Has anyone had trouble with the neuropsychologist cognition assessment not really feeling correct for post concussion syndrome.
The test seems more focused for those with moderate or severe TBI.
I’ve received quite a dismissive letter from occupational health saying my occ health practical tests do not match with the neuropsychologist assessment.
my argument is my issues are not being able to sit quietly and told instructions to repeat e.g. 5 animal names etc which is why this test was ok, although I think they done it wrong as because I get mental fatigue the test was done in two sessions. But you wouldn’t run a marathon and pause your time to take a rest before starting again.
I failed the practical tests but they said it was strange that I had deteriorated for the second assessment. First test was to put together a rowing machine in the house. Maybe 4 to 5 steps and just screws. 4 pieces to our together. Instructions said it should take 30 minutes but it took me 2 hours.
I had rested a lot before the test.
second test was done 4 months later. I asked for their hardest test so I could see where I was at. This was a test two different bake to cakes. During this time my wife had just started cancer treatment and had also broke her ankle so was in. Wheelchair. Looking after them meant I was constantly triggering my symptoms or sleeping. It was extremely difficult.
There letter stated they couldn’t understand why I was so bad the second time and my recovery was not what they would expect for mTBI.
im now worried this will impact my sick note for work, impact my income protection insurance and my case against the drunk driver who is pleading guilty to all four charges at crown court.
i was head of finance reporting to the managing director for a large company whose parent reports to the stock exchange. My premorbid state was set as average which I disagreed with but they just ignored all of my concerns.
Not sure if I should leave this but it just feels completely incompetent and I’ve already had the drunk driver ruin my life since the crash last year and now I have a battle with the nhs.
thanks
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HI JuventiniGetting messed around when you have tbi or mtbi or PCS is not at all unusual.
I would contact Headway for advice.
I don't live in the UK, I am in Canada. And I imagine the game is more or less the same. That is , the game of insurance etc not wanting to give support and a lot of docs not quite getting Brian injury.
Ask if you can see a neuro psychiatrist - as a specialist doctor they have more clout than people who are not mds.
The Ot you saw is an idiot because with brain injury people have variable days and also the injury can be very task specific - depends on your injury.
Also, when you go for testing and assessment don't rest up first. They need to see your worst not your best day. (I am assuming here if you don't rest, somewhere between getting yourself there and starting you'll be close to your worst or there soon enough.)
It's hard as we want to do well on tests but in this case it gives them a false idea of your ability.
And, in court etc doc report trumps all others.
If you don't know who to see and Headway doesn't, I suggest calling a personal injury lawyer and asking which doc(s) you should go see.
Some always are in favour of insurance and are highly skeptical and some are patient centered and will write a report accordingly.
Thanks, I was resting before all appointments as it was difficult to do them but now I wish I had of just tried to have as normal of a day possible beforehand.
I’m seeing the solicitors neurologist next month so hopefully once I show them everything they will be more understanding
I think you definitely follow this up with Headway and also possibly your GP.
My sister has a tbi and was referred to a neuropsychologist and it wasn’t a particularly good experience. At the time she was also suffering from depression and ptsd and the neuropsychologist was quite helpful for that. But she just didn’t seem to understand the impact of the tbi which made my sisters situation worse. We ended up writing back and challenging the statements made in her discharge letter. The GP was supportive and understood my sisters position.
As for the occupational therapist tests you have gone through - that is bizarre as you were under a lot of stress at the time and that has a very bad effect on someone recovering from post concussion- maybe the OT wasn’t familiar with post concussion syndrome?
Do follow it up with Headway for advice . Good luck
Yeah it’s hard when other things are happening. They were trying to blame my wife’s treatment for just making me stressed.
The occ health are aware of post concussion syndrome as when we were waiting for my mri results they mentioned it.
They have just not taken a holistic view of everything and just thought as time progresses people should improve. Where for me, my life got harder with everything that had to be done so my symptoms were constantly triggered. For the first five months my wife only had 8 sessions of radiotherapy. Then the period occ health say they cannot understand why I was worse we had to travel 3.5 hours on a train to London, with a wheeelchair, mostly stayed over a night and then travelled back 3.5 hours.
