This is my first post, since joining a few days ago.
My husband sustained a TBI when he was 17, and had to have surgery to remove a blood clot (extradural hematoma) after a slow bleed to his brain was identified 3 days after the initial accident.
This was back in 1984 and at that time he spent a week recovering from surgery in hospital and was then sent home without any form of rehab or follow up. After a few weeks at home he was encouraged to sit his highers and then a month or two later to take up his place at University. Once his hair grew back he was recovered ‘back to normal’, right!! He could walk and talk so he was better or at least that’s what his family, friends and GP believed.
Needless to say after a few years, university was too much and he was kicked out. This was around the time we first met. I knew he’d had an accident, but knew nothing about brain injury at the time and I too thought he was ‘normal’ apart from a massive scar around his head. We where married in 1992, and in 1993 he had his first breakdown. He has struggled since with various difficulties which have always been diagnosed as one mental health problem or another but no-one ever linked them to the brain injury, no GPs, no Psychiatrists, no Psychologists, no CPNs, not even 4 psychiatrists from the priory hospital where he’s been an in patient five times (I have medical insurance through my work)
He suffers from fatigue, insomnia, communication difficulties (can’t follow more than one speaker in a conversation), emotional dysregulation, headaches, crippling overwhelm and anxiety, an inability to make decisions, sensory overload (with smells, and sometimes lights) depression and more. But what he’s been treated for is depression, anxiety and OCD (as he’s been trying to get things in an order so he can find them and function - but again that was not connected to his TBI)
Then 3yrs ago after an assessment for Autism by Professor Tommy McKay (a leader in this field) he was advised that while much of his behaviour was similar to someone with Autism, given the brain injury and no clear evidence of similar behaviour as a young child it was not possible to say he has autism and that his difficulties where far more likely to be related to his brain injury.
He then privately found a psychologist 2.5yrs ago who has experience with brain injury, but my husbands issues are now so complex that this is making little difference. He hasn’t worked in 20yrs and has almost completely withdrawn from family life. Spending hundreds of days in bed and not coming out of his room, (time alone is increasing each year). I don’t believe this can be resolved with one psychologist apt every two weeks. Before Covid, the NHS had assigned an occupational therapist, however as like so many others on this forum this resource has been redeployed to somewhere else and that small glimmer of hope has disappeared with it.
Over the last 20years my husband has tried to take his own life several times and can’t see the point of going on when there is no hope of ever finding the support he needs.
I would love to be able to access a Neuro Psychiatrist to get a full assessment from someone who will take the brain injury into account, however here in Scotland there are no Neuro Psychiatrist in private practice and the NHS is unwilling to support this since his brain injury was 36yrs ago.
If anyone can share any ideas or suggestions of where to go or how to access a Neuro Psychiatrist through either the NHS (in Scotland) or privately, please let me know. In addition if you have any other suggestions of where to go for support / treatment for the difficulties my husband has, please feel free to share your experience with me.
I have felt so utterly unable to help this wonderful man who’s life is slipping away before my eyes. I am hopeful since joining this forum that someone else may be able to share something from their experience that might help us.
Thank you