My caring husband wanted to save others his pain...
Sky News’s political correspondent JOE PIKE was left heartbroken by the death of his husband Gordon Aikman, a political campaigner, four years ago from motor neurone disease aged just 31. Here he writes movingly about Gordon’s Fightback campaign which hel
of pounds for MND charities as people poured iced water all over themselves.the stars had aligned.
In moments of stress and pain, many fall back on what they know best. For Gordon, that was political campaigning.
ON THE Ikea kitchen table in our small Edinburgh flat, he launched “Gordon’s Fightback”. It was a plan for change, and it was ambitious. First, he could not understand why the NHS salary of the MND nurse who visited him at home was being paid through charity: “Why should people have to run marathons and hold bake sales so I can die with dignity?”, he said.
After months of persuading and cajoling, Nicola Sturgeon committed to fund all of Scotland’s MND nurses out of the NHS budget.
She also agreed to Gordon’s demand to double the number of nurses. He was thrilled. This fed into his second, far bigger, aim: to create a research revolution. For people dying from MND, it is the scientists in white lab coats who give hope.
Gordon raised more than £500,000 to fund new studies.
He knew any medical discovery would come too late for him, but he wanted to save future generations from having to face the same pain and suffering.
Many MND patients are desperate to take part in trials. Playing a role in potential scientific advance can be exciting as well as empowering.
By persuading the Scottish Government to fund MND nurses, more of the charity’s cash could go straight into medical research.
By doubling the number of MND nurses, more of their time was freed up to help recruit patients for trials.
Ensuring research can be successful is about far more than answering fundamental questions about this horrendous disease.
It is also about building the infrastructure, expertise, skills and systems to run trials in the UK.
Three years ago, it was very rare to have access to an MND drug trial. Now almost everyone in Scotland has access to the brilliant “Smart MND” clinical research programme.
Centres have also opened across the UK in London, Salford, Southampton, Exeter, Ipswich and West Suffolk.
‘Why should people have to run marathons and hold bake
sales so I can die with dignity?’
GORDON AIKMAN