Then you have to go to the local hospital for temperatures to ensure no infection from the treatments so sometimes I would be asleep and then would have to drive to the hospital and not get back until 2-4am so it was just extremely hard.
It’s just really stressful thinking a drunk driver put me in this position, and then after having treatment with the head injuries until for vestibular issues their occ health team are so dismissive even though they knew everything I was dealing with.
I have since gone private as I think I could have POTS or autonomic system dysfunction so hopefully someone can pin point the exact issue and why as my mri was clear.
Drunk driver was doing between 50-60mph when he hit my side of the car, then spun 180 degrees and the car stopped instantly in the bush so lots brain bouncing around, I can remember the impact but not how I got into the bush, when I came around I was just struggling to breath with pain in my lungs.
Ask the lawyer to send you to a neuro psychiatrist. They can do a clinical diagnosis of brain injury and be believed in court. A neuro psychiatrist has an MD, a psychiatric degree, and a degree on brains. So if he says you have a brain injury it will be treated as such.
The neuro psychologist is not an MD so her word doesn't have as much weight.
Neurologlists may say you have FND and that can be blamed on other things. Though maybe it is different there. Here FND is considered a psychological issue and just another name for conversion disorder .
From what I understand neurologists can't do the psychiatric vs bi distinction because they aren't psychiatrists.
A lot of people with brain injury have a clean mri.
I agree with the others on here. They should know about variable abilities on different days and should also know that real world and protected environment with rest will be different too. Distractions and time pressures and previous fatigue levels all impact
I had one such set of tests (I don’t yet know the outcome) but I do know that they asked a whole bunch of gêner knowledge questions at the end so they could accurately determine my pre-injury baseline. They cannot assume what you were capable of and should take some time determining that.
It’s a blunt tool at the best of times. If they are using it against you then you have grounds to fight it but maybe they are using it to try and help find something that you can do that might mean support from them regarding your future and possibly different work?
I don’t recall what they asked except for some brief job info. I don’t think at the time I was really aware as to why so was brief thinking I would save energy for the test. But I did try to advise on multiple occasions since but was just ignored. My solicitor wasn’t worried as it was clearly wrong but I hadn’t realise they would use it against me at a later date.
I only got the letter on Friday so will let my solicitor know tomorrow. It’s hard to deal with things and before I was patient and methodical but now I just go off on one with tunnel vision and can’t let go so been constantly thinking about all weekend.
Hopefully whoever has done your test has been more in depth and thoughtful.
I was getting vestibular physio from Oct 2023 to May 2024. Some months were just doing the exercises at home. Occ health came out November/December 2023 and then May 2024. So they were helping but at one point they did say there was nothing else they could do and “for their numbers” they had to close off and discharge.
The only reason I got this dismissive letter was because I asked for the assessment result from May as they had never given me anything and this is what they said. Reading again, I’m not sure if I’ve overreacted. I still stand by them not taking everything into account but maybe it’s not as negative as I first thought.
It's quite weird that they seem to be saying that your difficulties don't fit with MTBI and that your MRI was clear. But it's perfectly normal for an MRI to be clear after an MTBI. Every brain injury trajectory is different. It does sound like it's more a budgeting/ political decision to sign you off from the OT service, which doesn't help you unfortunately.
Have you seen your report from the neuropsychologist? They seem to be saying here that no cognitive problems were identified?
What sort of symptoms and difficulties are you having?
The neuropsychology tests tend to go really fast, they don't really give you time to think.
Well the last face to face meeting we had the said the words “so for our numbers” and the “well not for our numbers but we’ve done everything” or something along those lines, first quote is word for word.
I had essentially been discharged. All I asked them for was the test score of the last test which is completely different to the letter received.
Attached is my cognitive test report. I think this was also done incorrectly, I don’t the test in two separate sessions each 1.5 hours as I advised them I couldn’t last 3 hours due to mental fatigue.
In the report I’ve just seen they mention some low scores possibly due to fatigue towards the end, so if I had of done the assssment all in one go like you should my result would be far worse as towards the end my brain would have completely shut down and I would have had to give up.
My premorbid state is also incorrect. I’m the number one in finance reporting to the MD for a £200m multi national company, I did sit on the board of trustees for a local charity and was part of the future business leaders committee representing our company to government, I was 37 when the crash happened, essentially doing the role as FD but when the FD became MD I took in the responsibilities and salary etc but never changed job title as they remained the only legal director. The group company has 14n employees and turnover is 14 billion with me owning the balance sheet, audit, tax, compliance, working capital amongst others.
