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Thread: Who decides?

  1. #1
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    Who decides?

    Hi all,
    My partner who is already on the forum was diagnosed with MND just before Christmas. We had the first visit from the OT (occupational therapist) about 3 weeks ago. Our immediate and major requirement was a stairlift. When mentioned, OT said she would not recommend that because MND was a progressive disease.

    Then about a week later, we attended our first MND association area meeting held in Huntingdon. They were very helpful and supportive. They said they would find the necessary funding as long as they have the approval from the OT about providing a lift, and we provided the phone number and name of our OT. Then yesterday it was her (OT) second visit. We asked her about whether somebody from the Cambridge branch of MND association discussed with her funding a stairlift. She said they had been in touch, but still she would not give her recommendation because MND was a progressive disease. She went further to mention everybody was not a Stephen Hawking.

    I am both outraged and hurt. At the last Cambridge MND sufferers' meeting we attended there were about 10 patients. Among them, there were 2 gentlemen survived for 17 years after diagnosis and another one for 5 years. What is our OT's decision based on? How can she say how long my partner will be able to use the stairlift or not? Is there a national policy (NHS or council) of not providing stairlifts to people with progressive diseases? As far as I am aware these lifts are given to another person with need when the use has ended for one person, And, whatever the time period in between, each one involve one installation and one removal. Besides the funding was going to be provided by the MNDA.

    Does anybody read this know how I can challenge OT's decision? I thought the equipment were provided to maintain the quality of the patients life. My partner now sleeps on the recliner-riser at night and sits there all day for the rest of the day. She managed to drag her up the stairs with some support from me, to the bedroom until about 10 days ago. Then she had a fall and landed on her coccyx. Since, she found one leg was feeling heavy and cannot gather courage to use the staircase. On her first visit our OT suggested that we change our living room to a bedroom for my partner, but my partner has not deteriorate to the degree of needing that. As much as my partner, me being the only carer, need some normalcy in our lives. I do not want to lose my living room yet on the top of all these upheaval in life so suddenly, since that is the only place I have to relax after returning from my full-time job. Any advice, suggestions will be much appreciated.
    Last edited by Jay; 28th January 2017 at 19:09.

  2. #2
    Forum Member Terry's Avatar
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    Hi Jay;

    Life is hard enough for people affected by Mnd without over careful OT's. I have covered this a bit on another post but sometimes through floor lifts are an answer as they will allow you to go upstairs in a wheelchair without transfers.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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    Thanks Terry. I was taking the cheaper option. Since my partner is getting paid her salary for another few months we are not qualified to get any sort of state or council help. On the other hand we are not rich enough to afford 66 pound per hour private carers or 11,000 pounds lift. Since MNDA was willing to fund the stairlift, we thought our OT's (perhaps ideological) agreement or disagreement will not interfere.

  4. #4
    Forum Member Terry's Avatar
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    Hi Jay;

    Don't assume you won't get anything free from the state as the Ot's should supply many things and from their budget. I always advise people to hook up with their local hospice as that gives you another set of specialists including another OT that might be a bit more sympathetic.

    Dude was the through floor lift specialist and he reckoned that they were about 4000 fitted.

    Try speaking directly to the Mnda.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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    Thanks for the information Terry. Price I gave was the one we were told by the OT during the first visit. I'll be in touch with Dude when the time is right. Moreover, we do not fully own the property. Therefore installing a lift is one of the last options unless it become really a must and we have the consent of the housing society.

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    Hi jay and Terry
    I had two quotes for a through ceiling lift a few months ago, one quote was 11.000 and the other was 9.000. I've was told the MNDA will pay something towards it, how much, I do not know. I'm struggling myself, getting up and down the stairs, I have to make that decision very soon.
    Mags xx

  7. #7
    Forum Member Terry's Avatar
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    Sorry, I quoted wrong;

    K7 - K8 . Wessex lift. 2-3 days installation. Dude

    You can look at this post:- http://forum.mndassociation.org/show...highlight=LIFT

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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    Hi jay I feel your anger and frustration. Would the housing association your with be willing to adapt? Do you have a mnd association visitor? They maybe able to help you get another OT. My mum has had 3 at the same time from different places, council, hospital and hospice. The council one was pretty rubbish but the other two brilliant. Really hope it works out.
    Best wishes nicky

  9. #9
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    Just Got up. Thanks very much for your advice and support.

  10. #10
    Forum Member Barry52's Avatar
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    Hi Jay,

    Your post makes me feel outraged at how an OT can be so unfeeling for someone living with a terminal disease. Terry was being kind when he said she was over careful. She is incompetent and in the wrong profession. What happened to dignity with disability?

    The MNDA have regional care advisors who can sanction your request for funding from the local branch without going through your OT. I suggest you contact Northampton tomorrow. I often wonder if cash strapped local authorities are exploiting charities who they know will step in because they care about their members.

    Nicky is right to suggest you find another OT.

    Best wishes,
    Barry
    Im going to do this even if it kills me!

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