The current recommended standards for diagnosing TBI are to have a CT scan of the head and the cervical spine, a Glasgow Coma Scale assessment should be conducted and Hypopituitary tests done. ALL HEAD INJURY sufferers are to be taken to hospital.
A negative CT scan and GCS of 15 does not mean you do not have a brain injury. If you have hypopituitary dysfunctions and have not been tested, they are misdiagnosed as mental health disorders or menopausal effects.
Nice have recognized that there is a distinct lack of research into 'concussion' 'mTBI' 'PCS' and have recommended further research to develop diagnostic protocols because currently there are none.
Nice have recommended intensive rehabilitation programs to include physical, cognitive, spinal and nerve conduction.
However, the expert panel could not identify what this should entail because there have been no research or studies into rehabilitation methods and techniques.
The current model includes mental health and good living recommendations (anti-depressants, nerve inhibitors), psychological therapy and healthy eating without any advice on active rehabilitation.
If you are hoping for rehab you may want to look beyond the NHS because currently, they don't offer any. Psychological therapy and treatment for mental health conditions is not rehab!
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pinkvision
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Hi, great to see changes have finally happened. Although sad newsboys the rehab.
I had my tbi nearly 25 years ago and the care simply wasn't there. I wasn't in a coma but was very nonsensical and verbal. I was given x rays a sick bowl and " monitored" , though little evidence.
I was then advised to self discharge myself due to being disruptive. My verbal skills were noiseless and shouts , I could remain upright let alone walk.
This was all documented on my NHS file as I have no recall of my first year. Rehab was never talked of until my gp hounded them.
I suppose some reform is better than none , but in 25 years this seems very little has improved.
It's more like 40 years because the recommendations for a CT scan and for using the GCS were developed in the 1980's; the only new thing is the Hypopituitary test but that's hit and miss depending on the person.
In my notes it said I had a low Glasgow score due to being verbal ( although slured and not making sense). Due possibly to being under the influence of alcohol. Which is strange as it includes my blood test that were clear and showed no signs of alcohol.
No ct scan was done until around 3 months post rta along with a mri which showed damage to the front , right and rear of my brain along with possible damage to the brain stem.
Thanks for posting this update. Interested in Hypopituitary test. Update: my incident was last April and the hospital with the neuro-psychologists, NHS St George's, have refused my referral. Do you know where to find private neuro-psychologists or TBI physiotherapists that don't cost the Earth? I'm in London, but I'm willing to travel or do sessions virtually. Thanks again for contributing to this community.
They all cost the earth unfortunately and you will have to go to multiple providers depending on what they offer. I think a full package will cost upwards of £30k. The weird thing is that most of these neuro/physio/psychological techniques you could do yourself.
I went to YouTube and found multiple methods and just tried them and they worked.
It's about belief, positivity and the will to keep going.
Wow. That's insane, I would never expect to be that expensive. If you get a heart transplant the less than that. How bizarre. I'll take the links to the YouTube videos! Ha ha! Amazing.
Thanks for the book suggestion, already got something really useful for. I read a chapter from the Clark book. Seems like he had a much more serious issue than me. But reading his technique to form complex ideas or just remembering the names and number of children he has, that was quite a useful system to refresh thinking if it starts getting distracted or a "daemon" (Emotion), comes along to distract and derail the process and prevent refreshing.
I've got a lot of thinking to do to finish my PhD, so I might try Clark's refresh technique because I lose my train of thought constantly due to memory loss. This is the help I'm looking for from a therapist. Maybe I will have to do a lot of reading and be my own therapist. Dreams returning will help with memory. Head still feels like a potato. Watching videos now. Thanks!!
It's pretty disgusting that you are being effectively refused healthcare. We still (although probably not for much longer) have a free at the point of use system here.
Go back and insist your referred for a CT under neurology or even ENT as its all interconnected. Try a different hospital through your gp surgery. I don't understand why your referral was refused, absolute madness.
