allowed me a full nights sleep after more than 30 years of chronic insomnia. I have been found wanting after 30 years of a BNF full of a myriad of pschotropic medication; from the chemical cosh of Chlorpromazine in the 90's, to Tricyclics, to SSRIs of every flavour. I currently pay privately for my medication at great expense over and above the private sector psychiatric and psychological treatments I have had since 2012.

In conclusion, has my experience been;

1. Good? ...At no point has it been less than traumatic.

2. What could have been better? ... Everything, or perhaps my parents should have eschewed the Brain Operation in 1984 and allowed me to die.

3. How do I feel about my care? ...What care? At what point will anyone care? Personally, I feel my next point of contact with NHS Scotland will be to become nothing other than an entry in the book of statistics documenting yet another figure in the leading cause of death for men of my age.