Brave Frank’s hospice hope
Patient tells of his motor neurone fight
The staff understand my condition and are able to discuss and assist when necessary Frank Lyons
Just one month after being involved in a global campaign to raise awareness of motor neurone disease, Frank Lyons was diagnosed with the condition.
The one-time town planner in East Kilbride was enjoying life in the sunshine in Australia and took part in the world-famous ice-bucket challenge in 2014.
Frank, 64, participated in the fundraiser with his wife of more than 40 years, Rae, taking great joy in pouring freezing water over her husband’s head.
The challenge aimed to raise awareness of MND and its symptoms. Just weeks later, however, devastated Frank received life-changing news that he had the neurological disorder.
Frank – who was initially having trouble swallowing food and was starting to slur his words – underwent months of tests which ruled out other conditions before MND was confirmed.
The dad-of-two travelled back from Australia to live in Hamilton after the diagnosis – and has spent time at East Kilbride’s Kilbryde Hospice during the past six months.
Frank is unable to communicate verbally and, instead, uses apparatus known as ‘BiPap’ to improve his breathing capacity. The machine helps push air down into his lungs to help him in his day-to-day life.
He said he enjoyed working as a town planner, as well as working in the housing association sector to deliver affordable housing, as he “just loved to help people” and raised money for charity before the illness.
However, the diagnosis of MND cast a shadow over his world.
“When I first found out I was depressed,” he told the News. “I didn’t know what to do.
“It was very hard for everyone in my family.
“Having this ventilator on 24/7 has made a difference.
“MND has a very different range of symptoms and I feel very lucky that I can still get about and engage with people.”
Now Frank is pleading to be allowed to die at the place where he has found comfort and peace – Kilbryde Hospice.
The Donna Mortimer Ballantyne in-patient unit has been lying empty for nearly two years – and Frank would like the facility to be opened for the good of himself and other patients.
Currently, Frank travels across South Lanarkshire to the hospice, and Rae visits the facility for a carer’s course.
If Frank was to use a hospice, it would be Airdrie’s St Andrew’s Hospice – but he wants to be with the staff at Kilbryde who know him so well.
He said: “From the minute we first visited the hospice we found the staff we spoke to had empathy, understanding and commitment.
“The staff fully understand my condition and are able to discuss and assist when necessary.
“That level of support is a key for me in terms of my condition and my feelings.
“Having that range of involvement makes me feel happy and content.
“Given our comfort and view of the hospice, I would like to be able to stay there towards the end of my illness.
“At the hospice, they clearly understood my symptoms and could support me.
“Time is going on and on and the beds are still not commissioned.
“It would be a reassurance that the staff around me would know my needs.
“My care plan is that I would like to stay with the staff here.”
Margaret Mary-Cowan, the clinical service manager at Kilbryde Hospice, called for the wing to be officially opened in time for Frank.
She said: “The staff here know Frank so well now. We want patients to be able to stay here if they choose to. It’s more about what their wishes are.
“We are in talks with the Social Lanarkshire Health and Social Care Partnership about opening the facility.”
Craig Cunningham, head of commissioning and performance at South Lanarkshire Health and Social Care Partnership, said: “Kilbryde Hospice currently offers day care for patients rather than inpatient beds.
“A review is under way to reach agreement with all the relevant parties on a future model of hospice bed provision across Lanarkshire.
“Colleagues from Kilbryde Hospice have been, and will continue to be, key partners in that process.
“No decisions have been made at this time.”