I disagree with the assessment initially but was ignored.
My symptoms have reduced significantly as they were constant or triggered very quickly in the past. But I still have dizzyness, gazed eye sight, light and noise sensitivity, cognition issues with problem solving, memory issues, tinnitus, easily distracted etc also easily irritated and get tunnel vision and rather than just thinking to be annoyed I feel it through my body and skin, it’s a weird feeling.
Well the report does say that your executive function isn't where it should be, and executive function/ working memory does affect everything we do - particularly if our work has been particularly complex and demanding. I sympathise. The annoying part in both reports is them stating that MTBI blows over in a year, and it really doesn't in every case. My neuropsychiatrist explained that some of the problem with these arbitrary dates is that there is just a dearth of long term research on MTBI duration. The problem is that studies have historically not looked beyond five years.
I wonder if your local trust is totally complying with the latest legislation on brain injury? This is when I wish pinkvision was still on the forum because he had the details on this exactly.
I can research, I’m still off work and I just can’t get this out of my head and I do think it needs reviewed considering so many others could possibly face the same issue.
I replied with some research I did find on how it can last longer than a year. I also wonder are stats based on discharge rather than what is actually happening with people just living with the issues as the help is hard to find.
I also forgot that I saw another consultant who they referred me to for ongoing issues who said two years was more likely. But I saw them after I had been discharged from occ health.
Below was part of my reply to them:
⁃ Only 67% recovered in first year. Each additional symptom reduces recovery by 20%. If it lasts over 3 years they don’t recover pubmed.ncbi.nlm.nih.gov/277...
I remember finding the same or similar research papers. It's incredibly painful and frustrating to continually be told that MTBI clears up in three months when your own symptoms are most definitely not doing so - or then be put into the 'functional' disorder category. I still find it difficult to process the conclusions on the bulk of the older literature on this. My first neurologist, even if he felt at a loss with trying to treat my constant headache, did at least write to the income protection insurers to say that the trajectory of every brain injury is different, and could not be predicted. I suppose that it's very convenient for the insurers and trusts, to insist that it should all be resolved in three months. But given that there are very few players in the income protection market, particularly those that provide workplace schemes, they must have more than one case on their books post the three months mark, and indeed over the year. I would have dropped off everyone's radar at the two year mark when the office let me go - at which point I stopped needing to go to the GP for sick certificates. My privately funded therapy stopped in the end as a combination of not being able to fund it myself for very long, and the Covid lockdown starting, and my realisation which I discussed with the team helping me, that just getting into London for appointments was keeping me in a weekly boom and bust fatigue pattern (it was basically taking me all week to recover from the appointment days). I made huge strides forward as a result of getting help though and still saw significant improvements, even if they were more spaced out, after the three year mark.
Look for stuff on vestibular and ocular motor issues, and the research by John Leddy in the States at Buffalo university re exercise and autonomic nervous system. (Buffalo treadmill protocol) for things that might help you.
I use AI quite a lot as it means I don’t have to try and think of what to search and where. The legislation was a good hint for me to ask the question. This was their reply. I know AI is 100% but it tends to give me a good starting point.
The analysis in the occupational therapist’s letter raises several concerns regarding whether it aligns with best practices and current guidelines for managing and assessing mild traumatic brain injury (mTBI) in the NHS or other healthcare settings. Based on available UK guidelines, including those from the National Institute for Health and Care Excellence (NICE) and broader clinical frameworks, there are several potential shortcomings in the letter’s analysis:
Key Issues with the Letter Compared to Best Practices
1. Failure to Consider Persistent Post-Concussion Syndrome (PPCS):
• Guideline: NICE guidelines (Head injury: assessment and early management, NG41, updated September 2019) acknowledge that some individuals with mTBI may experience persistent symptoms for months or even years, a condition often referred to as post-concussion syndrome or PPCS.
• Letter’s Shortcoming: The letter seems to dismiss the patient’s ongoing and deteriorating symptoms on the grounds that they do not align with the expected recovery trajectory of mTBI. However, persistent symptoms are well-documented in clinical literature, and this dismissal could reflect a failure to acknowledge the variability in recovery times for mTBI patients.
