Just wondering?

Dangerously a thought has occurred to me and I find myself wondering whether there is a postcode lottery in terms of provision for brain injuries or does willingness/determination play a bigger role given the budget restraints in the NHS?

2 years after my bi I found out that I was expected to have "locked in syndrome" because of the nature and location of my injury.

It was only after my first MRI some 3'months after my accident when I was teaching myself to talk again that I was asked what I wanted. Speech Therapy please!

4 months later I got speech therapy and, from that, a referral to neuropsychology which led to Occupational Therapy and Neurophysiotherapy.

I have been discharged from both: one with a fully open door and just a phone call if I need them and the other with a letter to give to GP to get a referral.

Anyone got any ideas?

Lovenhugs to all


21 Replies

  • Definitely a postcode lottery here in South Wales. If we moved 10 miles to the next health authority then we would have access to the Community Brain Injury Team along with neuropsychologists etc. etc. After 11 years we have had access to none of that and it is only Headway that have provided any help, support and information over the years.

  • Yes Morriston and Cardiff hospitals are the only Hospitals with a Neuro teams and they are 50 miles apart. The Morriston team have to cover an area of around 10,000 square miles with just a handful of people.

  • Possible always will be the case.

    Had problems getting diagnosed as a lot was put down to depression. No one seemed in the first year to be able to give s definate full diagnosis.

    They agree I had sustained a bi but not the extent.

    Then a year later I lost my father and I must admit plunged into a deep depression. This seemed then to become my new diagnosis.

    Whilst seeing a counseller she began questioning my recent past. After seeing some of my medical reports wondered why I hadnt been having treatment for my bi.

    I was then told it wss now to late for treatment as they imposed a year cut of post bi. Because I was initially diagnosed

    with a bi I was past the treatment date.

    I was lucky ( I keep telling myself this) that I had a claim against someone for the rta I was in. This meant that I could have private medical care to be paid for by the claim.

    This was not local and involved a lot of traveling over three years plus it took my claim value but the treatment I recieved was great.

    My recovery has been great although not complete. If my bi had not involved a vlaim I dread what state I would be in.

    Sorry gor long post Pax.

  • Hi Pax

    Looking on the bright side you could have had a different type of accident with no possibility to claim. So.........difficult as life may be at times (like airports) it could have been a lot worse.

    Happy hols


  • Hi Random

    I know I was lucky with it being a rta. Didnt feel like it at the time or for awhile after.

    I am also lucky that I had a determind ( stuborn ?) wife as well.

    Reeeeeaaally not looking forward to airport but I suppose I will end up relying on a "happy" pill. A small price for a holiday.

    I may even try and post while away. Just to make you all envious.....I am good like that.

    Thanks again I'll do as I am told and enjoy the hol.

    Pax xx

  • I think it is a postcode lottery. I was lucky enough to be referred to the community neuro rehabilitation team, where I received intensive psychological and occupational therapy support, but the psychologist explained to me that I am very lucky to live somewhere that has this team. I do not know where I would be now if I had managed without them, and I worry for people who do not have access to such support.


  • Hi amvamp

    Do you think it would be worth setting up a separate post or something where we could put the practical advice and tips that have helped us lucky ones so that others can see them?



  • this is such a very good idea.

  • I think that's a brilliant idea. That's why I joined this forum..to be able to give some advice and support people with problems that I really understand. I have no idea how to set up a thread, but let's do it!!

    x x x

  • OK and if its OK with everyone I think I'll call it Tips and advice.

    Here goes and so you can start your own there is a red box on the top right of the page where the posts are listed. Just click on it. Enter title in the first box. Write your thoughts in the second box and then there are drop down boxes just select whichever is relevant and finally submit.

    Job done



  • I think it might be a combination of both- I know I'm lucky to be within 20 miles of a hospital with a renowned neurosurgery unit, but I have had to stomp my metaphorical feet to get things moving. I still haven't had any response from Occupational Health, I could be posing a risk to myself or others, by being back at work, but I did have the Consultant Neurosurgeon phone me back, within two hours of one of my especially eloquent emails.

    Opticians next week, to see how much of my sight I have lost 'in numbers', because, as it is, I'm just making things up as I go along. I know my deficits are small, compared to some, and, I know now that I'll never 'recover', after my initial ratbag-defiance stance, but I need to know what I'm dealing with. I still have a voice, and my pen is mightier than any sword, I'm just still 'floating' a bit, until my next round of surgery.

  • Hi Gaia

    Get the optician to do as many tests as then can eg fields and ask for a referral to ophthalmology if you're not happy.

    Hope all goes well.



  • I've specifically asked for field-of-vision, because I know my left peripheral has gone, luckily, the optician only had afternoon appointments, and my vision deteriorates as the day goes on, so they'll get an accurate reflection, not the coffee-fake version.

    I'll be OK, I always am. x

  • Hi Gaia, a good, now retired ophthalmologist optician friend of mine told me many years ago in the UK, that mornings I.e. Early tests are better because the eyes are rested and seen at their 'best' normal vision - not later when they have been working hard, then do not give an accurate reading of state of vision! Ido believe he is right. Before my BI IN France, I needed glasses to read and some for longer distance , I.e TV and driving. I had unexpected sudden aneurysm and brain haemorrhage In France and neurosurgeon in his letter to my GP here, suggested I see an opthalmologist (they are not also dispensing opticians here. It took 21 months before I saw anyone, mainly my fault, but also waiting lists 6 months + before I saw the hospital opthalmologist, afternoon appt, large waiting room, brightly lit - also not good! Told I had cataracts in both eyes, left eye worst (my vision was like looking at TV in fog! 12 weeks later I had 1st of 2 ops, both in March this year and the difference was amazing - especially for color, now I don't need glasses to read at all, but still need distance, just for TV, to read writing on the screen better.

