A couple with plans to marry were robbed of their future together after the fiancé was diagnosed with a rare form of motor neurone disease just six weeks before he died. Christine Ridout and Stuart Lewis had been trying to get to the bottom of his recent breathing difficulties but were told by doctors his 'unknown' condition was 'not the end of the world' and put it down to anxiety.
Christine and Lewis met through work at the former mental health hospital Ty Catrin but only had 18 short months together before Stuart was informed he had Amyotrophic lateral sclerosis (ALS), a form of MND. The terrible disease which weakens the brain and nerves over time inevitably shortens life span and eventually leads to death, Wales Online reports.
Sadly, 45-year-old Stuart passed away from the condition on May 15 - only six weeks after his heart breaking diagnosis. Although Christine and Stuart's family knew that his diagnosis would eventually take his life, they claimed medics misdiagnosed him for more than a month after he first visited his GP with symptoms.
They also complained the delay negatively affected Stuart's quality of life during his last few weeks. The health board has since issued an apology to the family and are working alongside them to provide them with answers.
Christine from Cardiff revealed Stuart had visited his GP in mid-February with concerns regarding breathing difficulties. The 39-year-old said: "They told him he had anxiety at first, but Stuart said he knew it wasn't anxiety.
"They took bloods and they didn’t find anything, but he couldn’t breathe properly when he lay down in bed and he couldn’t lay flat on his back. They sent him for an x-ray at the University Hospital of Wales in Cardiff and found that one lung was pushed right up to the top of his chest and there was a blockage on the other side.
"When the doctor had that back, he referred him to Llandough hospital and he went to a lung clinic." Christine said Stuart's doctor informed him he may be suffering from lung cancer and to prepare himself for the news.
However after a two-hour-late appointment at a lung clinic the couple were left with more questions than answers after medics confirmed Stuart did not have lung cancer. The 45-year-old had developed some weakness in his neck and was struggling to keep his head up but doctors seemed unconcerned as they assured that his undiagnosed condition was 'not the end of the world'.
Christine said: "[The consultant] was really abrupt to Stuart. She said he didn't have lung cancer, and that she didn't know why he had been sent to her.
"She didn’t do any assessment on him and she didn’t listen. She said it’s just that his diaphragm is weak and not working correctly.
"She told him he would need to lose weight and do some exercise with physio. His stomach was extended because his diaphragm was not working properly, but he had lost lots of weight and muscle in his arms - but she didn’t look."
Both unexplained weight loss and weakness of the diaphragm are potential symptoms of ALS. The pair who were left in shock by the experience were told that Stuart would be seen again at the clinic on Monday for scans but later found out it was a 'non-urgent referral'.
Stuart's concerned mother rang the department up after the couple received no further news and Stuart eventually received his fatal diagnosis a whole month after he saw the first consultant. Christine said the doctors were 'very concerned' about the scan results.
She added: "They referred him to a [second consultant] and he was absolutely brilliant with him. He spent a few hours with Stuart and assessed him properly, he seemed to know what was wrong with Stuart straight away.
"This was a whole month after he saw the first consultant. It wouldn't have changed the prognosis, but Stuart would have had a better quality of life." In the hours leading up to his sudden tragic death, Christine revealed that her partner had been in good spirits and that the ventilator was helping his breathing.
Christine said: "He had friends staying with him on the Friday and the Saturday. They were watching sport on the television and he had a brilliant weekend.
"He was giggling and on such a high, it was like he had a little lift. He was smiling and he didn’t look like he was in any discomfort.
"In the morning his friend knocked my door to say he’d gone. That’s the shock it came at.
"I would never have looked at him that night and thought this would happen." His devastated mother, Susan, 72, said: "It was kind for Stuart because he went in his sleep, but it wasn’t kind for us."
Although the family are well aware that Stuart's life was going to be cut short by his illness, they have argued that if he had been diagnosed sooner, the situation could have been handled with better. Christine and Susan revealed Stuart had booked an appointment with a specialist to discuss his prognosis and potentially going on a medication called riluzole which can help slightly delay the effects of MND.
Christine said: "The ending would never have changed, but if people had listened and done their job from the beginning, we would have had a time scale so we could have been there during his final moments."
Christine and Susan are now aiming to raise awareness about ALS and what they claim happened to Stuart to help other people spot the signs. Susan paid tribute to her late son who she had a close bond with and praised him for his 'caring' nature at work where everyone 'loved' him.
Christine described Stuart as her best friend who 'really looked after her' and was 'full of life'. She said he loved the Christmas period and was hopeful to spend it with his family this year.
A spokesperson for Cardiff and Vale University Health Board, said: “We apologise that Stuart’s family feel let down by the care he received - our thoughts are with them at this difficult time. The Health Board has been in regular contact with the family to explore and investigate their questions through the formal concerns process. We thank them for engaging with us in relation to this and would welcome the opportunity to meet with them to discuss the review findings on completion.”
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