Well, just wanted to vent frustration and despair to people who will truly understand ….
After my GP wrote to try and expedite my neuropsychology assessment, I finally got a letter today from them - the current waiting list in my area is 3 years and 44 weeks for a ‘routine’ assessment.
I knew it was going to be long but that’s something else. I’ve been waiting over a year already so will just keep on waiting?!
There’s been a hard lesson to learn for me, as although my accident was 7 years ago (abroad with no follow-up advice), I just tried to get on with ‘it’ myself for 5 years but failed miserably over and over, and finally went to NHS in Jan 2023.
I’m still trying to fathom why I wouldn’t acknowledge the injury sooner. But it is what it is, I can’t change things, but I want to spread a word to the wise if others are in a similar position - seek help as soon as possible! Don’t wait, like me.
I sincerely hope others do not have such a long wait for these services, or in fact can even access these services at all, as I know some of us don’t even have in our areas.
Once I’ve got my head straight, I’ll be putting in a complaint, merely to highlight the poor service capacity, which the relevant department have basically encouraged both my GP and I to do, to highlight the issue and push it up the agenda. I’ll probably contact my MP too, to highlight the dire need for more neuro- services.
Well, I hope you all keep healthy and happy over the weekend, folks!
Tx
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TreesMTBI
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Hi I completely get your frustration- my husband has been trying to get an appointment but we seem to be in a black hole in Derbyshire with no access to neuropsychological services so possibly will have to go private. I am planning to contact our local MP about this!
I’m sorry to hear that you don’t have any service provision there. So awful that people are having to go private, what about those who can’t fund that. Hope your husband gets the support and help he needs.
hi I fully understand your concerns and frustration. I have an ABI in the form of a cerebral infarction plus multiple TIA’s. A stroke & mini strokes without the disfigurement.It has taken me 8 years and a change of doctors to access speech therapy and an occupational therapist,plus a neuropsyhio.
I have had to be my own advocate to get this far. I have received an apology from my current doctor and occupational therapist saying that I’ve been missed due to this,that and the other
Wow I’m so sorry you’ve had to push for all that yourself and that it’s taken so long (no doubt partly because you’ve not been able to do stuff as quickly and efficiently as a non-injured brain …?!).
At least some individuals have identified the fact you got neglected but doesn’t make up for the way the system is so broken.
Hope you have brighter healthier days ahead with the support you need!
this seems to be a problem is so many parts of the uk .. my accident was known about immediately as I was as taken to hospital in an ambulance . On leaving hospital I got help with my shoulders and ops needed but they had no idea I had torn my hamstring and only check up I had was about my broken neck and the collar I had to ware . This also I had daily visits from district nurses as I kept taking it off 🥴 ..
I’m four years since my accident and have gone private to see a neurologist , have an update MRI , private neuro balance physio and fight with My GP to actually listen to me as a 10 minute appointment just isn’t long enough with multiple injuries .. very long story but I just email my GP know with updates including my sight which is rapidly changing to keep them in the picture .. plus any advice have been given from other places .. that includes asking for blood tests to be done ..
I have contacted my local MP and also to say how bad PIP is for head injuries
Good luck and keep fighting as the system seems to be non existent in the uk ( parts of )
They know that it fractured skull several bleeds on the brain , broke my neck in two places plus body injuries which I was seen regularly about .. they offered little to no help with my head injury except I did see a neuro physio and OT 9 months after I left hospital 🤔 who thought I was doing all that they could do as u had worked with a guy that had brain damage prior to my accident .. and that i possibly had spasticity in my leg … this was found out the be a torn hamstring which was found out about 2 years after my accident as I kept asking to have it scanned 🤔
My letter definitely said years too. In my case I guess I might no longer need the services by the time they get round to it, but good god, it would have been nice. Mad that being unable to work or live properly for a number of years is acceptable in the NHS, but these waits seem to exist on so many fronts.