2. Inadequate Explanation of the Patient’s Symptoms:
• Guideline: Persistent cognitive, emotional, and physical impairments after mTBI should be explored using a multidisciplinary approach. Symptoms such as fatigue, cognitive dysfunction, and emotional dysregulation are common in PPCS and often require input from neurology, neuropsychology, and occupational therapy teams.
• Letter’s Shortcoming: The letter concludes that the patient’s presentation cannot be explained by mTBI without exploring other possible contributing factors (e.g., secondary brain injury, psychosocial stressors, or exacerbation of symptoms due to mental fatigue). This lack of thorough explanation or alternative hypotheses may indicate incomplete clinical reasoning.
3. Dismissal of Real-World Functioning Challenges:
• Guideline: NHS assessments of cognitive impairments after mTBI should reflect the patient’s real-world functionality, including their ability to handle complex tasks and cope with fatigue or sensory overload. Guidelines emphasize that testing in quiet, structured environments often does not capture the challenges experienced in everyday life.
• Letter’s Shortcoming: The letter compares the PRPP assessments with neuropsychological results without adequately addressing the differences between real-world and controlled environments. This comparison overlooks the significant role of fatigue and environmental stressors in the patient’s performance, which is a key consideration for assessing cognitive impairments in mTBI patients.
4. Focus on MRI Results:
• Guideline: NICE and other guidelines emphasize that normal imaging results, such as MRI or CT scans, do not exclude significant functional impairments in mTBI patients. Persistent symptoms are often due to subtle microstructural changes (e.g., diffuse axonal injury) that may not be visible on standard imaging.
• Letter’s Shortcoming: The letter heavily relies on the MRI findings to question the patient’s cognitive difficulties, stating that no sequelae were found. This reliance on imaging is contrary to established guidelines, which caution against dismissing symptoms based on unremarkable scans.
5. Dismissal Without Multidisciplinary Input:
• Guideline: The NHS often emphasizes the importance of multidisciplinary teams (MDTs) in managing complex cases such as PPCS. MDTs include neurologists, neuropsychologists, occupational therapists, and mental health professionals to ensure a holistic approach.
• Letter’s Shortcoming: The letter appears to represent a singular perspective and does not indicate consultation with other specialists. A more robust evaluation, incorporating MDT input, would strengthen the conclusions.
6. Inadequate Consideration of Mental Fatigue and Cognitive Load:
• Guideline: Both NICE and international mTBI guidelines stress the importance of considering mental fatigue and cognitive load during assessments. Fatigue can significantly impair task performance, particularly in individuals with PPCS.
• Letter’s Shortcoming: The letter fails to adequately account for the impact of mental fatigue, which likely explains the deterioration in performance observed during occupational assessments.
Does the Letter Meet NHS Standards?
Based on these issues, the analysis in the letter does not appear to fully align with NHS best practices or clinical guidelines for mTBI management and assessment. The following gaps are especially concerning:
• Dismissal of persistent symptoms without exploring alternative explanations or conducting further investigations.
• Over-reliance on imaging results, contrary to guidelines that recognize normal MRI findings do not negate functional impairments.
• Inadequate integration of real-world functionality and fatigue into the assessment.
Potential Legal and Clinical Implications
1. For Clinical Care:
• The patient may not be receiving appropriate care or referrals for their ongoing symptoms, such as cognitive rehabilitation or management of mental fatigue. A clearer multidisciplinary plan is needed.
Recommendations
1. Multidisciplinary Review:
• The patient should undergo a comprehensive assessment involving neurology, neuropsychology, and occupational therapy, with input from fatigue management specialists.
2. Challenge the Letter’s Conclusions:
• Emphasize that persistent symptoms are recognized in mTBI cases and that normal imaging findings do not rule out impairments. This is supported by NICE guidelines and broader clinical evidence.
3. Highlight Real-World Impairments:
• Evidence from occupational assessments demonstrating impairments in real-world functioning (where fatigue and stress are factors) should be prioritized over controlled cognitive test results.
4. Advocate for Best Practices:
• Reference NHS guidelines and best practices for mTBI to challenge the dismissal of the patient’s symptoms and ensure their ongoing care is aligned with evidence-based recommendations.
