Dying Fast: Gordon's Diary Of Dying From MND
Watch Gordon Aikman's moving and inspirational discussion with Iain Dale about his battle with Motor Neurone Disease.
Gordon Aikman is dying. And he's dying fast.
The 29-year-old was diagnosed with Motor Neurone Disease (MND) last June. On average half of people with MND die within 14 months of diagnosis.
Motor Neurone Disease is a rare, debilitating and progressive disease. It attacks the nerves which carry messages from the brain and spinal cord to the muscles. It leads to weakness and muscle wasting, meaning that soon, Gordon will be in a wheelchair. Soon, he will struggle to feed himself and even breath. Soon, he will die.
There is no cure.
But he does not want pity. He wants action. Gordon knows it is too late for him, but he wants to fight for better care for the the next generation of people struck by this deadly disease.
He has a five point 'Fightback' plan that he wants the UK and Scottish government's to commit to.
1) 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 and Scottish Governments spend on MND research we can find a cure quicker and stop the needless loss of life.
2) Fast-track benefits for MND sufferers
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. 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) 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) Pay MND nurses from the public purse - DELIVERED
The specialist nurses that provide the care and support I need are a lifeline. 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.
5) Double the number of MND nurses - DELIVERED
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. 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.
Gordon, and his partner Joe, are going to keep an audio diary for LBC, to give an insight into what it is like to live with this devastating disease.