    I had the same distance lens put in both eyes, the left eye done 1st, but now 5months later, find my right eye is slightly better reading large writing on the screen, the left still a fraction blurry. The same looking up at the sky and stars tonight, without glasses, and with them, so yes I think it may be better if you try and have a morning appointment. I still had some double vision without the glasses and looking upwards.

    Also make sure the optician you choose, is a well qualified opthalmologist as well, so go to a proper one, it's probable the test will be more thorough - essential after a B I - then choose your glasses frame from whichever optician you want to go with your eye examination prescription for glasses, if you don't want to spend less on new frames. the important thing is that it's a good eye test! I have lenses made by Essilor, chosen by me in the Opticians here, in my new frames, more expensive but worth it for the quality. Hope this helps. Good luck.

  • Many thanks.

    I understand the logic in having an early-morning eye test, it's the same reason that my initial return to work was mornings-only. What I need, for me, is to know how badly my vision has deteriorated, though. My current glasses have virtually no correction on the left eye, and only a very slight correction on the right, and were initially more to 'filter' my photosensitive migraine than for any other purpose.

    My logic is that if I have the right degree of correction on my lenses, my eyes might not fatigue so badly as the day wears on? I've had the same prescription, with no change at my last two-year check up, for about three years now, if there is no change observed on the eye test, I'll start the process of elimination through other avenues, eyes might well be the windows on the soul, but they're also just one part of the amazing bio-thing that helps us to see.

  • Eye test, including pressure, curvature, and field-of-vision done.

    A slight degree of astigmatism noted on the left eye, which wasn't there at my previous tests- that's not the strangest thing, though.

    Field-of-vision score came back 'textbook perfect', so, even though my vision on the left side is sometimes sparkly, and sometimes barely there at all, it's still functional.

    Even that's not the strangest thing.

    My right eye was my weaker eye 'before', the correction required was pretty negligible, at -0.5, against a correction of -0.25 on the left eye, the optician was very honest, saying that I didn't 'need' glasses, I only wear specs for the pink tint that does seem to have reduced the frequency of my migraines.

    The right eye now requires NO correction, and the left a correction of +0.25. I have ordered new rose-tinted glasses to the new prescription, but am starting to resign myself to the fact that the visual disturbance is more likely my brain than my eye. We'll see how I get on with the new prescription.

  • Well done Gaia at least you know where you stand now, but yr next appt might be worth trying to see if does make a big difference in mornings. I agree with you on visual disturbance. ' Perception' as I've discovered plays a major part in my vision now, especially if I'm tired and been on Internet too long.

  • I do/did have access to these services, but I wasn't ready to accept at the point that I saw I guess it was a neropsychologist a month after.

    I was still connived I'd be back on the big MTB that I'd just bought, and every thing was fine.

    which has meant that as time has gone on I've discovered problems and either had to get refured via the GP to access services. Though she had refured me to the falls clinic for older more infirm but they refured me to the Nero physo who where fab.

    I'm fairly mild. Which in many ways hasn't helped. In terms of getting help.

  • I agree that there's a huge postcode lottery. I was in an RTA in Mexico in January. I was flown home in a coma and my family got me into a hospital in Berkshire where they are based. I live in London. I applied for further rehab when I was in hospital in Berkshire and was rejected 3 times. It would have been far more straightforward if I'd been in London but obviously while I was in a coma my family wanted to be able to visit me on a daily basis.

    I was discharged at the end of June and I'm having to fight with every breath I have got to get any care from the NHS. I've been told that I might get rehab in October but we've got to apply for funding again.

    We'ven given up trying to fight the NHS and are now paying privately for rehab. I'm aware we're lucky to have this option available to us but everyone should be able to access this sort of support.

  • Think it is all down to 'he who shouts loudest!' The NHS is seriously lacking in funds so you have to be a pain the arse to get access to services like physio and speech therapy.The 'meek might inherit the earth' but they dont stand a chance of NHS services unless they push hard and loud and after a Brain injury there arent many people who want to put themselves through that! hence a strong partner or friend who can shout for you. I feel so sorry for people on their own who have to fight their corner without the troops!

  • My experience over the last 5 years has been that if you don't ask you don't get......and sometimes you have to ask, and ask, and ask, and ask - and then wait, and wait, and wait, and wait.

    Fortunately (?!?!) in amongst it all the issues with the ol' brain don't just get better and go away so when that referral does finally come through months later you are still in need of the help.

    My local ME team here in Lincs has been amazing for getting me into rehab and physio services. They have also been fab at backing up my requests for neuro services, and particularly those which are specialist and out of area: my GP always defaults to sending me to the local guy who just says 'nothing structurally wrong, seek psych help' or 'control headaches and all will be much better'. As (a) I already have had and still have at-the-end-of-the-phone access to psych this is irrelevant; (b) my head has been a problem since I was 13 and isn't going to go away and (c) he managed to fail to spot an 8mm annie on an MRI in 2011, it is fair to say I don't have much confidence in him, so being able to access London and Sheffield has been very important.

    But even me, who is used to being quite shouty, and giving people instructions with an expectation that they will deliver on them, found this hard on occasions and had to resort to bringing my husband along to the last few GP appointments so we could gang up on Mr Important Doctor.

    Postcode lottery? Absolutely, and not just in terms of access, also in terms of quality of service provision.

    She who shouts the loudest? Definitely. That is why advocacy services are so important, because without them so many would have no voice at all.

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