Glad some progress is happening even if at a snails pace
(also see Kester J Nedd’s views on GCS assessment being not a fully adequate method of assessing TBI etc (his book Concussion and Traumatic Brain Injury gives an alternative more comprehensive method).
So there is research and information even if it means looking to the US for answers. NICE clearly havent done their research properly.
Same with my doc. He recommended clinical psychology eighteen months ago warning the referral may take time. A year later I told him I had heard nothing. He was shocked and promised to sort.
This month I had a message from his practice (where he is senior partner) to say there would now be no referral and he hasnt seen me for six months. Obviously he can diagnose remotely or by forgetting about a patient but I suspect money has more to do with it.
I am now having to pursue this further and my neuro advised avoid stress!
Yep, and everyone knows it too, it's not even recognized legally, but still it continues because no alternatives have been developed yet! NICE recommendation: further research is needed!
Thank you for posting this I was not offered re hab, despite having many referrals to neurology after tbi. But I had a lot of help for my back 2 years after rta from nhs and my back got better. I don't always read the posts as screen use makes headaches worse. Thank you for posting about nice .
Once nhs added on head injury page that thermoregulation is a possible problem after headinjury, but what is on the nhs headinury pages changes on internet. I have always been warmer since tbi compared to before tbi. There was a guardian article about an Olympic hockey player that I thought was good about needing better protocol after a tbi, she wrote she has a headinury and headaches and finds outdoor light better than artifical ight
Hi Amber, unfortunately visual sensory processing and light sensitivity is not taken seriously at all and not considered for proper testing (other than the obligatory eyesight test) or treatment. It's a bit odd because 45% of primary brain functions are governed by visual information.
unbelievable that they have no idea about TBI / concussion 😢 … thank you for sharing this as it really highlights all of our issues with the NHS .. if your about to die or injury that is life threatening they are all there doing what’s right to keep you alive …. Then nothing if you can breath alone , sort of walk alone and talk ( even if what your say is wrong in my case ) Glasgow score 14 in my case yet I don’t know where I was , gave wrong info on the amount of children I had and had no idea that one of the nurses was a old school friend who I still keep in touch with .. and no one could visit as it was COVID time😢… unsure how you can do a Glasgow score if someone isn’t there to say if what your saying is true … I have no memory of a week … as far as the hypopitury test I have never heard of it ( and can spell it ) certainly explains why 3 years later I’m still struggling but at last a GP has listened to me and is doing tests and contacting Nuro .. I have had contact with Heady the guys that are putting together a App for concussion injuries they are hoping the NHS will use it for rehab .. the guy doing this have posted on here for help in understanding head injuries which I have done and so have others and guess what we are all giving mostly the same issues 🧐 .. let’s hope things will change in the future .. Sue 😊
sorry second reply !! Just spoke to hubby and showed him this post .. he said with the want for electric cars /bikes etc which are silent , the head injury rate will increase with people stepping out in front of them .. shame they don’t actually listen to the people who have survived head injury as the answers are here for them to know and understand the complexity … Sue 🫤
You've just hit on another point, there is absolutely no research from a brain injury sufferers point of view, none at all. In other words no one ever listens to someone with a brain injury because they are not considered to be capable of having a point of view. Many other medical conditions have patient input into the diagnosis/treatment and ongoing care process.
I just don’t understand … because you recover enough to live and your not in need of having support staff , they prosume your ok … how so wrong they are 😢 I know they have no idea hw you will recover or how long this will take but a closed door is as far away from what we actually need .. a scary life changing thing with little to no medical care … appalling and totally unacceptable 😢😢😢
The strange thing is, solutions to diagnostics and rehab have already been developed in the private sector. The sports industry is a prime example of this, have you ever wondered how top flight American football and rugby players get concussions yet they are back on the pitch playing after a year or so. It's because there is a different system of diagnosis and realistic rehabilitation is intensively applied.
One of the big problems in changing medical policy is the fact that change only comes about after research involving multiple randomized control trials. The problem with this is that you can't conduct randomized control trials with people with brain injuries. This has been known since 2013.
