Our second Rewrite the Future report – launched today – unfortunately shows that there has been little improvement in the integration of health and social care for people with neurological conditions in Scotland. In this blog post, Thomas McGreevy expresses his frustration at the barriers he’s faced over the past five years while trying to get his wife Dee the neurological care and support she needs.
Some days I struggle to believe that my wife’s life has been reduced to mere existence.
Dee, who is in her 50s, first became ill in March 2012 and since then I have battled with the system to get her the care she needs.
Before getting ill, Dee worked as a brilliant and caring nurse, but for the past two years she has lived in an older people’s care home. Dee was a nursing sister in hospitals and, after we had the kids, she worked in care homes and a local hospice. She was only ever interested in nursing, even when there were opportunities to do other things like join management.
When we first knew something was wrong
One day, following a year of headaches, Dee passed out, resulting in an emergency ambulance trip from our home in Bothwell, South Lanarkshire, to Glasgow’s Southern General Hospital.
After that, everything was like a blur. She was found to have two brain tumours, but the surgery to remove these proved successful. She seemed to be getting better; so much so that Dee visited the hospice where she worked to tell them it wouldn’t be long before she’d be back – not knowing this was never to be.
Returning from work one day, I found Dee waiting to go Christmas shopping with her pals, but they never turned up. It turned out there was no trip planned that day – Dee had got it totally wrong. Alarm bells began to ring...
It turned out Dee had contracted hydrocephalus and had to have a shunt fitted to drain fluid from her brain. Shortly afterwards, Dee’s balance went and she became disorientated, so I took her back to the Southern General. Her condition deteriorated until she became cognitively impaired and lost much of her ability to communicate.
Several tests were carried out and neurological disorders were offered as potential explanations, but these proved inconclusive and Dee’s condition is still undiagnosed today.
The healthcare merry-go-round
Dee spent 12 weeks in the hospital’s Physical Disability Rehabilitation Unit. At the end of her stay, there had been a small improvement in her ability to move, but she struggled to talk and her swallowing was still poor.
It was then that one of the physiotherapists in the unit asked me what Dee’s social worker was advising about next steps. This was the first I’d heard of a social worker – no-one had been in touch or explained things to us.
Dee was sent back to a general neurological ward, but here she didn’t get any therapy and was left in her bed, while I was assigned a social worker and started to prepare for Dee’s future.
This was when we found out that Dee would never come home: an occupational therapist advised that our house, even with adaptations, would never meet Dee’s needs.
In the meantime, while Dee was in the ward, the only medical intervention she got was genetic testing, to try to get a diagnosis and highlight any risk of my sons getting the same condition. These tests, too, were inconclusive.
Our next stop was Hairmyres Hospital where Dee stayed for around a year – again, with no therapy or interventions. I spent that time trying to sort out legal affairs and ended up pursuing guardianship, on the advice of my social worker.
As a layperson, working out how to get the support we so desperately need from the health and care system has been incredibly stressful and frustrating. And this is on top of trying to hold down a full-time job, running a house, looking after our two sons, and going through the courts to obtain guardianship for Dee.
But then hospital staff threw another curve ball and asked me what I was doing about getting Dee into a nursing home. This was when it truly hit home and I realised what our future would be like: I’d be at home and Dee, at the age of 56, would be in an old people’s home for the rest of her life.
Finding a home for Dee
Determined to remain resilient, I got permission from work to take extended lunches so I could search for a suitable care home. However, Dee’s age and the fact she had a nasal gastric tube for fluids and nutrition were barriers. Eventually, with a bit of encouragement and new training for the nursing staff that would be caring for her, Dee moved into her first care home surrounded by elderly residents.
Two years later, now 58, Dee is in another care home that’s much closer to the family home. She is partially paralysed, doubly incontinent, unable to communicate in any meaningful way, and totally dependent on others for everything.
The problem is, because Dee hasn’t got a diagnosis, no-one has known what to do for her; it's as if every door has been shut and she’s been left to her own devices. I feel as if she’s been written off by the system, and it’s down to me to fight her corner, so I’ve taken voluntary redundancy. Balancing work with all I do for Dee was, unfortunately, just not possible.
While I can’t fault the care she receives in her current care home, she is basically languishing in her room 24 hours a day, staring at the four walls. I want her to get some enjoyment out of life – she would benefit from physiotherapy, recreational therapy or some other kind of stimulation – but there’s nothing available. It’s like I’m going round in circles.
Sometimes I wish it were me: if it were the other way round and I had a neurological condition, the situation would be completely different because Dee knows the system. As a former central heating engineer and university librarian, I’d never set foot in a care home in my life!
I can tell Dee thinks I’ve tried everything and I’ve long given up expecting any kind of miracle.
"The system my wife devoted her life to has let her down"
All I want is for my wife to have some quality of life. To see Dee suffer is so distressing but, on top of that, trying to find my way round the system to get support for my wife and my family has been incredibly stressful.
It shouldn’t matter, but I can’t help feeling that the system my wife devoted her life to has, sadly, let her down when she needs it most. The NHS is absolutely wonderful, but every now and then people fall through the cracks and simply don’t get the right care.
That’s why I think the Scottish Government should listen to Sue Ryder’s Rewrite the Future campaign, and take action to make life better for all people with neurological conditions by putting in place the readily available, specialist care that is so desperately needed.