More info and awareness needed

There is such a lack of information and families have to find so much out for themselves. My husband now suffers epilepsy following his tbi and its only by chance I discovered he is exempt from paying for his lifelong medication (surely GP should tell you this?). A few months later through epilepsy website I discovered he can get free bus travel (while unable to drive) and qualifies for a Disabled Persons Railcard! I'm sure if we all got together we could create a comprehensive guide for families!!!

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  • Hi Jmt2014,

    gov.uk/browse/benefits

    This link gives quite a good guide to the various entitlements . Your local council should also offer advice or your local Headway may have some signposting options.

    Hope it helps.

    Andy

  • Many thanks Andy, we will take a look.

  • I agree. During one visit to my daughter's GP I mentioned she was receiving support from an ABI outpatient service. I know this info is in her notes but GPs rarely have time to do more than a quick skim. I mentioned the name of the service and the GP stared at me blankly. He had no clue this place existed. I don't actually blame the individual GP because I believe it's the responsibility of the heads of practices to ensure staff are up-to-date on available resources.

    Headway are running a campaign to support and educate GP surgeries. They've produced a flyer and information targeting doctors. They also have a GP Champions scheme. headway.org.uk/get-involved...

    The surgeries in our county have Carer Champions, a staff member you can contact about any caring issues who will support, advice and liaise with the GPs.

  • I know how you feel. I'm sure my husband is the first case of his kind and I guess they're learning from this but just wish they quota ke more interest as we would love to help others in similar situations.

  • Hi JMT,

    I feel your annoyance as I am sure many disabled people do.

    In an ideal world, we would be told about these things, what the disabled are entitled to and so on but to put it bluntly, the government don't give a damn about us!

    I had my bout of surgery through my high school (1996) and I and my family was unaware of Headway until 2007!

    Early 2007 I joined Headway and early 2008 I joined another disabled group local to my area. It was at this other disabled group that I learnt about a yellow card I could get from my social services office that registers me as disabled. With that I can get a free bus pass, which we had no clue about either.

    Another handy thing with the yellow card is that I can use them in cinemas. I would pay to get in but my carer can go free!

    Usually with the cinema I use depending on the cashier, they don't always look at my card.

    But that is another thing they do not tell you about because they don't want you to know about it... So why even make these discounts for disabled and so on?

    I haven't got the railcard, mainly because I don't need one just yet, but does your husband get around by train for free or does he get a discount?

    Another thing I thought of that is handy is the radar key to use on disabled toilets. A lot of disabled toilets are locked when you want to use them and you may have to call someone out to unlock it.

    I bought mine from the town hall of where I live.

    Take care,

    MJ

  • Many of the "big" attractions like Alton Towers, Legoland also give discounts and operate a scheme where if you find it difficult or distressing to queue you can move to the front of the waiting list for the ride.

    And of course their is the "blue badge". Which does make life a lot easier if you have mobility issues or problems finding your car as most spaces are near the door.

    Some utility companies (gas, water etc.) have schemes that help people with disabilities especially in times of service outage.

    BT also have a scheme where if you are a vulnerable person they will reduce the telephone line rental to a few pounds a month.

    There are probably a few more but can't recall them :-)

  • Thanks for your reply. I will definitely look into some of these discounts you mention.

  • Hi thanks for reply. Not heard of the yellow card so will look into this. We had to pay for the railcard which gives us both discounted travel. Guess we will carry on discovering things constantly.

    We were told about Headway by OT when he was in hospital here but he actually had accident in France. I was too frightened to google anything when I was there and no info from anywhere else either so a scary month to begin with. Insurance company were fantastic- maybe they could have made me aware of Headway - if they know about them that is!

  • Oh, I had my accident in France, as well. I fell off my bicycle. Luckily, I had my helmet on. I dread to think what state I'd have been in, otherwise! The French doctor told my husband I was brain-dead. That must have been such an awful time for him - a toddler, a baby, and a wife in a coma, possibly brain-dead. Nowadays, I always insist that we get Churchill Travel Insurance - they paid to bring me back home in a Lear Jet (and, thankfully, the NHS said no, I wasn't *that* bad - 18 months off work on sick-leave, and unable to drive, etc., but hey, nothing like as bad as that French doctor said!).

  • Hi jmt,

    Completely agree with you. I was not warned or told about any problems that I may have after my bi and learnt all I know from here and headway. It's a farce really that you are not warned about the problems you can face especially emotional and feeling problems that I encountered scarey. Have a good evening. Nick

  • I often say "Well, I am 'blind' now, and i can't drive, but hey, I get money off my TV licence, and my train fares, and hey, the bus is free. So, being 'blind' does have *some* benefits!"

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