Better treatment of PCS

I was wondering how we, as patients, can campaign for better treatment (or any at all!!!) of post concussion syndrome? From my own experience and reading about others, GPs don't know that there are specialists to refer patients to. We're just told that it will get better, rest and take painkillers.

For my own referral to a neuropsychologist, the NHS waiting list was 16 weeks. Luckily my work will pay for a private appontment. However, my sick pay has run out and I wouldn't be able to survive a further 3 months without pay whilst waiting for treatment.

Who do I write to to highlight this issue? What else can I do to make sure others don't get stuck in a black hole without treatment?

7 Replies

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  • Realistically there isn't much that can be done without mounting a huge campaign. The only thing you can do is write a letter to your MP highlighting local issues.

    Will it change anything - with all the other pressures on the NHS - sadly not

  • Headway does some campaigning, so you may want to email them directly and ask how to get involved. I looked up "brain injury campaign group UK" on Google and found several others. Getting involved in an existing campaign is easier than starting a new one, because the structure, methods and products (leaflets etc) are already there.

    Having said that, it would be great to have a truly grassroots pressure group. If anyone here starts a campaign, I'd be happy to join it. Letters are good - to GPs, hospital boards, MPs, the media etc - and they carry a bit more weight when there's a group behind them. Maybe some crazy publicity stunts, using any media links we have. :)

    I'd also like to put myself forward to design graphics, leaflets and T-shirts as needed. I'm part of the internet-obsessed millennial brigade, and I'm a little turned off by the image of the campaigns I've seen. Big ones are corporate and worthy-looking, small ones are cheesy with badly-designed graphics. I don't want to criticise too much - we're all doing our best, and it's obviously working to some degree. I'd love the opportunity to create an alternative message with the kind of bold, slightly irreverent graphics that my generation and the internet loves.

    Lia

  • Hi Lizum,

    When I looked up treatment for post concussion syndrome I was rather alarmed to see it is now being classed as a 'functional disorder' !

    neurosymptoms.org/#/post-co...

    Sadly, many neurological symptoms are being classed as such these days, on the basis of a 'clear' scan, in spite of other tests/signs being positive. My MRI was 'clear' 2 days into illness, although no contrast was used to highlight inflammation. Bloods and EEG abnormal. I was never offered further tests to find out why I had long term physical and cognitive issues as a result - simply told to live with it, refused physio and signed off. If you are assigned the 'functional' label, as I was after 'suspected brain infection' and subsequent long term effects, you are highly likely to encounter bias, false beliefs, rudeness and anger for being a timewaster from some medical professionals, as many appear to view you as a psychological case rather than neurological, or 'non treatable' and therefore not their problem.

    So I feel you have been very lucky to get the referral to neuropsych - I was never given that chance !

    More recently I had a urine infection, that turned into 2 rounds of hospital treatment for sepsis and sparked what appeared to be an MS type relapse, leaving me with further physical disability.( MS sufferers are among the high risk groups for brain infection as their immune system behaves differently so it was a bit suspicious ! ) The 'functional' label has meant a long punch up with GP's to get referred back to neurology, due to their belief that I must have had all relevant tests and had everything ruled out already, to be diagnosed as 'functional', as per the rules. Simply not the case, rules are not being adhered to and the system these days appears to be geared to signing off patients as quickly as poss under whatever guise, saving money on further tests and treatment.

    I wish you the best of luck with your referral and some improvement from your symptoms soon,

    A rather spleen venting Angela ! : )) x x x

  • Hi Angela

    I like your very interesting reply... early on in my recovery, the first (rubbish) neurologist I saw as a private one who instantly labelled my post concussion syndrome as a functional neurological disorder and told me it would get better on its own. Coupled with the lack of knowledge from my local GPs, dismissal of my symptoms as anxiety, and poor management of my psychotropic medication and prescriptions, it was a bit of a mess frankly and I am sad that I didn't get better help when I needed it most.

    Antidepressants are great in some ways, and they eventually helped for me in the end, but I guess a referral to a neuropsych would have been much better earlier on than a prescription for sertraline, citalopram and diazepam! (*rolls eyes*)

    Nikki

    xxx

  • Hi Nikki,

    I have just galloped through your previous posts - your story is both shocking and saddening. I am wondering if you had a problem getting medical people to 'admit' your movement disorder was the result of drugs rather than 'functional' ? I had a movement disorder myself, after initial stiff neck during suspected Encephalitis. I looked like a one woman band for 6 1/2 weeks - my God it was exhausting ! I was thrown out to outpatient psychology, after clear scan, who didn't know what to do with me and eventually signed me off, as they believed my original issues and resulting long term disability were due to physical illness. I was lucky, as the inflammation died down, so the movements slowed and stopped. Unfortunately I am left with cognitive and motor issues of a different type due to damage that was never screened for or admitted to, after the initial event. MRI is good but not God - many smaller types of damage/evidence of early disease fail to show adequately on a standard scan. Neurologists know this, yet still insist on using it as Gold Standard and are dismissive of symptoms they cannot put a 'picture' to. A visit the the Health unlocked sister website, Functional Neurological Disorder demonstrates many stories of patients with red flag textbook symptoms of recognised neurological damage but negative scan or other test, so left unsupported after being labelled in this way. It used to be that Chronic Fatigue and M.E. were the standard go to ,cover all diagnosis for difficult to diagnose neurological patients - it seems this FND is the new wastebasket to 'lose' problem patients in ! It encompasses every neuro symptom you can possibly think of so they have you well covered !

    You are incredibly unlucky to have had such an adverse drug reaction, I'm so sorry this happened to you.

    Take care, Angela x

  • Hi Angela

    Thank you for your kind reply and for your understanding and kind words. It is a bit of a pain, and a sad story indeed - my psychiatrist said I was 'a sad and interesting case' (!!) so he hit the nail on the head there!

    I actually had the diagnosis of FMD after I had my head injury (and it was really post concussion syndrome), but the severe anxiety and insomnia I was going through led me to be prescribed various psychotropic drugs such as diazapem and sleeping pills etc, along with citalopram that didn't work. My GP was about to call the crisis team as I hadn't slept properly for about 3 weeks and was going onto a near breakdown... so she prescribed the lowest dose of the antipsychotic and said 'don't look up the side effects'... a week of taking them, severe dystonic reactions and awful posturing and back arching/grimacing, then I was told to stop taking them by another GP. My GP wouldn't admit they would be able to cause TD. A month after I stopped taking them, I got the most God-awful grimacing, facial expressions, dystonia, lip smacking, weird clicking tongue noises etc. Then... three neuros later, and a very frustrated me trying to convince everyone I had TD... the final one I saw privately said instantly what it was and said people can get it after only a single dose... and that those types of drugs should never have been prescribed to me as I had a head injury and was predisposed to the condition.

    Meh. Life sucks sometimes. I can't sue as there isn't a case... so when life gives you lemons, I guess I'll make lemonade... :-)

    I'll reply again in a bit as just finishing some work :-)

    xx

  • I am in total despair that any neurologist will ever understand the hell PCS patients suffer

    They have no understanding of the wreckage of lives

    The drugs they throw at it have horrendous side effects

    Do not even mention the utter hell of IV DHE

    As for "worlds leading headache expert " not a shred of help

    LOCAL Headway said she has this now for life !

    just 18 yrs old and her life is ruined thanks to a clown failing to put 2 screws back into a panel of wood over 3 yrs ago

    And as for Insurance Companies there are not enough expletives in my vocabulary