The fight for a wheelchair – part 3

Read part 1 here 

Read part 2 here 

So, I have another appointment with wheelchair services to see GBL, this time at Thurrock Wheelchair Services, and he brings along the chair I want and the one that the NHS will provide. Even with the lightweight one from the NHS fatigues me quickly. The occupational health lady can see that very clearly. And how easily I get on with the Quickie Helium. They agree that they will give me a voucher for a certain amount, now I just had to wait for the letter agreeing the voucher will come through.

Within a week the voucher came through, it was for just over £1.7K. I immediately email a copy to Acces to Work and then obsessively check my email for them to get back to me. My contact calls me back the next day. Access to Work will fund the full amount for the rest of my wheelchair. I was so happy that if he had been there in person I would have kissed him. I was actually in the ROH office that day doing casual work and I honestly cried and got hugs from people – they knew how much this meant to me.

This has felt like a hard battle – and I got it all in writing the week beginning the 15 December and placed my order with GBL wheelchairs then, but of course they closed for Christmas just after getting the paperwork. I have to wait for them to reopen in the new year and then it will take six weeks for it to be built.

Now I have to wait to see how the payment side of things all works out, but GBL are used to handling all of this and I am sure will talk me through the stages.

It is exhausting, although this is a several blog posts long it really cannot convey the heartache, stress, shouting and screaming (at home, not to NHS staff I would like to point out) and general all round exhaustion this has bought out for me.

Fatigue is a very real and, for me the worse part of this illness, HMS/H-EDS affects everyone differently, but I find that my fatigue and pain is greatly exacerbated by stress. This has been a very stressful experience. And as I have stated I am privileged for many reasons, but also, if worst came to the worst, I could have begged, borrowed, wiped out every penny of savings and used my credit card to get this wheelchair. It would have left me financially vulnerable to do so, but together my husband and I could have sorted this out.

This is not possible for a lot of people, especially when you consider that many people with my condition (or indeed many others) are not able to work, and I got the biggest part of this funding from Access to Work. I am fortunate to have been self employed and been able to go back to being so, I have also been extremely supported by ROH who put me onto Access to Work in the first place, they also wrote an extremely persuasive email to Access to Work to push me up the waiting list.

And finally I have the most wonderfully supportive husband, who made some of the calls for me when it all got to much, who listened to the details of every single word said at each conversation and who held me as I sobbed that this was all too much and I couldn’t do it any more.

I cannot even contemplate having to fight this battle all by myself.

And of course, this is just the first of the battles I have to fight……

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14 Comments

  1. Thank you for this. I am just starting my ESA journey and trying to gradually figure out what will enable me to get back in to work (I HATE not being able to work) and I’m thinking a wheelchair would be a possibility. But gosh it sounds like a nightmare trying to get one, and your mobility sounds much worse than mine. I can manage one long walk most days with crutches. But I couldn’t make it to a place of work and back and around an office. The few days I manage to do more than one activity I end up needing to rest the next day, and if that isn’t possible then I need to rest two days after that and so on. As I’m sure you have experienced. I’m 27 and finally got my h-eds diagnosis last year. I have no idea if I will be entitled to any kind of mobility help, but I don’t have any finances spare to fund anything. Perhaps a gofundme or similar website is my best way forwards now?

  2. I would suggest in the first instance you call your local NHS wheelchair services (google will help you). They will tell you if they are likely to be able to help you and if they can then you can get your GP to refer you. It is a bit of a postcode lottery from what I understand. You can get a fairly lightweight chair from your services if you are classified as an active user.

    I really resent that fact that anyone in the UK thinks about going crowding funding to get a wheelchair. I am not judging you I am judging the system – you shouldn’t have to think about that at all. We are British – not American, we have welfare system, it has just been cut to tatters.

    Google your area’s NHS Wheelchair services and see what they can do for you! Let us know how you get on.

    My mobility fluctuates daily and I am getting better at walking short distances, but it takes so much energy and concentration I then have to go and have a long rest. Certainly not conducive to getting any work done.

  3. Hi Jen
    Thanks for the info on your fight! I’m just about to start a similar process, having a degenerative nerve / muscle wasting condition. The last fall seen me in total agony for 4 months and an unhealthy addiction to prescription pain killers, just to get to work. Leaving me basically stuck indoors doing nothing other than my day job. Unfortunately my stubbornness to stay on my feet has really made things worse much worse, so have recently decided to go down the part time wheelchair route as giving up work is not an option.
    The thing I’m interested in is just how long did your process take? I already had an independent assessment and have a quote for a wheelchair ready to go I’m just not sure I can go through months of hell waiting and dealing with wheelchair services and access to work….

    Thanks for the info
    Denver

  4. Hi Denver

    I’m glad I could help, I am sorry to hear about your degeneration. I think that sometimes our stubbornness can make things so much worse for us!

    it took about 3 months from start to finish, but that was partly due to being given misinformation.

    Get your dr to refer you to wheelchair services, it is worth it as I got a voucher from them for about £1.2K and then access to work paid the rest. Start by going to w/c services and then call access to work as they will want to know what help your local w/c services will give you.

    Jen

  5. Such a helpful series, thank you Jen! If I get the te point of needing a wheelchair it will definitely need to be a lightweight one like yours otherwise I won’t stand a chance! I’ve an appointment with one of my specialists in a couple of weeks, so may bring it up with them to see if it’s somethings should be looking into & if so, how best it would be for me to go about it. Xx

    Tania | When Tania Talks

  6. I’m not for my EDS, so had to figure my crutches out myself. I’m being seen for my first pre-pregnancy counselling next week & seeing as my coming off my medication has had a big impact on my mobility it seems to make sense to speak to them about it. Hopefully they’ll be able to help or at least advise.

  7. It does seem odd that we are just left to get on with it with no reviews.

    Good luck with the pre-preganncy counselling – is that genetic counselling? I think you live in Essex, so there is a chance you will end up seeing a friend of mine!

  8. I completely agree. My neurologist was furious when he found out I’d had no support & wasn’t being seen by a physio despite my requesting a referral from my GP!

    Thanks! If I’m honest, I’m not really sure what the pre-pregnancy counselling is! My gynecologist offered it without much explanation & because I was going through a bad patch with my GP (who is usually really good!) I jumped at the offer of extra support. It’s at Birmingham Women’s Hospital, as I live in Warwickshire now. It’s with a neurologist as I have seizures with my migraine & am being investigated for PoTS. My gyne wasn’t sure whether I should be seen by a neurologist or rheumatologist so made the decision with his colleagues from each discipline. I’m wondering whether I would be better to be seen by a rheumatologist as I’m already seen by a neurologist for my migraine & most of my questions are EDS related. I trust my gyne though & am sure if the person I see on Friday thinks I need to see a rheumy they’ll make the necessary arrangements.

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