Access to work doesn't make sense

jayCeed
jayCeed Online Community Member Posts: 1 Listener
edited May 31 in Work

Hey all,

Posting this in here for some advice or to know if I'm barking up the wrong tree.

Anyway, sadly, I have a incurable condition (FSHD) that seems to get worse every year.

I currently use an NHS supplied carbon fibre split - a AFO for short. But due to my weakness travelling up my leg they just don't work the same.

As my job as a journalist is active and requires me to travel, stability is key. Also, going up stairs etc is a must as not every place is accessible.

So I've been recommended I go down the private route and found an orthotics which is everything I need. Everything is groovy bar the price, which comes to 14k. I mean it has everything (stair mode, everything).

I put in two requests for the access to work scheme and were rejected as they don't offer personal aids... Fine, but they said I could get a wheelchair - probs one of the most insulting things ever said to me.

As far as I can see, an electric chair is also a mobility aid?

So I just want to know is has anyone got something like this on one? Or any other places to try and raise a bit of money (grants or stuff)?

Thanks,

JC

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Comments

  • Santosha12
    Santosha12 Online Community Member Posts: 1,189 Pioneering
    https://forum.scope.org.uk/discussion/135121/access-to-work-doesnt-make-sense

    Hi @jayCeed, I am definitely no expert in this sorry, and no personal experience but, just a thought, are you in the union (NUJ)? Might they offer any kind of welfare support or grants, even a contribution, towards the orthotic that you need.

    (I was a nurse and got some assistance from 'Lamplight', part of my union the Royal College of Nursing, and also a small grant from the Edith Cavelle Trust).

    Might there be similar type of charities/Trusts/Benevolent type society that supports your profession.

    I do hope you can find an answer that enables you to get the orthotic. Just a final thought, is there a charity that supports FSHD who might be able to help you?

    I'm sorry you've had that response from Access to Work, - is there an appeals process that might be worth pursuing.

    Take good care and my warmest and best wishes to you in getting the funding needed. BTW, I would have thought that an electric wheelchair would be classed as a mobility aid too!

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