recently after having an extended spell of feeling particularly unhappy I went to my Doctor. I’m over 20 years with a TBI. I got a referral to the local mental health team. Eventually got a first appointment with some counselling. I primarily went to please my wife that I was getting help. The nature of the counselling, together with the counsellor and their demeanour, made me realise that it would not benefit me.
Subsequently I saw the coordinator again . They seemed agitated that I had not found the help useful. I told them that i felt I needed to see a neuropsychologist or neuropsychiatrist as they would have the experience to help me.
This coordinator asked me who I thought these people were……
This person appeared to have no idea that such professionals existed.
I was amazed.
I was told that no such thing existed in the NHS and that I should seek private support.
I was left with the impression that I had overstepped some boundary for failing to find the counselling offered useful.
I just want to state ….. anyone or any institution who is studying / where studies into neuroscience in relation to long term brain injury are taking place, I need you as much as you need to talk with me.
Please hook me up asap…….
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Steveau
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Hi Steve, as a retired mental health nurse I agree with you, I was referred to the community mental health team 10 years ago, at which point they couldn't help. 10 years on, and been with the neuro team, albeit briefly, and various other services, I have ended up back with the community mental health team, this time,they are eager to engage. I have pointed out to them the numerous assessments and care plans that have gone before, all they seem determined to ignore. At the moment I am on a waiting list and only have contact once a month. I get the impression that they are going to hold on to me this time regardless of them being able to make a positive impact.
My husband had his TBI nearly 11 years ago - we’ve just had to go private to a Neurologist after shocking NHS service through our GP. He has had new scans which luckily show no further development than the initial damage (still looks scary on a scan!) however he had wanted to he’s someone re tests etc for a long time but there’s just no help out there. The neither saw has now referred him to one of his colleagues but he’s on a waiting list so who knows how long that will take. He always says he’d love to be involved in research:tests to help research so if you get anywhere with Ki vs please let us know.
I feel the same. There has to be people in research who would benefit from having access to us. To talk to us. I am pretty sure that like me, most TBI hide their issues and try to fit in . In the long term this has had an increasingly detrimental effect on me. When you seek help from the NHS it’s difficult to find understanding. Anyone doing research would be a great route certainly.
If you hear from anyone or anything out there please let us know and we’ll try the same - apologies for my initial message, I didn’t proofread it before sending.
I live in Canada so things may or may not be different in the UK.
I have tried to find counselling a number of times, even with someone who had brain injury experience.
What I have found is that professionals are very much conditioned by both the training they received - or didn't receive - and by previous clients - who may have different symptoms that you do.
I did have a neuro psychiatrist for a while and I would say they were a stabilizing influence, and also were able to send me for tests to rule this and that out. Theybwere also really helpful where other professionals and insurance were involved , because their professional opinion mattered.
It's true that some of us may benefit from drugs - with someone who knows how to be careful with them. The brain injured tend to be sensitive to medications and also , since your various pathways may be damaged -.Or you hypopituitary may be ( controls digestion, thyroid, heart, etc) -.medications may not work as intended.
Meaning, you may need to find someone who can help you sort that out first - ie hormones and digestion. You may need an alternative practioner for that, which can be hard to afford.
The thing is, keep looking, don't give up. And don't discount the basics like decent food and eating habits, sleep, and mild exercise, etc. They do make a big difference.
There is also lots of info on coping strategies.
Please check with Headway for their advice. They know what resources are available there. Keep trying til you find helpful things.
hi I was a mental health support worker , I also worked with a guy do 24 hour shifts and a hairdresser .. . All of my work life 40 + year has been around people and the later bit was with head injuries and mental health health .. all pre TBI .. my early life was very difficult also from which I had various forms of of counselling , some good and some not so good .. this counselling has helped me live my life and deal with the horrible times that I couldn’t have dealt with with as well as I have .. it’s not a cure it just helps you personally deal with anything in a more positive way .
I have had counselling with my husband this year as this has help us understand the new me .. and to me something I hadn’t thought about was the grieving for the old me .. it did help massively for both of us .
