This week Gordon Aikman gave an impassioned speech at the Edinburgh International Science Festival in a plea to all party leaders to ensure Motor Neurone Disease (MND) research funds are doubled.
The last few months have been an incredible success for the MND patient and campaigner and his Fightback campaign. Gordon, now a trustee of MND Scotland, was diagnosed with the condition in 2014 and has been fighting back ever since – raising awareness and vital funds for research.
Since being instrumental in the commitment from First Minister Nicola Sturgeon to fund MND nurses from the public purse and double their numbers, Gordon has received the First Minister’s support after this week’s call to double research funding. Previous to this he won the backing of Labour Leader, Ed Milliband and Scottish Labour leader Jim Murphy, who in a joint letter to the Medical Research Council called for MND research funding to be doubled.
While Gordon’s Fightback campaign for the moment focuses on funding for research, we, along with Gordon, recognise the need to address issues that are affecting those living with MND right now.
Many people with MND die within 14 months of diagnosis, yet it can take up to seven months to process applications for essential benefits such as Personal Independence Payment – this needs to change, and soon. In February, Ipsos Mori Scotland published a poll showing that 97 per cent of those polled would support the UK government introducing a new system of fast tracking benefits for those with a terminal illness such as MND.
Personal Care Charging continues to be an issue with terminally ill patients, including those with MND, who are being charged for basic personal care. We have persuaded COSLA to change their guidance on this and are currently pursuing local authorities to ensure they will follow the revised guidance and have these charges dropped across the country.
What has been achieved in the last year has been fantastic, however there is still much to be done. The cause of MND is still unknown; people are still dying from MND and those living with MND deserve better care and support. What Gordon has done for MND awareness in a short space of time is testament to his courage and determination in the face of this cruel disease, but the fight must continue until a cure is found.
Gemma Bradley is communications officer with MND Scotland