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Thread: Physio & OT Support

  1. #1
    Forum Member Mr W's Avatar
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    Physio & OT Support

    Hi

    When I was first diagnosed with MND, I was referred to the local NHS Trust Physio/OT team. I was visited regularly & assessed. After 6 months or so I was discharged. They would still answer specific questions from me, but no on-going periodic assessment.

    So fellow sufferers, do you find this is the practice in your area?

    Thanks

    Richard

  2. #2
    Forum Member Barry52's Avatar
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    Hi Richard,

    Over a period during the last 2 years I have been referred for physio and generally after a few visits they discharge me with a program of exercises to do at home. As mobility issues progress my GP or consultant will refer me for the next stage of physio. You are entitled to treatment under the NICE guidelines so I suggest you get your GP to resubmit your need for physio.

    In this era of austerity I suspect your health authority is trying to save money but they should not be targeting people living with MND.

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

  3. #3
    Forum Member Terry's Avatar
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    Hi Richard;

    It is a tough are as probably 95% of us would benefit from it three times a week to lengthen our muscles and move the joints etc.

    My hospice even wrote to me saying that they could no longer help me unless I got a letter from my doctor. How they can discharge us is hard to believe but I think that Barry has the right idea.

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

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  4. #4
    Forum Member Mr W's Avatar
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    Thanks Barry & Terry

    Richard

  5. #5
    Forum Member Smudge's Avatar
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    When my husband was diagnosed in July 2012 the neuro surgeon told him that he would be passing his details on to the palliative care team at the local Macmillan unit. He went on to explain we should not be afraid of the name of the team, & that he had created this link with them for help & support. Within days we had contact from physios, OT, speech therapists, benefits advisors and a designated sister who saw John & I every couple of weeks. All of the above had regular case conferences , including the neuro & were always one step ahead. We wanted for nothing & without their help & support I genuinely would not be here now. The team never stepped off at any stage, were involved in the building of the extension & arranged CHC without me getting involved ar all. I read posts on here & realise how lucky we were to have that support network.
    Last edited by Smudge; 8th November 2017 at 19:29. Reason: Typo

  6. #6
    Forum Member Newbie17's Avatar
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    Wow! Sounds like you had the dream team!
    Wish I lived in your area. Only help I've had has been when I've gone looking for it . Had to chase OT and physio myself. Been referred to social services now as my needs are getting more complex . We'll have to see what happens next.
    Now I know what they mean by the postcode lottery!

  7. #7
    Forum Member Streetwise's Avatar
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    My mothers OT was very kind and helpful but sadly she left our town and went to another post I think the social services team that helped smudge a very unusual never heard anybody else getting help like that

  8. #8
    Forum Member Smudge's Avatar
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    I think it's a model that could and should be adopted everywhere and I tell people this at every opportunity. Because they had so many MND patients 'on their books' they had vast experience of how the illness progressed and would make sure that equipment and/or support was in place just when it was needed. For things like wheelchairs, they made the contact with our local council to arrange this along with hoists, hospital beds, even a toilet seat riser & a manger Elk for when he had falls. As a carer, it took so much pressure off me & meant I could get on with loving him & for John, it meant that he was never in a position where he needed something but didn't have it. Not sure if naming people in praise is against forum rules, so if it is please edit my post. But if it isn't, then Charlie Hillier, take a bow for coming up with this initiative.

  9. #9
    Forum Member Terry's Avatar
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    Hi Smudge;

    It's good to hear that one area has got it right. There's so much pressure on carer partners and most local athorrities just put hurdles in the way.

    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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