In summary, the letter does not appear to meet current legislation or NHS standards for assessing and managing mTBI, particularly in the context of persistent post-concussion syndrome.
Yeah it’s wiped me out, needed extra baps the last few days. Instantly triggered my tinnitus and pressure around the ears and then when thinking about it and replying to them via email it’s just completely draining.
Dealing with insurance companies and the different assessments is a nightmare. I was lucky in that my firm was funding medical insurance, and the private consultants were very good at writing to the income protection insurers.
Is it worth paying a neuropsychologist privately to interpret the original report you had?
Who are the occupational health working for in your own case?
Currently I’ve only seen and had assessments via the nhs. Next month I see a neurologist visit the solicitor but the solicitor has mentioned getting the cognitive assessment done again.
The nhs said I had a mTBI and supported with the vestibular therapy which is why this letter through me off.
I saw a
Ophthalmologist privately who said eyes and optic nerve looked fine. Private optometrist confirmed the vestibular issues.
Because my issues are similar to those with autonomic system dysfunction I’m seeing a specialist in February.
My GP was very good with the referrals so I could then organise them privately.
For my solicitor, the defendant only agreed physio for my whip lash and dislocated shoulder etc and occupational therapy but declined the cognitive therapy which is what led me to ask the nhs for my assessment result to show how I failed the test and need cognitive support.
Everything just takes so long as my crash was August 2023 and it feels like I’ve made no progress since June time so thought I just need to go private and rule everything out or find something that can then be targeted for recovery.
Do you mind me asking about the autonomic system dysfunction expert please?
I am being assessed for OH (originally thought POTS) because I haven't been able to tolerate exercise or even standing well at all since my injury. But that's all been through my GP - I literally mentioned dysautonomia in a session at my rehab unit today and they said 'most people with minor head injury don't have that' (tbf, my experiences of asking for advice on exercise intolerance on here seem to bear that out - sounds like most people are affected by fatigued but not literal issues with being upright). Just curious as to what service you're seeing.
What is OH? I done a check for POTS using my watch and I didn’t meet the criteria but was close. Think my heart rate changed by 25 and not the required 30. But just walking for 10 minutes my heart rate goes from 60 to 110-120 and I can’t do cardio exercises as soon as my heart goes over 105 my symptoms begin. I asked the GP just for a referral letter so I could go private.
My head injury unit had mention people sometimes have nervous system issues but that was all, so I just went on the forums and seen what other people were getting checked for.
I’ve booked to see Dr Boom Lin at One Welbeck, he’s a cardiologist but specialises in autonomic nervous system dysfunction.
The nhs aren’t providing me any support now and I can’t accept this is how I will be so have to look myself.
I am started private occ health next week via the solicitor but everything is taking ages on that side and still no cognitive therapy agreed.
I just have to be doing something in terms of recovery to keep the hope alive
I'm similar - GP thought it was POTS (I did a NASA Lean test at home but couldn't tolerate standing up for long enough to get helpful results). I was then referred to the diagnostic cardiology service at my local hospital and had various tests. I sense I'm lucky that they do know about this stuff. They think more likely orthostatic hypotension, which basically means blood pressure dropping rather than HR increasing when you're upright. Another form of dysautonomia and affects you similarly to POTS. My HR also goes up but not quite enough, and apparently it then went down again after a few minutes (the hospital test was the only time I've been able to stand long enough to find out, and that was under duress!).
Of course it's hard to always tell what's that my body doesn't tolerate exercise/standing due to that, and what's just fatigue sapping away all my strength. It can be two things!
I am trying a version of a gentle rehabilitative exercise programme called CHOP, which is designed to help with POTS/OH - if you do have it, it might be worth asking about that. Caveat that if you also have fatigue / PEM (like a lot of us do!) you may need to do stuff at a more gentle rate. Basically it's starting with very gentle recumbent exercise (eg recumbent bike or rower) and some seated/lying down exercises to strengthen your legs and core - rather than exercising upright at first when it just triggers symptoms.
Obviously I don't know what's going on with you so take all of this with a pinch of salt!
That’s good info, thanks! Last week the GP said my blood pressure dropped when I stood up. They had be so another blood pressure check today and said it was fine.
