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Thread: BBC Interview

  1. #1
    Forum Member Calum's Avatar
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    BBC Interview

    Here's a link to my BBC Interview about the need to improve care provision for MND sufferers and those with related neurological conditions

    http://www.bbc.co.uk/news/av/uk-scot...om-our-battles

    The background to the interview is that Sue Ryder have recently published a report about the poor state of neurological care in the community across Scotland - here's the link:

    http://www.sueryder.org/how-we-help/...t-write-me-off

    The report was debated in the Scottish Parliament yesterday and NHS Scotland have been charged with getting their s**t together by the end of next year !!

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

    Thanks for posting this and well done for the interview. Unfortunately we have a similar postcode lottery in England as well.

    Good luck with the campaign.

    Barry
    Life is a journey, not a destination.

  3. #3
    Forum Member ccinjersey's Avatar
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    Well done to you Calum.

    It takes courage while battling this illness yourself to also battle for others to make changes for the better for all.

    CCxox
    .

  4. #4
    Forum Member Calum's Avatar
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    The media are picking up on this new intuitive which received cross party support in the Scottish Parliament

    https://www.indigopr.com/newsroom/du...al-conditions/

  5. #5
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    Calum, I'm really proud of you for raising this issue. You truly are extremely brave and thoughtful.
    I hope the campaign continues to grow.
    Bern
    Last edited by Bern; 6th December 2017 at 21:28.

  6. #6
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    Well said Callum let's hope the message gets across and something gets done Andrew

  7. #7
    Forum Member Barry52's Avatar
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    Hi Calum,

    Love the “beach buggy”.

    Barry
    Life is a journey, not a destination.

  8. #8
    Forum Member Terry's Avatar
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    Well done Calum;

    Clear and concise and moving too.

    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 keeps 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.

  9. #9
    Forum Member Calum's Avatar
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    My BBC interview has generated a fair bit of press interest - here's the link to today's Scotland on Sunday piece:

    https://www.scotsman.com/news/uk/mnd...care-1-4641225

    In Scotland as I use a ventilator 24/7 I'd end up blocking a bed in ICU if I wasn't being cared for at home. The cost differential is 150K a year to keep me at home compared to 750K a year if I ended up in ICU. Putting the financial aspects to one side, being able to be in my own home surrounded by family and friends is a priceless gift on top of these financial savings.

    IMG_0048.jpg

  10. #10
    Forum Member Ellie's Avatar
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    I didn't know you were fully ventilated Calum, I thought you still used a BiPAP/NIV. How is it going?

    At least with NIV/BiPAP, we don't need an ICU bed and can go into a hospice for respite or symptom management, although obviously we won't live as long...

    I wish you all the best with the ventilation.

    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

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