WHEN she recovered from surgery after being diagnosed with not one but two separate brain tumours, Dee McGreevy visited her work to chat with her colleagues and tell them she would soon be back.

The milestone moment for the former nurse and her husband Thomas came after a year where her life had been blighted by increasingly severe headaches, and finally an emergency dash to hospital where her cancer diagnosis was confirmed.

Going back to her workplace offered a glimpse of a bright future for the couple and their two sons, and a return to normalcy after all the turmoil which came with her ill health.

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Yet two years later the 56-year-old has been reduced to a “mere existence” as she languishes in a care home, her husband says, after her condition declined dramatically, baffling doctors with its progression.

Now her husband is calling for better care for patients with neurological conditions, saying that the medical profession simply left the family to fend for themselves when Mrs McGreevy’s condition worsened.

“It’s unbelievable that this situation is still possible, in 2017. My wife’s life has been reduced to a mere existence," he said.

“I am still crying out to be heard and still fighting the system for a better quality of life for Dee.

“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.”

After her surgery Mrs McGreevy had seemed on the road to recovery, but alarm bells began to ring one day when her husband returned home to find her waiting to go Christmas shopping with friends.

It turned out there was no trip planned that day, and Mrs McGreevy had become confused.

A return to Glasgow’s Southern General Hospital confirmed she had a build-up of fluid on the brain, which had to be drained.

But afterwards she began to deteriorate. Mr McGreevy said: “She became cognitively impaired and lost much of her ability to communicate. She basically developed a less severe version of what she’s got now.”

Tests were carried out and neurological disorders were offered as explanations, but these proved inconclusive and her condition remains officially undiagnosed. 

During her stay in hospital, which lasted more than a year, Mrs McGreevy was initially given physical therapy to help her regain movement, but this soon petered out.

In the meantime, her husband learned he should be speaking with a social worker, and had to devote his own time to looking for a care home which could cope with his wife’s complex needs.

Eventually he took early retirement from his job as a librarian at the University of the West of Scotland to devote his time to his wife and getting her the physical and recreational therapies she needs.

Mr McGreevy said: “The problem is, because Dee hasn’t got a diagnosis no-one has known what to do for her and it feels as if every door has been shut and she’s been left to her own devices.

“I can’t fault the care provided by the care home but it doesn’t cater to what I feel are Dee’s needs. At the minute she is in a room 24 hours a day staring at the four walls.”

He added: “I just want Dee to have some kind of stimulation but I’m going round in circles trying to get the medical profession to show any interest in Dee’s care.

“If it had been the other way round, and I’d had the problem, the situation would have been completely different, as Dee knows the system.

"I’d never been in a care home in my life – I’d been a central heating engineer and then a university librarian.

“I can tell Dee thinks I’ve tried everything and I’ve long given up expecting any kind of miracle. All I want though is for my wife to have some quality of life.”

Care plans needed 'urgently'

PEOPLE with neurological disorders are suffering needlessly because of a lack of proper care across Scotland, a report has said.

A study by the health and social care charity Sue Ryder found that only five of Scotland’s health boards and five local authorities have a specialist services in place to deal with chronic conditions such as Parkinson’s disease, multiple sclerosis and motor neurone disease.

The report highlights says there is an “urgent” need to not only improve community care and support but to ensure those people who need to move into a care home get the right kind of specialist neurological care.

Pamela MacKenzie, Director of Neurological Services and Scotland at Sue Ryder said: “Neurological conditions can strike anyone, at any time, having a massive impact on them and their families.

“As well as coping with the financial and emotional burden they also have to face a difficult struggle to get the specialist care they need whether in their own home or in residential care.”

She added: “To put this right, the Scottish Government needs to show leadership and put in place a strategy for all the health and social care services that people with neurological conditions need. Otherwise they will continue to feel written off and that simply isn’t good enough.”

Minister for Public Health Aileen Campbell said: “We want to ensure that people living with neurological conditions have consistent access to the best possible care and support, which is why we have started the development of Scotland’s first national action plan on neurological conditions to help drive improvements.

“Whilst this work is at an early stage, the new plan will support the development of new neurological condition care standards which could be adopted across health and integrated community services.”

“As the First Minister announced in the Programme for Government, we will be extending free personal care to all those under 65 assessed as needing it, which will support many people with neurological conditions receiving care in their own home.”