MND Scotland highlights lack of care provision

MND Scotland has highlighted a lack of emergency care after a man with Motor Neurone Disease (MND) was found sleeping on his floor overnight after experiencing multiple falls.

Dean Barrett (48), who served in the armed forces for 22 years, is the primary carer for his brother, Richard Barrett (50), a former self-employed painter and decorator who was diagnosed with the terminal illness in 2019.

In February, Dean reached out to MND Scotland’s specialist advocacy team, who had previously helped secure an accessible home for Richard. Dean explained that, following a care assessment by the local authority in January, Richard had been refused care, based on the fact that he was then able to walk from his door to his kitchen.

In the last weeks, Richard’s mobility has reduced significantly and Dean, who was in lock-down with a suspected case of Coronavirus, sounded the alarm after his self-isolation left Richard with no care at all.

Dean said: “We’ve been applying for care for months, but we were told that Richard wasn’t eligible for care, because his situation wasn’t severe enough. Richard has a rapidly progressive form of MND and his condition has deteriorated very quickly. Now he can barely walk, he’s lost the use of about 90% of his hands, and he needs help doing pretty much everything.

“We’ve asked for extra care, but we’ve been told that it could be months before this is in place. Richard’s since had two severe falls, the last of which left him on the floor all night. What’s really distressing is that, because I have a suspected case of Coronavirus, it might kill him if I go near him. Because we don’t have any care in place, and I’m Richard’s only family, my 66-year-old mother-in-law had to go round and try to pick Richard up on her own.

“When I began self-isolating, due to Coronavirus, I called social services to ask if they could send a carer by, once in the morning and once in the evening, just to check-up on him in the short-term. I was told no.

“The situation is completely unacceptable, and we’ve been told that no emergency care is available either. It’s a damning indictment if, under the slightest strain, the entire care system buckles. We need to do so much better for the people who rely on others to care for them.”

Craig Stockton, Chief Executive of MND Scotland, said: “Our hearts go out to Dean, and his brother Richard, and I’m grateful that our advocacy team has stepped in once again to support this family, and highlight this awful situation.

“We recognise the current public health emergency, and the strain the care system is currently under, but it’s also very disturbing to hear that a vulnerable person, with a terminal illness, has been left in this potentially life-threatening situation.

“We have long campaigned for people with MND to get fast-tracked access to care, and for a plan to be put into place early, due to the rapidly progressing nature of MND.

“We made the local authority aware of this, during the initial care referral in January, which was denied. As a result, we are now in a situation where we are firefighting, when this could have been under control, had the team recognised the nature of MND and planned ahead for Richard’s care.

“In these difficult times we need to ensure that the most vulnerable in society are cared for. We will continue to support the family during this emergency situation and we urge the local authority to find a solution that safeguards Mr Barrett.”