It is so frustrating, Trees.Do keep in mind that people with bi are not aware of a lot of the issues and only are so after some healing - in your case, the 5 year mark.
Please try to not scold yourself. There was literally no way for you to know sooner.
If the medical system was more on the ball they would have known. But they were busy missing things like hamstring injuries? Sadly this is also true.
In my case I had a sideways tear in a tendon in my arm that was missed. The nerved in that area were numb or something, I think I had a partial dislocation they also missed as I remember when I awkwardly fell and there was an very loud sound and pain and then somethings worked better though that arm hurt like h e double hockey sticks.
It seems rye usual clinical hints for many injuries are also out of whack for us.
Oh, the doctor did send me for cortisone shots for the shoulder at some point, it was bend over and howl type pain. The waiting list was so long by the time my spot came up it had healed enough that I didn't need it.
The medical system seems to understand they let us down tettibly, but the depth of their ineffectiveness is likely also unknown and who knows of they will make it better or worse.
Certainly putting people on an antidepressant as a best practice horrified me. For some of us that is absolutely the wrong thing to do.
It is a long long haul.
Hang in there. You are still healing despite them...( Humour. Dark.)
I am aware that an added reason for the size of this backlog is down to the huge volume of people with neurological issues from long Covid. Neuropsychology teams simply aren't geared for this level of increased demand, and, given how long it takes to train people for this role it's unlikely to ease any time soon. Add to this the lack of will (cash) to scale up these services as this would be an admission that there is actually a massive problem of undiagnosed neurological issues post pandemic.
The test battery will only be of limited value as without a pre-injury set of scores to compare with, the assessment cannot measure any deficit in your own cognitive profile.
I've had two tests 18 months apart and there are measurable deficits in performance, however, there are few if any useful treatments that can fully address these. Advice given to me was to do some crosswords!
There is one web based service that has a degree of credibility and doesn't cost a fortune to access
BrainHQ.com
I paid for a years access after doing the daily free test for a while. The problem I have found though is that some of the exercises can leave me quite exhausted for a few hours afterwards.
Cognitive rehabilitation is a very underserved function. Our very own pinkvision is doing some very groundbreaking work to address this so you could do a lot worse than check out his YouTube channel.
Waiting around for the NHS to give you a diagnosis and little or no effective treatment is only going to leave you feeling even more frustrated.
I contacted Chris Bryant MP asking for an update on the Governments brain injury strategy. Advised he has moved to another department. Next thought was to ask my local MP but as pretty much usual I forgot & this is reminding me.
Really frustrating for you, Trees. I have just heard from the Brain Injury Team, who help with post concussion as well - Next November is when they will see me, they say.
SO Variable. They have written to me with a set of things to do, in the mean time. Would it be helpful if I were to post this note as a pdf on this forum?
Mine in 2017 though that was only assessment and some rehabilitation after which I think took a year or so even then, like you I came back to the system, some 5 years after my accident with some help from the local Headway branch in what to ask for and so on.
Sadly I’m not surprised as well the NHS has in real terms had its funding cut over last decade or so.
The waiting times on the NHS are really something else unfortunately.
I waited just over 4 years to be assessed after the neurologist dismissing my issues as “just” PCS. Thankfully de rehabilitation medicine doctor referred me for neuropsychological testing.
2 and a bit years in I received a letter saying that I had been taken off the waiting list as I had been on there for so long. I had to ask the rehabilitation doctor to refer me again.
Last year I finally did the testing and the results corresponded with certain things that were seen on the MRI and were noted by the radiologist as needing more investigation. ( but dismissed by the neurologist ) Turns out that “just” PCS was in fact a more substantial brain injury. Getting any/more support after those results is a different story.
Frustrating as it is, hang in there and don’t let them take you off the waiting list.
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You can recover from PCS. My recovery journey may inspire you; it is now listed on a science search engine Google Scholar. 
Still waiting.