I’ll ask the consultant in February to check.
I tried to go on a child swing with my nephew and felt instantly sick, after the crash last year I couldn’t walk across a bridge as it made me sick, even now lifts make me feel sick but not like they did the first few months. Fast movement makes me dizzy, not fast, just quicker than slow pace, moving from low to high and left to right swinging my head is bad.
Do you have PCS and is it recent? I think if I had done these tests in the first few months the results would be far
Different. When going for a walk at first I would feel travel sick and it happened upon standing.
I will start to monitor my heart rate dropping, I only thought it increasing was bad so not paid any attention to decreases.
So they could be a few things at play here - obviously do get proper medical advice on this.
You could ask about orthostatic hypotension - I would expect that they would need to measure your blood pressure over several minutes rather than just once.
The other thing is vestibular issues following a concussion. These are really common and I wouldn't be surprised if the issues you've just described are because of that. I would definitely recommend seeking vestibular physio. I have this through my local NHS brain injury rehab unit but they don't exist everywhere. You could try calling Headway for advice on finding support. You can ask to speak to a nurse.
My PCS is one year and one day old today, but people's symptoms vary so much, and even one person's fluctuate from day to day, due to things like fatigue, stress and menstrual cycle, so comparison with others only gets you so far.
Hi, I asked my local rehab unit why we don't have neuropsychology support. They told me that they've deliberately only offered the service for moderate and severe brain injuries because with minor head injury your symptoms are likely to improve / change to some degree. I can't speak for how well it works for PCS as I've obviously not had it. I do think there is a big difference between those who've had PCS for a long time versus those in the early months though, and I'm not sure the healthcare system acknowledges this difference.
My fitness age, VO2 max calculated on my watch before the crash was age 20, now my fitness age has changed to 44. Something is definitely happening as it changed very quickly
Vestibular physio was the first thing the head unit support with. Currently stuck on the brock string exercises. Been on YouTube and the exercises I’ve done are all the beginner but been told there is nothing else now. Online there intermediate and advanced which I have tried and they make me feel sick.
I’ve been discharged by nhs now, so relying on my solicitor to sort the rest now.
The blood pressure check wasn’t good. I basically planned my day just to be there for 2
Seconds for them to check it once and I was sitting down, but now I remember my issue was when standing.
For PCS, I wonder if there are levels. Just thinking, some might have 5% diffuse axons damaged, some 10% etc and this is why some may have it worse than others
I have improved a lot, just no where near my normal and still can’t have a normal day. I can have hours where I can get through but then suffer afterwards and nothing is easy. Everything is a huge effort, dealing with eye issues is hard. The fatigue is bad but it’s not constant, and I might not have fatigue but then struggle with eye strain and gazed site so it makes doing anything hard. Then the fatigue hits after!
That’s without trying to use my brain for anything.
My crash was August 2023, so it’s been hard to keep battling everyday
I have read a lot of what your replies are saying, but struggling to take in all of the conversations .. 🥴( the joys of TBI ) but what has come to my mind is they don’t relate what you can do know to what you could do before … this has to be recognised to relate to your changes .. i have thought this about myself as u feel like im living with two brains , the old one says yes and the new one fails .. but I know lots of people didn’t do the things i did pre accident so how can a result be found if this evidence isn’t looked at .. Sue 🤔
Yes, exactly that - now I see I have two consciousnesses, one the old identity, which is analytical, talks away thinking just as it always did, and seems surprised by the new problems. Then secondly a sort of subconscious brain which is silent and really struggling, and quite emotional. The second brain clearly knows stuff it hasn't passed on to the first brain. Sometimes it gives hints.
I am thinking of giving them names. Hmmm. The subconscious is probably Eve.
Sometimes, once I’ve reacted I notice how different it is to my normal reaction. It’s strange as in the moment, even though I know I’m different I just feel how I feel then and everything else doesn’t matter.
It’s not until everything calms down I then realise. Sometimes it’s easier but sometimes it’s just uncontrollable.
has anyone had a successful PALS complaint? The occ health therapist just relied to say we have opposing views and I should contact PALS if I want to complain
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Post concussion syndrome..CBD oil?
neuropsychologist assessment.
Post Concussion Syndrome?
Post Concussion Syndrome
