An MS sufferer whose wife has been left in a wheelchair after a brain bleed is spending their £45,000 life savings on treatment abroad. Scott McPhillimy is desperate to halt his own condition so he can be fit enough to look after her.
He was supported by Suzanne after his MS diagnosis seven years ago but during lockdown, she collapsed in the middle of a work video call after suffering the near-fatal aneurysm. Scott, 34, is flying to a clinic in Mexico next week to start the month-long treatment programme in a bid to stop his wife, who has difficulty communicating, from going into care if his illness progresses.
The ex-police officer, from East Kilbride, said: “Suzanne means everything to me. She is my world. We’ve been together since we were 16 and I would not have got through my MS diagnosis without her.
“She’s been my rock and now I need to be hers. Her near-fatal brain aneurysm has turned our lives upside down and left my wife in a wheelchair with very little speech and in need of 24-hour care.
“Before Suzanne’s brain injury, the uncertainty of my MS only had a direct impact on me. Now I need to think what would happen to her if I deteriorated to the point I was unable to be her primary carer.
“I have felt a slow decline this year with old symptoms reoccurring and I’ve decided it is time for me to take drastic action to secure our future together. I head to Mexico for HSCT (haematopoietic stem cell transplantation) – an aggressive treatment for MS which is only offered by NHS England for patients who meet strict criteria. It isn’t yet offered in Scotland despite being recommended for approval.
“The aim of the treatment is to ‘reset’ the immune system to stop it attacking the central nervous system. It doesn’t repair the damage that has happened but hopefully draws a line in the sand and halts any future damage.
“It isn’t 100 per cent guaranteed but the clinic has had a solid success rate over the last 10 years. I could wait a few years in the hope I could get this treatment on the NHS but by then I could be more disabled and I can’t take that risk. Suzanne needs me and I’m determined not to let her down.
“She’s a fighter and I need to fight for her. If my MS gets worse and I can’t physically look after her, she would need to go into a care home and that would break my heart. It’s a very expensive gamble but it’s worth it."
Scott said the money they had saved could have gone on upgrading their home but it’s better spent on ensuring the couple can remain together for longer. The treatment at the Clinica Ruiz in Puebla, if it works, will save NHS Scotland £300,000 over 15 years as managing his condition costs £20,000 a year.
Suzanne, 34, a senior administrator, was on a Teams call with her colleagues on November 23, 2020, when she collapsed and fell off the bed mid conversation.
Scott, who has raised thousands of pounds for MS Society Scotland through an Arctic trek and abseiling off the Forth Road Bridge, said: “We were both working from home. I was on a call in the office and Suzanne was in the bedroom. I got a text saying my wife had collapsed.
“I hung up my call and ran to the bedroom where Suzanne was unresponsive. She was making a horrible gargling noise and I could hear the blood rushing behind her eyes. I shouted to her colleagues who were still on the video call to get an ambulance.
“They rushed her to the Queen Elizabeth hospital in Glasgow where an A&E consultant told me she’d had a catastrophic bleed on the brain and they were unsure if anything could be done. It was up to the neurosurgeons and they decided to take a gamble on her because of her age – she was only 32 at the time.
"They said if Suzanne survived, she would have life-changing injuries and there was a 40 per cent chance she would be dead within a month. I told them to do everything they could to keep her alive. Before the surgery, her family and I were allowed in to say our goodbyes.
“Miraculously, the surgery went okay, but 36 hours later she developed a massive blood clot on her brain which caused huge swelling and they had to do a decompressive craniectomy.
“This involved removing part of her skull to give the brain room to swell. They cut open a cavity in her abdomen and popped the piece of bone inside to keep it fresh until the swelling went down.
“Suzanne was in a coma for three months and during that time she needed more brain surgeries, including an op to reattach her skull and a shunt to stop a build-up of fluid. It was like putting Humpty Dumpty back together.”
In March, Suzanne was transferred to a rehab unit, where she spent six months before being allowed home last August after Scott fought for a care package which sees two carers coming in four times a day.
Scott, who now works in the civil service, said: “My wife as I knew her died 18 months ago. She’s here but it is not the same Suzanne. She spends most of her time in a wheelchair and can repeat words back to you but she cannot initiate conversation. I need to lift her and transfer her between the bed and the chair. It’s heartbreaking.
“Her sister is a nurse and helps with personal care. She’s been an angel, as has both our mums. I don’t know how I would have got through the last year-and-a-half without them and our other family and friends.
“It’s hard to say how she is in herself as she can’t really tell me. I don’t think she is happy. I wouldn’t be happy in that situation and I have made it really clear to family and friends that if I deteriorate, I don’t want that life.
“Suzanne was fit and healthy. She was a bubbly chatterbox who loved telling long, winding stories. What I wouldn’t give to hear one of these silly wee stories again or hear her singing in the bath. It’s at times like this you realise what you’ve lost. Suzanne’s lost the most but the rest of us have lost her and that’s what hurts as there is a massive hole in all our lives.”
Scott, whose mum will be by his side during his treatment in Mexico, hopes by sharing their heartbreaking story he will highlight that MS and brain aneurysms can strike people at any point in their lives.
He said: “You would think one neurological condition per couple would be enough but the universe had different ideas.
“It is all too easy to get caught up in what you don’t have any more as opposed to appreciating what you still have. Life can change in a blink of an eye and no one tells you when you are leaving the good old days.
“But I’ve still got Suzanne and I’m going to do whatever it takes to keep her here with me.”
- To follow Scott's HSCT journey go to www.instagram.com/challenging_ms
Don't miss the latest news from around Scotland and beyond - Sign up to our daily newsletter here .
