Respiratory problems are a major cause of death for people with motor neuron disease (MND). This very fact alone meant that I assumed everyone with MND would automatically be classified as extremely clinically vulnerable by the NHS during the coronavirus pandemic. I was shocked to discover that this is not the case.
Undoubtedly this was an oversight. That is entirely understandable when the government is dealing with single greatest challenge this country has faced in many years. Yet that single oversight is having a huge impact on the lives of thousands of MND sufferers throughout the country. So I am calling on the health secretary, Matt Hancock, to rectify the mistake as soon as possible.
Being on the extremely clinically vulnerable shielding list automatically entitles you to a range of support. For example it ensures you receive help with groceries and medication deliveries, if you need it. Those are things that a lot of people would benefit from, but for people with MND it really is life and death if you can avoid queueing up in a supermarket or pharmacy. I have been told in no uncertain terms by my medical team that catching coronavirus is a one-way ticket to being hooked up to a ventilator or worse.
But this is not about me personally. I am incredibly lucky to live on a farm with wide open space for me to walk around and have plenty of tasks to occupy myself with. I also have my family around me who can organise my medications and shopping. But I know there are lots of people with MND who are not so fortunate. I always think about Mrs Smith living with MND by herself in a third-floor flat.
I am scared enough of MND living in an isolated environment so I can only imagine how terrifying it must be for someone like her. Getting your shopping delivered to your door may be a life saver. This is not about saying MND is worse or better than any other condition on the list. This is just about common sense.
Speaking to the guys at the MND Association, they tell me in England, you can self-register as being extremely vulnerable online, but this is often a laborious and lengthy process and you also can’t self register in Wales. Why are you putting hurdles in the way of people who clearly need help? Maybe not everyone with MND will need this assistance right away, but it is not a static disease. Your condition can deteriorate rapidly. We do not have time on our side to go through a tonne of paperwork and delay.
I am also told by the MND Association that a lot of people are worsening because they cannot access their usual levels of treatment. Some people are no longer receiving their medications. In my own case that means I am no longer able to attend my chiropractor and physio sessions or go swimming. Meanwhile, all the incredibly exciting research projects that we started in January have been put on hold for three or four months.
Everyone – and not just MND sufferers – will be feeling the effects of being on lockdown. The best advice I have is to give yourself something to look forward to when the lockdown eventually ends. Ever since I was diagnosed with MND I have always tried to give myself something to focus on whether that was going on the 2017 Lions tour, the Kenny Logan dinner, the Scotland v New Zealand game or last year’s Sports Personality of the Year Awards.
Each time I reach one of those landmarks I think of it as scoring another goal against MND. I am turning 50 in July, which I am hoping to make a big one, and then the good lady is following suit in October.
In the meantime, I am just trying to keep myself as busy as possible. Lambing is the main activity on the farm at the moment, but I can’t get involved in that as much as I used to. But we also have all the grass to prepare so we hook up this big machine behind my tractor and away we go. That gives me a bit of purpose. I listen to Radio Borders and go up and down the field and am very happy. In the afternoon I get a wee bit tired from the morning work so I sit back get Netflix on the telly. I try to count my blessings every day that I can do all these things.
I just hope Mr Hancock hears the message I am sending through this column and on social media for all those who are in a less privileged position. Sometimes the smallest actions can have the greatest impact.