NICE might want to consider talking with Kester J Nedd. DO. He is a board certified neurologist with over 30 years experience with over 250,000 patient encounters with brain injury patients. He developed the "Brain Hierarchical Evaluation and Treatment" BHET method that he uses to treat his patients. He has also written a book "Concussion Traumatic Brain Injury From Head to Tail" (over 600 pages) where he details the BHET method as well as addresses many issues related to these patients and how to address the varied situations.
I'm surprised how narrow or limited the authoritative boards and organizations seem to be on so many things and especially about this issue. Do these professionals not talk to one another. I'm no doctor, but I'm finding this stuff, without even looking too hard.
the concussion rehab with sort is no different then with anyone with concussion .. the Heady group which are in the process of doing a App to cover concussion rehab are very much hoping that the NHs will take this with them as rehab .. please excuse me for not remembering their names but they have been work with concussion and have also treated someone in here ( thank god I remember some of it ) .. although concussion ans all head injuries so very a lot they also have very many similarities which could be used to help improve recovery .. they treat cancer with chemo , radiation ans other meds but they don’t alway know what the out come will be . So with out actual trying to do something they will never improve .. it really does have to actually start !!!! Sue 🧐
Hi Sue, yes, Dr Theo Farley is part of Heady, and he treated me ( I was referred to him by my neurologist). I was in an awful state before being treated by him. The physio, exercises, work on my neck, graded exercise based on Leddy's work in the States, and the coaching on handling fatigue from him made a vast difference to me. I was very fortunate to be referred to him.
Hi I couldn’t remember who had seen him before .. let’s hope the nhs gets onboard with the app they are putting together as he does seem to understand concussion . So please to hear you improved with his help .. Sue x
Yes, he made a lot of difference, my recovery had absolutely stalled at around the six month mark, before I got to see him. He'd got interested in concussion because of the injuries to young sportspeople, and so he specialised - and lectures in a London college as well.
Yeah I’m really interested in this app that they are developing … I’m 3 years in and going backwards with my leg weakness 🫤 after improving so well it’s very frustrating to develop more pain .. along with memory issues I’m happy to try anything .. not the usual positive self at the mo as I truly don’t know how to improve just waiting for mRI to start off the waiting game over again .. and if that is negative more mri and waiting again .. what has happened to our NHS Sue x
Interesting. I went to A&E with concussion less than two months ago and wasn't offered a CT scan (the doctor actually seemed unsure but decided against it). After ten hours in hospital, the vast majority of it on my own, obviously, well, concussed, I was in no position to argue or question, and in fact noone seemed to think I'd be that bad as I'd made it two days before the symptoms came on. So who are these guidelines actually going to?!
The guidelines are just that, guidelines; they don't have to be implemented. In the UK as you know Health matters are controlled by the devolved nations. Each of these implement their own policies. To make matters worse, each Health authority have their own guidelines, then each A&E within those Authorities have their guidelines, then each head of team within those A&E's have their interpretation of the hospital policy.
There are at least 102 variations and 20% have no guidelines at all.
It comes down to poor management, poorly trained doctors and is blamed on a lack of funding.
In my health authority paramedics at the scene of an accident won't take you to A&E unless you are unconscious or can see broken bones or blood. If you are in a car crash they will not take you to A&E if you get out of the car by yourself.
At A&E you can only get a CT scan if you have been referred by your GP, they don't carry out any other assessment.
It's all a bit of a lottery really which just makes NICE a talking shop.
They should send it to the politicians, managers and doctors instead because members of the public would know something was wrong by common sense.
As you are only two months in, the best option for you would be to make an official complaint to your health authority to explain what happened and point out that the NICE guidelines were not followed. They should then do a CT scan, do a GCS retrospective assessment and importantly do blood tests for hypopituitary dysfunctions.
I found complaining got me everything including a neuropsychology assessment. Go for it, you have nothing to lose. If they won't do it, then say you will go to your MP and they will crap themselves and you'll get the VIP treatment.
