This week the charity has been working with BBC News to highlight the situation in Scottish care which has left people with MND in a difficult position.
Geoffrey Alexander (66) from Edinburgh is one of many Scots whose care has been reduced or removed completely. This is due to staffing shortages across the sector.
Geoffrey, who was diagnosed with motor neurone disease (MND) on Christmas Eve 2019, is now virtually immobile from the neck down. Geoffrey had been relying on two professional carers, four times a day, to get in and out of bed, washed, dressed and fed each day.
Earlier this month Geoffrey was notified that his care would be withdrawn in just four days’ time.
Geoffrey said: “I was sitting down to my birthday lunch on Monday 4th October when I received a phone call informing me that I had until the end of Friday to find an alternative care package.
“Unfortunately, even with Self Directed Support, which essentially allows you to employ your own carers, I wouldn’t have been able to find anyone, since the issue in care at the moment is around finding professional care workers.
“This essentially meant was that I couldn’t stay in my home any longer and receive care in the community; instead, I’d have to move into a care home. This is particularly hard because MND Scotland worked so hard on my behalf to secure an accessible, ground-floor flat for me to live in, close to my family support network.”
Despite his situation, Geoffrey is incredibly bright and has only positive things to say about the carers who have worked with him.
He continued: “The care I have received at home, and at the care home, has been excellent. The people looking after me are incredibly passionate, professional and caring. That said, I would have preferred to stay at home if I could have.
“Even the care home is short staffed and trying their best to cope under enormous pressure. There is even agency staff coming in to help them out where possible. All of this going on unfortunately means that you often don’t have anyone with you and, because I can’t turn a page in a book or otherwise move my hands beyond a slight twitch, it means I spend a lot of my time in silent contemplation.
“I have been supported immensely by my brothers, Titus and Marius, but I think it’s a false economy for it to be suggested that they give up their other responsibilities to look after their brother full time. More needs to be done to attract people into the care profession.”
Susan Webster, Head of Policy and Campaigns at MND Scotland, said: "Social care is in crisis and action must be taken now.
“Geoffrey is staying in a care home for no other reason than there aren’t enough care workers to look after him at home. This is even more tragic because, with MND Scotland's help, he managed to secure a rare and invaluable accessible home, allowing him to have a better quality of life. Geoffrey must be enabled to return to his home as soon as possible.
“The Scottish Government has committed to setting up a National Care Service and are consulting on what this should look like. However, this will take years to implement. With an average life expectancy of just 18 months from diagnosis, people with MND don't have time to wait.
“Securing a sustainable care workforce has been a problem for a long time. Pay as well as terms and conditions for those working in the care sector must be urgently addressed.”
Susan Webster | Head of Policy and Campaigns