I’ve gone private where I can as Cornwall has no Neuro and am still struggling but am slowly getting answers which has helped a massive amount .
Lately is started Headspace App which was recommended by the private neauro Physio which has very quickly helped my anxiety and I feel like I’ve found my OFF BUTTON ..
Every thing you’ve said is true is true .. the NHS is beyond poor with rehab on Head injuries . But please don’t give up as some councillors are good as it dosbt matter why you are struggling or your wife . Look for a different councillors .. and try Headpsace or any other type of meditation .. it’s great to be able to relax even our wonky brain ( that’s what I call mine )
I was lucky enough to have remembered the old me and I had learnt from work and my personal life and have used this to get me though the last four years ..
The last 12 months + has been hell and about getting out of the denial I was living in .. but of late I feel like u have turned a corner and this was also at the same time as starting the headspace App .. is this what has helped me I don’t actually know but it could be 🙂 .. this is ridiculously long but I do get and understand everything you have written .. good luck and keep fighting .. Sue 🙂
I’m sorry you haven’t had a good experience. In my area, in order to get a referral to neuropsychology, you need to see a neurologist who will refer you - once they’ve checked on scans etc for any ‘hardware’ problems i.e. lesions on the brain and making sure there’s nothing to address there with any surgery or procedure. If not, they then refer to neuropsychology to check for the ‘software’ problems, ie disruption to the neural pathways affecting cognition, behaviour etc (hardware and software their terminology by the way, helpful for me as I used to work in IT project management…).
I personally have had a very good experience with the NHS Talking Therapies service but this has been while I’ve been on the waiting list for the neuropsychology service, which is completely separate to the local NHS Talking Therapies service. So, always with the knowledge, I think on both sides, that this was a band aid until I see neuropsych. Because they simply just don’t have the answers about specific brain injury consequences. They DO have other useful therapies that can and do help with symptoms, like EMDR and CBT (which may feature later with the neuropsychologists but after the lengthy assessments that they are famous for, of course).
A long way of saying, ask your GP to refer you to the neurologist with the view to getting referred onto neuropsychology (for me, they are part of the ‘Health Psychology’ team). That’s if you have in your area, that is, as I know some members don’t have in their area. But there is also the right to choose in the NHS, so you may be able to go outside your area.
I’m sure the Talking Therapies team are just as frustrated as you, that you are looking for help that they can’t provide. But I think it’s worth remembering that they aren’t specifically trained in brain injury (as so many other NHS medics aren’t, or very limited training) so are working to the best of their capabilities and personal skill sets, with the aim to help as many of the population as possible with more common and generic conditions.
Hope you get the help you’re looking for soon. But be aware waiting times for NHS neuropsych are generally very lengthy, and now I imagine private too as more people turn to that option.
I agree with trees. But you should also make a formal complaint abt whoever said there was no such thing as a neuropsych in the NHS.
It's v important in all medical encounters to write down the name of any medicsl staff you speak with. Not in an aggressive way - you can send compliments into the nhs as well as complaints - I do. But we need to take more control to improve the system at all.
whereabouts are you . I saw a neurologist at southmead in Bristol (UK) then neuro psychs regularly at the Rosa burden centre also in southmead hospital in Bristol.
It's awful, isn't it? You're vaguely aware of the help you need but the medical/psych crew just don't get it. I stood at Addenbrookes reception, wearing my hidden disability lanyard, and burst into tears because I was so overwhelmed by the people around me. What did they do? Got three large security blokes to escort me off the premises.
Cambridge has neuropsychology, but I have to hang up on them when they call. They call with no warning and ask complicated questions. Then post me weird packages of paperwork to fill in for 'fatigue management'. One of the kids they got to phone me laughed at all my responses. He thought I was joking when I told him what I was going through.
This has turned into a long rant from me. My private therapist has done a great job despite no BI experience.
But as usual, it very difficult for us to get any medical support anywhere.
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Relationships after TBI
was fired over my tbi/pcs.
TBI after Moto Cross accident.
no jackpot more drama
tbi
