Stuart, a former mechanical fitter at Aggreko, is married to wife Lorraine (37), who lives with the crippling side-effects of type 1 diabetes. Lorraine’s condition has led to 17 operations and was also responsible for her losing her vision in 2013 – resulting in 5 corrective eye operations. The condition also means that she has been left unable to feel the bottom of her legs.
Their eldest of two daughters, Kaci (16), also lives with the severe effects of Cystic Fibrosis. Kaci’s health means that her body cannot absorb fat and her immune system is extremely weak. Kaci must take at least 46 pills per day and her health means that she must have her own room as coming into contact with somebody with a cold or flu could kill her.
But despite Lorraine and Kaci’s health needs, the family were finally pushed to breaking point in 2017 when Stuart was told that he had MND and that he had approximately two-and-a-half years left to live.
MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided.
Stuart said: “It started with a slight slur in my speech in around February last year. I then noticed that, when I was walking, one of my feet were dropping down. I knew something wasn’t quite right so we went to the GP straight away.
“Lorraine and the kids didn’t notice anything wrong with my speech at first, but when I came back from a work trip in Australia, Lorraine and Kaci noticed that I was mumbling and bumbling quite a bit. I went for blood tests, x-rays and a CT scan at the Vale of Leven Hospital before being referred to a neurologist. It was a few weeks later that the doctor told us that I had MND.”
Lorraine said: “With myself and Kaci not being well I had to ask - how long? The doctor said around two-and-a-half years. We were totally devastated. I never thought anything like this would happen. I thought maybe he had MS or something like that. When the doctor said what it was, Stuart just said ‘Can I go back to work now’ and she just said ‘no’.”
Stuart’s shocking diagnosis meant that he had little choice but to go on long-term sick leave, immediately plunging the family into financial uncertainty.
“We had already been on the waiting list for housing for over 4 years at this point, based on Kaci’s health needs, but when Stuart was diagnosed we decided to reach out to our MSP, Jackie Bailie. Thanks to a letter she sent we were awarded maximum points, but the Council told us that this was based on Kaci’s health, not Stuart’s.”
Following Stuart’s diagnosis, the couple began pleading with Argyll & Bute Council to recognise the seriousness of Stuart’s MND diagnosis and urgently prioritise the family for accessible housing.
“At this point we had already been waiting for years, so when we found out that Stuart’s MND diagnosis didn’t essentially count for anything, we were emotionally and financially at the end of our rope.”
“It’s terrible. We were told that, despite Stuart’s condition, we were on the waiting list for housing based solely on Kaci’s credit. Stuart’s condition means that we can only be considered for ground-floor flats. So they’re taking Stuart into consideration for the kind of property we need, but not for how urgently we need it. It doesn’t seem right.
“We’ve explained to them that we can make any adaptations ourselves, be it a stair lift or a wet room, but they can’t seem to make up their minds. We have a big family support network who have said that they’ll help us, even by paying for adaptations out of their own pockets if need be – all we need is a house.”
Since Stuart was diagnosed with MND the family have been applying for suitable housing across Argyll & Bute within a reasonable distance to their existing support network.
“We’ve been dealing with the same team at the Council this whole time and we’ve done everything right as far as I can tell, including providing a letter from the doctor in regards to Stuart. But when I got in touch with them they told me that we had only applied for housing in Helensburgh central.
“In fact, I had asked for us to be considered for anything suitable right across Argyll & Bute. Even on my phone calls to them I would ask them to confirm the areas that we had selected.”
Having to deal with the pressures of finding suitable housing, in addition to dealing with Stuart and Kaci’s health needs, has taken its toll on the whole family, particularly Lorraine.
“I felt suicidal. When I think of everything that Stuart’s going through and then I think that he’s not going to be here, I don’t know where I’m going to go with the girls because we don’t have any money, so I’m totally at the end of my rope. Other than Stuart’s health, that’s the only other thing that worries me. Where are we going to live? If we had somewhere that we could settle in, it’s like all of the other mundane stuff is done, it’s settled, we don’t have to worry about that and we can just focus on taking care of Stuart.”
“I just don’t think they understand. You’ve got all these things going on and you just need somewhere to turn, somewhere to settle.
“We’re not any better than anybody else but, over a lot of years, we’ve been through a lot. I’ve had 17 operations so far, Kaci’s been not well and now this. We’ve got our other daughter to think about as well. Apart from our health, if we could get a house, that would be our problem solved. And I just don’t think they get it. We need help.”
Craig Stockton, Chief Executive of MND Scotland, said: “I would like to thank Stuart and Lorraine for speaking out to highlight some of the pressures associated with an MND diagnosis.
“Given the limited life expectancy of MND, we are urging Argyll & Bute Council to make the Morris family a priority and move them to the top of the list. Nobody affected by MND should have to go through this kind of stress to get access to suitable social housing.
“As a charity, MND Scotland has been working closely with the Morris family to offer them as much support as possible. Our Welfare and Benefits team have helped the family gain access to some financial support, but in our view, only a suitable home will allow the family to get the peace of mind they so desperately need.
“In our correspondence with the local authority, we have been informed that there are currently 43 applicants with the maximum of 200 points, most of which are for medical reasons, and that there are no vacant properties at present.
“It is our view that more needs to be done, across all local authorities, to ensure that there is an appropriate level of housing available for families who are in desperate circumstances.”
Jackie Bailie MSP said: “I have been working with the Morris family for almost two years, and so far Argyll & Bute Community Housing Association (ACHA) have been unable to provide suitable accommodation.
“The family’s situation is getting desperate, their eldest daughter suffers from Cystic Fibrosis and is living in a house which is damp and this heightens her already severe symptoms. Just this year Mr Morris was diagnosed with Motor Neurone Disease, which is a life limiting condition. There is now a huge concern about whether or not they will be able to keep a roof over their heads with his income decreasing.
“I appreciate that ACHA are under severe pressure with waiting lists expanding all the time but when the condition of a family’s current home is affecting their child’s health and Mr Morris has a life limiting condition, it is entirely right that they are given the highest priority.”
If you're family has been affected by MND and you're struggling with housing - please get in touch with our Advocacy Service.
Craig Stockton | Chief Executive
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