Thank you. If the GCS thing is where you are assessed for alertness etc that happened; what is the pituitary one please? My GP has since referred me for various bloods so don't know if that's that. Thanks for taking time for reply.
Reading that has just cemented my self diagnosis of endocrine/pituitary dysfunction. I suffered TBI bk in 2018 and ever since suffered long periods in what I call 'the dead zone'. I was under outpatient care after discharge from hospital and received neurology, ENT (vertigo) and neurophysiology treatment till discharge approximately 1.5yrs ago. Not once did anyone explore the possibility that I could have a serious issue with my hormones, despite presenting with symptoms constantly.
Last year I started to display systems of perimenopause and it was only very recently, from searching desperately for answers, did I start to think that my endochrine system could be damaged following my TBI.
My age (46) helped to confuse the situation as all that the GP's wanted to explore is that I'm on the change. I even had to fight for that. It may well be that I'm in the perimenopause but my specific symptoms are related to regularity and flow (sorry) and I don't seem to be suffering the 'classic" symptoms that are common.
I think my endocrine system is goosed and for five years has been completely ignored as a possible reason for my debilitating symptoms. 😡
I have, just recently pushed my gp to refer me to endocrinology (again they were annoyingly reluctant to) and have my first appointment in March. I may finally be on the right road to gaining some semblance of a life back. 🥳
I'm so happy I'm finally going to get some answers and a better understanding of my condition, however I've lost 5yrs of my life already and that upsets me.
Why is brain injury so underfunded and desperately under reaseched? It's a massive statistical burden, not only on the individual but on society.
Hi Tinks, the hypopituitary test is a blood test and you'll know the results in five days or so. You might also want to get tested for vitamin B12 levels while you're at it because some people on here have posted they had B12 deficiency. Let everyone know what happens with your test in case it may help others get tested.
If everyone took a printed copy of the NICE guidelines to their GP's and said "this is what's mean't to happen" it would save some time and distress.
Unfortunately, the current working system is obsessed with mental health conditions and the menopause as excuses for brain injury symptoms.
I've had a few fasting blood test at my gp, and they came bk slightly anemic but nothing else.
My condition is really odd. It's like my body is capable of producing/communicating properly but it's unable to sustain it and once it starts, im plunged into the 'dead zone' for months on end. The time in them has been getting lengthier year on year. My concern is nothing will show abnormal on the day. I have a page of symptoms and such to talk about though so would they be able to give a diagnosis from that?
That's good, I have had a pretty bad experience with the NHS. Thankfully my head injury was only minor, otherwise I'd have been in trouble. Here's my timeline, it's a bit long winded and I don't mean to complain. It's a tough job and I certainly couldn't do it.At A+E when I had my accident my head injury was ignored and they just glued my finger and sent me away. 2 days later back to A+E was told "you have a concussion, go home" 2 days later rang my GP with dizziness, sickness and vision problems. Told all ok, ring back In a week if not better. Rang back again in a week. Told same, ring back in a month if not better. Had to go to hospital GP for anti sickness medicine. Rang GP after a month said I had to go A+E for CT scan. A+E wouldn't do CT scan so GP booked one (2 months after accident) CT scan working diagnostic "Post concussion syndrome" (had no idea what this was, never heard of it before this day) Saw GP again referred to neurology, which was declined. Told to ring back after a year if not better. Contacted CPFT about mood changes, diagnosed depression and anxiety.They told me I should push to see a neurologist. First Neurology appointment 19 months after accident was a 10 minute phone call, they sent me for an MRI scan and blood tests. Had 2 more 10 minute phone calls 6 months apart. Also had a phone call with neuropsychology. Now been discharged by neurology, they wrote I am "uncooperative" (they were cross I wasn't answering questions fast enough). And refered back to my GP for a mental health assessment. (31 months later)
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Advice for services/rehab
YAAAAAY Some good news at last
Returning to work, did it work?
Post Concussion Syndrome?
