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Thread: Improving MND Care Survey

  1. #1
    Forum Member Jay_MND's Avatar
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    Post Improving MND Care Survey

    From today, we will be asking people with motor neurone disease to tell us what itís like to access support from NHS, social services and from us. We will be doing this through a comprehensive survey sent to people with MND.

    People with MND, for whom we have contact details, will receive a questionnaire sent either by email or in the post starting this week. Responses to the questionnaire will be treated anonymously and confidentially, so you can be totally honest in answering the questions. For more click here.

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    Forum Member hanginginthere's Avatar
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    Done mine!
    Nothing is impossible, the word itself says 'I'm possible'!

  3. #3
    Forum Member Jay_MND's Avatar
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    Just a very quick reminder that if you received an Improving MND Care survey from us, deadline for submission is Sunday 7 February.

    What you tell us in the survey helps inform our priorities so that we can set objectives for raising the standard of care. It also provides evidence that we can use to influence statutory services. We appreciate your support - thank you.

  4. #4
    Forum Administrator Admin_MND's Avatar
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    Thank you to the 919 people who completed our Improving MND Care Survey - that number makes it our largest ever survey of those living with MND. We now have the findings, read them in full - click here.

    In brief, the results show an improvement in awareness of MND at the time of diagnosis, a better diagnosis experience and explanation plus the opportunity to ask more questions. An increased number of people have a named person coordinating their care and more people are having their breathing regularly checked with increased access to non-invasive ventilation and machines to help with coughing.

    The results will help us shape our next 5 year strategy which is currently in development, we can focus on the areas that need improving. These include;

    - Time until diagnosis
    - Earlier social care support
    - Better promotion of our information for later stages of MND
    - Further support for children, young people, family and friends who care for someone with MND
    - How we communicate and adapt to needs
    - Coordinated care

    Overall, satisfaction with services provided by the Association remains high, with over 80% of people rating us as either excellent or good. Thank you once again to the 919 people who contributed.

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    Hello MND connect,

    I wish you would publish the steps we can take to lobby the early release of trial drugs. Who do we contact? How do we contact? What can we do?
    I am fed up donating money to this cause to log on here and find you had to be begged and coerced by longstanding members of this forum (who were my lifeline BTW) into contacting members of the forum who needed immediate help that you could instigate because of your own self limiting protocols. I am so glad to see you have taken steps to help now and thank you for that. I remember being worried sick about Graham a while back on here as he was being left uncared for.
    I see BrainStorm are releasing news today of their phase 2 trials. Will you report on that later?
    My own husband is gone now but I am still wanting to help everyone else with this. I look on here and am convinced more people, younger people are being diagnosed and I am also convinced from the proper statistics that one in 300 are now likely to get a form of MND. My own grandson is now diagnosed with dyspraxia which is where motor neurones do not develop properly in babies. Dyspraxia is another motor neurone disease to add to the growing list of other diseases that affect or directly impact motor neurones.

    Can you create guidance sheets on how to lobby the FDA, convince NICE and get any help be it for man or mice?
    What can we do now to get more attention from the big pharmaceuticals to enable people with this disease to seek and obtain trial drugs please?
    Thank you.
    Sylvia.

  6. #6
    Forum Member Jan's Avatar
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    Well said Sylvia! I for one would like to see more of us participating in trials, I have never ever been offered anything but tea and sympathy, which is all very well but a bit of a write off. The only thing I have been 'offered' is to agree for my details to go on a national register which has had hundreds of thousands thrown at the database alone! my life might mean nothing to the powers that be but it means everything to me I do wish they would at least give us a fighting chance (rant over)

  7. #7
    Forum Member GrannieAnnie's Avatar
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    Hi
    In my early stages I researched trials and wrote to many institutions offering myself for trials only to be told that it is done on an 'no name' basis they do not want to know identities so I rather shot myself in the foot. Even my local hospital where I was finally diagnosed and who run their own trials weren't interested. I have no idea how one is supposed to get on a trial other than the national register. Ann x


    QUOTE=Jan;67395]Well said Sylvia! I for one would like to see more of us participating in trials, I have never ever been offered anything but tea and sympathy, which is all very well but a bit of a write off. The only thing I have been 'offered' is to agree for my details to go on a national register which has had hundreds of thousands thrown at the database alone! my life might mean nothing to the powers that be but it means everything to me I do wish they would at least give us a fighting chance (rant over)[/QUOTE]

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    Sylvia,
    I recently viewed a webchat with Gordon Aikman and Professor Chandron ? Regarding trials and was shocked to hear, when asked the question about any trials taking place, that the professor said he hoped trials would start within the next 5 years!!! Why are we so behind the USA, Israel and Japan

  9. #9
    Forum Member Barry52's Avatar
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    Quote Originally Posted by staney View Post
    Sylvia,
    I recently viewed a webchat with Gordon Aikman and Professor Chandron ? Regarding trials and was shocked to hear, when asked the question about any trials taking place, that the professor said he hoped trials would start within the next 5 years!!! Why are we so behind the USA, Israel and Japan
    Hi Staney,

    Answer in a nutshell, because our healthcare is free.

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

  10. #10
    Forum Member john's Avatar
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    Staney,
    I think the trials happen in the USA because they have a lot more potential customers and as Barry says the money is there. If they can get FDA approval for a drug then medical insurance will pick up the tab.
    On the trial front part of the problem is that when selecting participants they usually want people who have had mnda for less than two years and also slower progressors . Presumably they look for people who are likely to survive the trial which may sound callous but a pharmaceutical company has to invest millions in carrying out trials and collecting and analysing the data. If they select their participants carefully then they are likely to get results from all involved.

    John
    Last edited by john; 19th July 2016 at 08:36.

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