Colin, who lives in Aberdeenshire, was diagnosed with the rapidly progressing terminal illness in 2016 and is at high risk of infection if he contracts Covid-19. He’s now backing MND Scotland’s call to the Scottish Government to ‘Get MND on the List’.
Currently only people with MND who have problems with their swallowing and breathing are on the shielding list in Scotland, which means many people with MND are missing out on vital support while they self-isolate.
Colin and his wife Shirley have both been on lockdown for over five weeks, not going beyond their garden fence, for fear of contracting Covid-19.
Despite being advised by his GP to self-isolate for 12 weeks, Colin has not been added to the shielding list because he doesn’t meet the current criteria. This means he does not have access to services such as priority supermarket delivery slots, or emergency food and medicine parcels.
With Northern Ireland’s Chief Medical Officer deviating from the UK guidance and now including all people with MND on their shielding list, charity MND Scotland is urging the Scottish Government to also take action.
Colin told us, "I have MND, but I don’t have any issues with my breathing, so I have not been placed on the shielding list. I've been self-isolating for over 5 weeks because my GP told me that under no circumstances should I leave the house. My wife Shirley is doing the same because she is caring for me and scared of bringing Covid-19 into our home.
“We're relying on our daughter Stephanie for food deliveries. However, she is already under enormous pressure, working full-time from home and looking after our 20-month-old granddaughter. On top of all this, Stephanie has to fit in grocery shopping trips for us because it is virtually impossible to get a supermarket delivery slot without being given priority. Slots aren’t guaranteed and are infrequent, plus it’s not ideal to spend so much time trying to find openings.
“I have managed to go through the local council for assistance in having my medications delivered. This has been a huge relief, but I don’t know if everyone with MND will have the same support locally. We have a great relationship with our pharmacy and are thankful that our local taxi firm is volunteering to do deliveries for free.
“I am grateful for the help we are receiving and don’t want to do an injustice to those who are providing assistance. However, being realistic I know that those suffering from MND are going to have to continue to (“self”) shield for a considerable time to come, and well beyond the 90 days originally stipulated. In which case I believe strongly that this must be recognised and all sufferers added to the list to enable support for the coming months (if not longer!).
“I'm most worried about what will happen if my daughter can no longer support us - we have no one else to ask. If we could get a priority slot for food deliveries now, it would help take the pressure off my daughter, and also take away the stress of thinking about what we will do if she can no longer help us.
“For me and the other sufferers of this devastating and crippling condition the future is dire. With the arrival of this pandemic it has just thrown our future as it was, into complete disarray. To then spend what time we have left scratching around to survive is beyond comprehension.
"I am also conscious of the additional burden that MND sufferers, already in a fragile state and not on the list will bring to the system, especially the NHS should they contract Covid-19. Especially if they and their carers are forced to shorten their isolation in order to access basic necessities.”
Craig Stockton, MND Scotland’s chief executive, said “Many people affected by MND are extremely concerned about contracting Covid-19 and are doing all that they can to protect themselves. This includes, for many, self-isolating and not leaving their homes. They are aware that this is an onerous task, but it is one that they feel necessary to keep themselves safe.
“We welcome the fact that those with MND who have swallowing and breathing difficulties have been added to the list, however we are deeply concerned for those affected by MND who have not been included.
“We’re urging the Scottish Government to define everyone living with MND as being 'extremely vulnerable' as a matter of urgency, ensuring that those affected in Scotland have access to the vital support they may need during this worrying time.”
Find out how you can support MND Scotland’s campaign to ‘Get MND on The List’.
Colin Jones | Living with MND