I'm dying. And fast.

That ‐ in short ‐ was what my doctor told me when I was diagnosed with Motor Neurone Disease.

It's not the news you expect when you are 29 years old.

Motor Neurone Disease (or MND) is a progressive and debilitating disease that attacks the brain and spinal cord. It leads to weakness and muscle wasting and will affect how I walk, talk, eat and breathe. There is no cure.

Soon it will kill me.

I don't want pity. All I want is for you to take action to help fund a cure and fight for better care for people with MND.

It'll be too late for me, but we must ‐ and with your help we will ‐ find a cure for the next generation.

With your help I can turn a negative into a positive.

Thank you for your support,
Gordon

Gordon's Fightback

Here's six things the Scottish and UK Government can do to help find a cure and transform care for MND patients:

  1. No Action:

    Double MND research funding

    Researchers don't even know yet what causes MND, never mind what they need to do to cure it. By doubling the amount of money the UK Government spends on MND research we can find a cure quicker and stop the needless loss of life.
  2. Monitoring Problem:

    Fast-track benefits

    People with MND do not live long: half die within 14 months of diagnosis. Yet, can take up to seven months to process applications for the benefits they need such as Personal Independence Payments. What's more, during this time carers can't access the help and support they need either. The UK Government needs to develop a system that ensures terminally ill patients and their carers get the support they need, when they need it.
  3. Monitoring Problem:

    Outlaw care charges

    Shockingly, in some parts of Scotland, MND patients are being charged for the help they need with things like washing, dressing and feeding themselves. That is despite clear guidance saying terminally ill patients should not be charged for personal care. When you are on your deathbed: worrying about where you will find the money to pay for the care you need is last thing you should be on your mind. The Scottish Government should make charging terminally ill patients illegal and introduce tough penalties for councils flaunting the law.
  4. Delivered:

    Pay MND nurses from the public purse

    The specialist nurses that provide the care and support I need are a lifeline. They have decades of specialist knowledge. I don't know what I would do without them. And yet Scotland's seven specialist MND nurses only exist because of donations made to charity. That's not fair: these nurses are providing a vital public service, they should paid for 100% from the public purse. We can and should be providing this vital service through our NHS.
  5. Delivered:

    Double the number of MND nurses

    At any one time there are around 400 people living with MND in Scotland. And yet there are only seven specialist nurses for the whole of Scotland. That means they have massive geographical areas to cover resulting in a huge amount of their time being spent traveling to get to patients instead of caring for patients. What's more despite the fact that the number of people in Scotland with MND is increasing the number of nurses has remained constant. If our NHS funded more nurses it would mean MND patients would get the help and support they need to improve the quality of their lives sooner.
  6. Action Promised:

    Guarantee MND patients a voice

    One of the worst aspects of MND is that up to 95% of patients lose their voice. Amazing solutions exist, such as eye-gaze technology and voice synthesisers, which can help patients communicate. The problem is this equipment is not routinely available in Scotland from the NHS. We need to change the law so that nobody dies without a voice.

Email your MP and MSPs asking them to back the 5 Point Fightback

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Tweets from @gordonaikman

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Thursday, July 30th, 5:26 PM

#MND ain't funny... but these guys are! #lolzforacure #EdFringe, 10 Aug. Tickets: http://t.co/U5UC9TolPP ★★★★★ — Me http://t.co/aoxKdsCdYZ

Wednesday, July 29th, 6:03 PM

RT @sohotheatre: So 10 Aug @edfringe is THIS great thing, hosted by Kitson & feat. Soho Theatre chums Tony Law, Stewart Francis etc http://…

Wednesday, July 29th, 5:35 PM