The family of a young Scots twin who tragically died just 13 days after being diagnosed with Stage 4 bowel cancer have hit out at his 'neglectful lack of care'.
Ryan Brown was found to have a 15x12cm mass in his bowel with further evidence of the disease in his liver and lymph nodes on May 1, after vomiting faecal matter.
The 23-year-old’s parents were forced to hear the devastating news on a FaceTime call as they were on holiday in Tenerife at the time of their son’s hospital admission.
His devoted twin sister Hope was by his side at Wishaw General Hospital as medics discussed chemotherapy and surgery before later declaring he was too sick for further treatment.
Ryan, who was just weeks away from graduating university, was placed into hospice care and passed away with his family by side in the early hours of May 14.
Hope, who has now lost her only sibling, has hit out at the missed opportunities to diagnose her brother, who had suffered from ulcerative colitis since the age of 12.
Patients with the painful inflammatory condition are at an increased risk of developing cancer - with Ryan’s chances increased due to a family history of the disease.
Grieving sister Hope, 23, from Harthill, has now spoken out in a bid to raise awareness of ulcerative colitis while branding Ryan’s lack of testing as “total neglect”.
She said: “We want answers. We want to know why Ryan wasn’t treated properly.
“Ryan called me on the 1st of May asking me to go to the hospital because they wanted a family member to come in.
“Our mum and dad were actually in Tenerife at the time so we had them on a FaceTime call. We thought it was to discuss surgery with him possibly getting a stoma bag.
“So I went in and they told us that Ryan had cancer.
“The surgeon that we spoke to totally downplayed it. He made out that it was just a wee bit of cancer, and he’d get some chemo and surgery to remove it. We didn’t think it sounded too serious
“On the 3rd of May, his consultant came to see him and that’s when he told Ryan how serious actually was. He had a 15x12cm tumour in his bowel, which is huge, and he had another one in the other side of his bowel.
“It had gone right through his lymph nodes and it was right through seven sections of his liver. Obviously they couldn’t operate because it was like sprinkles of sand right through his liver.
“We were told the plans had changed and he was going to go to Monklands Hospital in Airdrie to get chemo but they wanted to delay operating.
“By the end of the week, it then became that he was going to go to Beatson in Glasgow because they’re the experts and can give him chemo there.
“By Monday the 9th, my mum seemed to have some sort of sixth sense and turned round to one of the nurses and said ‘Ryan’s too sick to get chemo isn’t he?’.
“She asked if they were ever planning on telling us. But basically no one wanted to tell us because of his age and they didn’t want to upset us.
“They had to get a doctor out from the Beatson in Glasgow to talk to us. She came out on the 10th and said there was nothing they could do. It was just too late.
“By the 12th, Ryan was moved to St Andrews Hospice in Airdrie. From there, he just went downhill. He was so ill and on Friday he was being sick constantly.
“He passed at 1am on the 14th - 13 days after his diagnosis. He never even had a chance.
“My mum, who has colitis as well, has had two different types of bowel cancer so they should have been looking for it in Ryan.
“Hers was caught at Stage 1 and she went to the Royal Infirmary in Edinburgh where they do scopes every two years.
“So hers was caught really quickly whereas apparently in Lanarkshire, they don’t do it as often. But they should be testing every two years.
“That should be the minimum, regardless of age. Ryan’s last scope was in 2017 so he was due one this year but obviously that was far too late.
“I just feel like it shouldn’t have happened. I’m so annoyed about it. That’s my twin brother and I’ve lost him.”
Ryan had suffered a painful flare up in February last year but was unable to get a face-to-face appointment due to the pandemic.
He continued to suffer from severe headaches and abdominal pain, which left him hunched over in agony, but was prescribed steroids with no additional testing.
His family claim that between February and April, he made 17 phone calls to specialist IBD nurses as he continued to try to get help.
In March this year, he was admitted to hospital where he spent a week receiving steroids through a drip and discharged without a colonoscopy or faecal sample.
He was rushed back in on April 22 after catching coronavirus and was placed on an isolation ward for seven days.
But on April 30, the student began throwing up faecal matter and was rushed for an urgent CT scan over fears his bowel had ruptured.
The following day, Hope was called to be by her brother’s side while medics delivered the heartbreaking news.
She believes there were several missed opportunities to diagnose her brother - who made history as part of the first set of twins born to a liver transplant patient.
Hope explained: “One of my close friends actually has colitis and she was diagnosed at 17. She had the exact same consultant that Ryan had.
“Within two years, she was told that if she didn’t get a stoma bag, she’d end up with bowel cancer. So why wasn’t Ryan given that same treatment?
“When he was in hospital for a week in March, why didn’t they check then? It wouldn’t have gotten rid of the cancer but he might have had an extra couple of weeks or months.
“Or when he went to the doctors last year, why didn’t they do any sort of scans or scopes for him to try and find out what was going on?
“When he was in paediatric care, he used to provide regular samples for testing but that didn’t happen when he was transferred.
“They even tell you if you’ve had colitis for over ten years, the chance of you getting bowel cancer increases.
“So you would have thought they would be regularly testing to monitor and find out. It’s just so frustrating. It’s total neglect.”
Mum Carol Ann and dad Daryl are planning to submit a formal complaint to NHS Lanarkshire while sister Hope will collect his honours degree in electrical and electronic engineering on his behalf.
NHS guidelines state that patients with ulcerative colitis have a higher chance of developing bowel cancer - with the risk increasing over the years.
Sufferers should receive regular check-ups - colonoscopies - to look for signs of cancers from around 10 years after first developing symptoms.
The frequency of testing should increase the longer a patient lives with the condition - ranging from between one to five years - depending on other risk factors including a family history of cancer.
Russell Coulthard, Deputy Director of Acute Services, said: "Our thoughts and sympathies are with the family following the sad death of this young man.
"We would ask the family to get in touch with our patient affairs team at patientaffairs.corporate@lanarkshire.scot.nhs.uk to offer them the opportunity to discuss their concerns with us directly."
A Scottish Government spokesperson said: “Our sympathies are with the family of Mr Brown.
“Our Endoscopy and Urology Diagnostic Recovery and Renewal plan looks to increase capacity and is backed by £70 million. It focuses on key areas such as balancing demand and capacity, workforce training and development and infrastructure.
“Early cancer diagnosis has never been more important which is why we’ve committed a further £20 million to our Detect Cancer Early (DCE) Programme over the parliamentary term, which aims to provide greater public awareness of signs and symptoms of cancer to improve earlier diagnosis rates.”
Scottish Labour MSP Monica Lennon added: "I was saddened to learn of Ryan’s tragic passing and can’t imagine the devastation his parents, Daryl and Carol Ann, and his twin sister, Hope, must feel.
“With Ryan himself having ulcerative colitis and there being a family history of bowel cancer, I agree with his family that he should have had more regular check-ups.
“I will be writing to both NHS Lanarkshire and Humza Yousaf, the Cabinet Secretary for Health and Social Care, for an explanation of the procedures followed in cases such as Ryan’s.”
Hope is raising funds for Crohns & Colitis UK in memory of her brother. To donate, please click here.
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