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Disabled Facilities Grant

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    Hi Terry,

    At the moment no, I am planning for the work in September, regarding the hoists, my OT has stated that as long as they cost less than £1,000 then they would supply free. My OT would not refer me to Wheelchair Services said it was up to my GP, I rang MND Connect for advice about this and they said my OT is probably not the specialist OT who is able to refer so she was technically correct. I can still walk with aids and support as it is currently all in my left leg, but balance is my problem at the moment so planning all this in readiness, the frustration is all the red tape and post code lottery


      Strange that your OT won't refer you to wheelchair services DKJ. My OT referred me and gets involved with all of my needs. If she can't get things supplied she contacts the other services in her team. She got in touch with my physio who ordered and brought out to me my 4 wheeled walker a few months ago. They have regular care team meetings where my local Physio, Speach Therapist and OT (Occupational Therapist) attend. I only have to tell important news to one of them and its shared So it looks like it's joined up here, but sadly not in your area. My old and new GP had no experience of MND. So I'm glad that they haven't had any responsibility in my wheelchair, walkers and other gadget ordering. I'd be having to fight for everything. My OT is in touch with the Blue Badge team at the Council too. It was her that got my Blue Badge organised when I had been refused when I applied myself. She is a star. Lynne
      Last edited by Lynne K; 17 March 2019, 20:21.
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.


        Hi Lynne K, glad your OT has been a star, it is very disappointing that this is another postcode lottery scenario when anyone with a terminal illness should be treated equally and fairly no matter where they live