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Thread: Adapting Acceptance and Commitment Therapy for people with MND

  1. #11
    Forum Member
    Join Date
    Jan 2018
    Dear Barry and Ellie

    Thank you very much for your helpful comments. I’m sorry that the advert does not list what the study is about – I have included some more information about it below:

    What is the overall purpose of the study?
    The purpose of the study is to develop a new form of talking therapy called Acceptance and Commitment Therapy for people with motor neuron disease. We would like to see how acceptable this newly developed therapy is to people with motor neuron disease, and whether it is possible to provide it in the NHS.

    What is Acceptance and Commitment Therapy (ACT)?
    ACT is a new form of talking therapy that helps people to learn how to live with difficult or distressing thoughts, feelings or bodily sensations, while still doing things that really matter to them.

    What are we doing in this part of the study?
    We are carrying out a series of group workshops and individual interviews with people with motor neuron disease, their caregivers and their healthcare professionals to find out how we might adapt ACT for people with motor neuron disease. These can be conducted over the phone or the questions can be sent to you for completion via email or post.

    Who would we like to talk to?
    We would like to hear from you if you:
    • Are aged 18 and over and have a diagnosis of motor neuron disease;
    • Are caring for or have cared for someone with motor neuron disease;
    • Work with people with motor neuron disease.

    What would we ask you about?
    We would ask you about issues such as:
    • Things that might get in the way of taking part in talking therapy for people with motor neuron disease;
    • How we can adapt ACT for people with motor neuron disease;
    • How we can get people with motor neuron disease involved in the next parts of the study.

    What if I am interested in taking part?
    If you are interested in taking part in this part of the study and would like to see the Participant Information Sheet, or if you have any questions about it then please email or call Becky Gould ( or 020 7679 9225).

    All the best,


  2. #12
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Thanks Becky for clarifying the aim of this study. As ever, I am interested in initiatives to improve the quality of life for me and everyone touched by MND. I will email you so as to avoid communication via this forum but at least your post has enlightened me and our members.

    Iím going to do this even if it kills me!

  3. #13
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Thanks for taking the time to detail what is involved Becky.

    Take care,
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  4. #14
    I was sent information about this by my local MNDA and contacted the researchers.

    As a result, I had an hour long one-to-one telephone interview with one of the team on Wednesday. I probably talked a lot of nonsense, but she was kind enough to say it was helpful.

    If ACT can be tailored to MND sufferers I think it will be useful.


  5. #15
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Oh Doug! Don't underestimate the value of your input.

    On behalf of those of us who cannot speak or have the energy to do the survey - a big Thank You!

    Ellie x.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  6. #16
    Thanks Ellie!

    That's very kind of you to say.

    Actually, one of the things I did point out to them - given that it's a so-called talking therapy - was that they should think about people who couldn't speak or, for example, type. She took it on board.

    This research project is funded by the NHS and the MNDA apparently.

    Night night!


  7. #17
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    This is my take .....

    I took part because I was interested to learn something more about the therapeutic approach.

    I have some training as a psychotherapist.

    So this was about testing "a new talking therapy".

    As some may know, much like pharmaceuticals, therapists sometimes develop new techniques that they then market as the next new thing e.g. Mindfullness".

    Some get benefits for these things and sometimes some people go completely overboard about these things - errr - and some get benefits from going completely overboard!

    "Acceptance and Commitment Therapy" is one of those things.

    Essentially, the researchers have some money to look at whether using this thing would help folks with MND. Beyond the obvious about communication (for those whose speech is affected) this is a technique for helping with anxiety on the assumption that anxiety reduces your quality of life and approach to living with MND.

    I spoke to the therapist that works with the team at Kings that looks after me and he was interested as I was to see if this turns out to be a useful tool for the toolbox of those who work to support those with MND.

    Here is somebody trying to attract you to the benefits of this thing;

  8. #18
    Forum Member Newbie17's Avatar
    Join Date
    May 2017
    I was contacted by my local MNDA a a few weeks ago and agreed to take part in the research. Like Doug I had a long conversation with one of the researchers who ran through a long list of questions.
    I know I would have appreciated the therapy being offered to me when I was diagnosed.
    I had anEmail yesterday from the MNDA asking me to donate to support this new talking therapy through a project called Commend.
    My understanding is that this is the ACT therapy.

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