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Thread: Physio and Hydro

  1. #1
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    Physio and Hydro

    Hi everyone, want to have a moan!

    Since diagnosed in January I have no physio my authority have no physio specialist in neuro conditions.

    I would love to have some hydro sessions and again the funding for sessions have been taken away.

    I am so frustrated at the services or lack of them.

    What experiences have others had my left arm/hand is badly affected and my left leg is affected. I am also have problems with my right side so I could do with a physio to help keeping me mobile for as long as possible.

    Ginger

  2. #2
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    Hi Ginger

    Sorry to say I was diagnosed last July and only started to see people this March, physio was one visit only. Just last week the MND nurse has offered me Hydrotherapy and is trying to organise it, I shall wait and see. Both legs nearly gone and one hand.

    I really hope you are much quicker getting things through than me. I think I dropped down an NHS black hole!!

  3. #3
    Forum Member Ellie's Avatar
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    Hi Ginger & Lou,

    Most hospices offer physiotherapy but you may need to attend their day hospice to avail of this service - you'll also have access to (some or all of) nursing, OT, complementary therapy, social worker & counselling services.

    I am spoilt as my hospice offers hydrotherapy!

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
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    Quote Originally Posted by loobylou View Post
    Hi Ginger

    Sorry to say I was diagnosed last July and only started to see people this March, physio was one visit only. Just last week the MND nurse has offered me Hydrotherapy and is trying to organise it, I shall wait and see. Both legs nearly gone and one hand.

    I really hope you are much quicker getting things through than me. I think I dropped down an NHS black hole!!
    Hi loobylou, I know the NHS is wrecked hopefully we will both get the services we need.
    All the best wishes to you stay strong
    Love Ginger

  5. #5
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    Hi Ellie,
    Thank you for your reply I have today had contact with a physio based at my local hospice so hoping I will get some treatments on offer there.

    I've got my first motabilty car now so I will be able to get back my independence. When I get my confidence back to drive it with the adaptions. I will be able to get myself to the hospice.

    Love Ginger.

  6. #6
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    THanks Ginger, Could write a book about the NHS, good and bad. Until you have been through a crisis of some sort and have to really engage with the services I don't think you see the big picture. So much duplication its unreal and systems that don't talk to each other, and yet there are hidden gems and some really hard working people there too. xxx

  7. #7
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    Quote Originally Posted by loobylou View Post
    THanks Ginger, Could write a book about the NHS, good and bad. Until you have been through a crisis of some sort and have to really engage with the services I don't think you see the big picture. So much duplication its unreal and systems that don't talk to each other, and yet there are hidden gems and some really hard working people there too. xxx
    I so agree with you about the NHS. I had real problems initially, accessing my local services. I found that my local hospital had no expertise in treating MND, but did not offer to refer me elsewhere. I needed to self-refer. NHS help was available, but it was totally disorganised and lacking in co-ordination in my area so it was a very stressful time sourcing it. However, I have met some brilliant people along the way. The therapists on my local SALT team are wonderful as is everybody at The Princess Alice Hospice who now take care of me. The NHS does seem to rely rather too heavily on the services of hospices which are dependant on charitable donations. I have found the best care and advice has came from experienced nurses, OTs and Physios. I have become acutely aware that doctors often lack knowledge to diagnose MND and how to offer the symptom-control drugs available. I do accept that MND is rare and that most doctors need to devote their energy to patients with common complaints but GPs need more MND training. I recently visited a podiatrist who gave me some very good advice. She said not to assume and accept that every new symptom was MND related, because it may not be and could be treatable, so to have them all investigated. My own local care is now in place for the present, but when I read that some forum members are able to visit a multidisciplinary Clinic I just wish that these were available nationwide.

  8. #8
    Forum Member Ellie's Avatar
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    Hi Ann,

    I guess your nearest MDT Clinic would be in one of the London centres - Barts, Kings & National Neurological?

    If you think it's worth the journey, I'm sure your local Neurologist would refer you to one of the care centres or you might be able to do shared care.

    I'm glad you found your way to your hospice - yes, they're great places!

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #9
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    Hello Ellie

    Thank you for your comment. I was fortunate to be finally accepted by a very good local hospice, but organising this took quite some time, as it is overloaded with NHS referrals and initially I was refused. It was a great relief when they accepted me as I then had somewhere to go for advice as my symptoms progressed.

    I self-refer to an excellent London Hospital who now offer me all the care I need. However, this possibility was never mentioned to me by my local hospital who had no MND expertise and do feel that I should have been referred automatically. For some time I felt totally abandoned by the NHS and found the situation very difficult, especially as was my dying husband's sole carer. My husband passed away six weeks after my diagnosis so I had to contend with my bereavement, the shock of a having been diagnosed with MND and still having no referrals made.

    Whilst I may appear to live near to London it is quite a long journey due to heavy traffic and the difficulty of parking in central London. As I live alone I have to rely on others to take me for appointments. The hospital are very willing to offer me their other services but the distance makes this prohibitive. Luckily, the hospice now able to provides some of the care I need.

    There is a MND Multi-Dis centre much nearer to my home which would be more convenient but unfortunately it is in a different NHS Trust so I am not eligible to be referred there.

    The care offered in England depends very much on the postal code in which you live and the service the local NHS Trust decides to offer. Some Trusts are excellent, others are not as well organised and many rely on the Hospices to offer the care they do not provide. (My Trust refused me physio.) I have now been able to sort out my care but it has been a struggle. Reading some of the forum comments I am not alone with this, as the standard of care offered is not the same everywhere.

    I really enjoy reading your all advice and I am sure like everyone on the forum find it helpful. So thank you!
    Love
    Ann

  10. #10
    Forum Member Sueb's Avatar
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    Steve started going to our local hospice (10minutes away)but it is in Derbyshire and we live on the border of Nottingham and Derby and the Nottingham commissioning group stopped paying for him to go so he now goes to the hospice at the Nottingham City Hospital(30minutes away) I must say it is much better he has access to a doctor if there is any problems and the nurses are really good. They offer massages to both of us but Steve needed physio so organised 2x4 week sessions through the hospital but that's all they could offer. We now pay for a physio to come once a month. Obviously he needs more but costs prohibit that. It seems you are written off when you are diagnosed with MND.

    Sue

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