So many people have shared stories of bewilderment and shock at the NHS's inability to diagnose and rehabilitate people with TBI.
The strategy for ABI was set up in 2021 to investigate this as one of the problems.
It seems the funding has been awarded to solve this issue.
It will probably take 5 years or more before you see any changes though.
ukri.org/news/research-plat...
Richard
Well done for highlighting this research funding. Its about time TBI was taken more seriously and whilst the committee are obviously very high level, those of us who have real life experience and are survivors do, I feel, have some merit in contributing if they require that or how we have coped. Maybe your Masters thesis will be beneficial to them too?
Keep us updated on further progress.
Only if others wrote from personal experience as well, maybe. The voice of the direct TBI experience is missing from the research and apparently the doctors have been the experts! Blah!
At least William Stewart is on the research board so it will go radical, he's been slagging the system off for years and calling for a total shift of paradigm to the neurofunctional model.
Bit late for me because I went down this road and recovered most of my functioning already, but it will be good for others in the future.
I think your very experience of recovery is invaluable. You will be able to express your insights in a way that will sit with the expectations of specialists. I suspect that ABI and TBI is treated as symptoms of a condition, rather than addressing the whole person.
You should follow this site and keep up with the latest press releases.
Some interesting projects come up.
Thanks for sharing. Note this seems to incorporate people with TBI who are already in the system, not those of us who are still stuck at GP level and presumably scores of people who may well be outside the system completely given the lack of awareness of impacts. Still, good news nonetheless.
If you are at GP level you are in the system
Good morning all
Forgive me for being absolutely unimpressed - £9½ million in these times is just pissing in the wind. Billions are sprayed in all directions every day by very rich people, pretty average companies and desperate governments/politicians.
I think you said pinkvision that you did your course and got your education because you realised nobody was going to do it for you. Pots and kettles?
Best wishes
Michael
£9.5 million just to come up with a realistic plan is a staggering amount of money.
It will take billions to change the working system.
So, what if rich people, companies and desperate politicians spend billions every day!
Until the system changes I'm afraid the only option you've got is to do it yourself. If I didn't I'd probably be sitting about being unimpressed with life and winging.
I'm winging everything and whingeing about nothing, just the way it is.
Sorry, but for me they may as well spend that money going to the pub, it would probably help more people if they did.
Best wishes
Michael
Really positive news Richard. Many thanks for letting us know. Is there any way to participate in this? I write a log of my day, with a note of how I am, and what I did. Maybe that would help them decide on setting up a realistic scope and magniture scale of how bad someone's injuries are, and the effect on their cognition and other functions. How open are they do you think to being contacted? Have you contacted them?
That would have been done in the consultation period
gov.uk/government/calls-for...
I don't think people's personal experiences will have much to do with anything at the end of the day. No one has ever taken people with brain injury seriously.
It's like that joke they put in medical publications.
- patient goes to see the doctor
Dr. "what's the problem?"
Patient, "no one ever listens to me"
Dr. " next please"
The consultation closed in early june 2022. That was just about 7-8 weeks after my accident - so i was not really aware of which way was up. But yes, that is when they would have taken note of what someone had to say. I didn't connect the two things - basic failure of joined up thinking.
If you have written a log and have got your medical records and any evidence of other issues such a legal problems etc and of course the thing you found really beneficial you could write an autoethnography, ie personal experience within a societal context backed up with peer reviewed research. You could get it published.
Here's some examples
Shankar, S. (2018). An autoethnography about recovering awareness following brain injury: Is my truth valid?. Qualitative Inquiry, 24(1), 56-69.
Gombay, N., & Andrews, G. J. (2021). Living with embodied vibrations: Sensory experiences following a traumatic brain injury. Social Science & Medicine, 284, 114233.
Brown, A., Barth, D. C., & Leslie, A. R. (2024). “You’re Someone Different Now”: An Autoethnography on Identity and Occupational Identity Disruption After Traumatic Brain Injury. The American Journal of Occupational Therapy, 78(2), 7802180110.
More and more are creeping into the literature but the numbers are still very low, still the more stories that surface the greater the awareness and influence on medical thinking.
An autoethnography . . . Not sure I am up for that just now. Going through a phase of barely coping. Quite a lot of ordinary work has crept back in of late.
What kind of research, peer reviewed or otherwise? Will look at these papers and talk to the family.
Many thanks for signposting this.
That's brilliant news.
Having one central point of information will mean people can build and progress rather than reinvent the wheel each time can't they.
Hopefully it will also bring about more awareness in the medical community.
I had a lorry crush my car, ended up with one primary head injury in the right side, two secondary impacts on the face and back of head. I was put into an induced coma for a day or so to protect my brain, and was in the ICU for a further week before being moved down to the High dependency ward. Much less than lots of people on here, but enough that you think at least one person in the hospital would have mentioned the words TBI to me or someone in my family?! We finally learned about it 3 months later after a very, very difficult time when I genuinely thought I was going insane with all the TBI symptoms.
Hopefully a central, known source of info, will promote more basic awareness in the medical community as well as provide a jumping point for future developments. Very good news.
By comparison my injuries were minimal. However the TBI symptoms were there in force. . . And yet there was not a single mention of the term TBI or Post Concussion Syndrome by anyone. A cousin of mine, whose husband is a doctor said that her eldest son has had a really bad concussion - and has developed long term symptoms exactly like mine. He'd come home from college because he couldn't recall basic things like lecture times, and was tired all the time. That's when it occurred to me that this is exactly what had happened to me. I thought it was just me going potty.
Even now, nobody has used the expression... My GP said that she could send me to a chronic fatigue unit, and they'd tell me that I must pace myself. Well, I had better pace myself !
I do. Yes, this is a really good bit of news.
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