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Thread: Hello & help choosing care centre

  1. #1
    Forum Member
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    Hello & help choosing care centre

    Hi all. This is my first post! My mum was finally diagnosed with MND 2 weeks ago. She has been suffering deteriorating slurred speech since Dec 2013, and is now also having difficulty with eating certain things & choking more often. Mum is also a kidney transplant patient (of 27 years!) & is under the care of the renal transplant team at St Mary's in London, which is where she has been seen by the neurologist.

    During the consultation when we received the devastating diagnosis, confirming our worst nightmare, the neurologist explained she could refer mum to more specialist clinics, one being the National Hospital for Neurology in Queens Square in London or The Oxford MND Centre (we live half way between both). To get to Queens Square mum would have to catch a train then taxi, whereas we can drive her to Oxford in the car.

    As we have no idea what to expect from this MND journey, we are finding it hard to decide which place to get referred to. Mum feels loyal to London & is used to travelling in for her renal appointments, but would it be more realistic to go for the option with easier travelling for when/if things aren't so positive for mum? Also, if anyone has any thoughts, both good & bad, on these specific places, we'd love to hear your thoughts / recommendations.

    Apologies for waffling on! I've found the other posts so helpful and informative.

    Thank you 😀

  2. #2
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    Sadly there is no cure, they just offer you support and treatment for the symptoms. As this is often just a chat, suggest you go to the nearest centre.

  3. #3
    Forum Member Nettie B's Avatar
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    Definitely the nearest option. Travelling to the specialist centre can become quite a problem if it is a long way particularly if other symptoms begin to occur.
    So glad your Mum has you for support and do look after yourself won't you.
    XX Nettie (wife and carer).

  4. #4
    Forum Member Barry52's Avatar
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    Hi Renza8

    I suggest the easy travel option since negotiating London transport with a disability will not be easy. Whilst I agree with Trevor in that we have no cure, the Oxford centre like Sheffield where I go is at the forefront of developments. The also have a multi disciplined team who assist with how to cope as the disease progresses. They are able to help with breathing difficulties, swallowing and diet, walking aids and wheelchairs.
    I hope your mum has the care she deserves and please feel free to visit the forum for advice and support at any time.

    Best wishes.
    Barry

  5. #5
    Forum Member Terry's Avatar
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    Hi Renza;

    Sorry to hear about your mum, but welcome to the forum. I would choose the easiest one but do bear in mind any associated places that she might have to visit.

    She might be able to keep a finger in both pies but it would probably be better to have one.

    For me, in a powered wheelchair it would be very hard to get a train and I would need a special Taxi, need I say more.

    Best wishes, Terry

  6. #6
    Forum Member Ellie's Avatar
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    Hi Renza and welcome.
    Ease of access is so important. Hospital appointments are stressful enough without issues about public transport.
    Barry and others hold The Oxford Centre in high regard.
    Ellie.

  7. #7
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    Hi Renza, sorry to here of your Mum's news. I would also concur with the others that the closest hospital would be best. My Mum can travel to her hospital via car and still finds this exhausting so I'd suggest ease of access if possible. Best of luck x

  8. #8
    Forum Member
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    hi,
    i really can recommend the John Raddcliffe hospital, Oxford. I was diagnosed there and spent a few months under their care before moving back to Devon. I was diagnosed by Dr Martin Turner who was so wonderful and sympathetic and the other main man is Dr Kevin Talbot who recently appeared in the channel 5 documentary and he is also a very nice man. Its a great MND clinic and it is wonderfully staffed.
    Best wishes
    mik

  9. #9
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    The team at Oxford are fantastic! We travel there by car - on a good day it takes about an hour. They liaise with my local OT, Physio. dietitian etc. I can contact any of the team (including Prof Kevin Talbot and Dr Martin Turner by email). Rachael Marsden, the specialist nurse co-ordinates everything and is very warm, caring and welcoming.

  10. #10
    Melanie_MND
    Guest
    Hi Renza,

    We have just redeveloped our care information sheet on MND care centres:

    MND care centres and networks

    All of our care information sheets can be found here.

    I hope this helps,

    Best wishes

    Melanie

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