Bowel disease patients' plea to end agony wait for treatment as NHS recovers from Covid

Two thirds (69 per cent) of patients in Scotland waited more than four weeks to be seen by a specialist after referral, with 38% visiting A&E departments at least once prior to diagnosis.

The 'Crohn's and Colitis Care in the UK' report today by IBD UK- an umbrella body of charities, professional organisations and Royal Colleges - also warns that the pandemic has "exacerbated pre-existing issues such as delays in diagnosis, access to investigations and surgery" and that the backlog "will take considerable time to clear".

It adds: "As this is tackled, it will be critical that people with IBD are appropriately prioritised, based on clinical need, and not pushed to the back of the queue.

"The consequences of a failure to do so would be profound for those facing potential life-changing complications."

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Crohn's disease and ulcerative colitis are the most common forms of IBD, affecting an estimated one in 125 people in Scotland. It occurs when the immune system malfunctions and attacks the gut, and the incidence is increasing.

Symptoms include urgent and frequent diarrhoea - often with blood; excruciating abdominal pain; debilitating fatigue; and associated anxiety and depression.

Delays in diagnosis and treatment can lead to serious and potentially deadly complications, such as a perforated bowel or bowel cancer.

Sarah Sleet, CEO at Crohn’s & Colitis UK and chair of IBD UK, said: “Crohn’s and Colitis are serious conditions which aren’t taken seriously.

"They cost the NHS as much as cancer and heart disease for each patient, and can be as devastating, but they lag behind in the recognition and support needed to improve lives."

READ MORE: 'The pain was unbearable - sometimes I couldn't stand up'

The report reveals one of the key issues in Scotland is the regional variations in service provision, processes, and staffing levels, with most falling short of the recommendations for IBD nurse specialists, dietitians, and psychologists.

Kirsty Gibson, a mental health nurse from Ayrshire, was diagnosed with colitis aged seven.

She was last hospitalised in 2014, but has been experiencing flare ups since February and is worried that her IBD nurse is retiring - with no replacement lined up.

"I know the amount of work she used to do and how accessible she was. She's been a godsend," said Ms Gibson.

"You could phone her on a Monday and you'd be seen that week.

"It's not like that with the consultant. I've had so many appointments scheduled and cancelled so now I don't know when I'll see him."

Kirsty Gibson

Ms Gibson added that there is enough awareness about the psychological impact of IBD.

“It is exhausting," she said. "I find that every day I need to figure out how to get a ‘balance’ so I can carry out my work duties to the best of my ability, be able to still have some sort of contact with my friends and be able to recharge.

"I struggle mentally with this condition as it takes me a while to bounce back after a flare up."

Nancy Greig, 43, from Ayr, was diagnosed with colitis 13 years ago, aged 30, after experiencing excruciating pain, weight loss, and needing to go to the toilet 25 times a day.

She was put on numerous courses of steroids which caused side effects including insomnia and anxiety.

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"Each time I took a course I seemed to become more resistant to them and the severity of my [colitis] increased," said Ms Greig.

After being put on intravenous-steroids for the third time, Nancy waited 10 days to see a surgeon, who then carried out a partial removal of her colon as an emergency. 

She said she felt her condition had been "badly managed" and complained to the health board that the surgery could have been avoided.

A subsequent abdominal scan, which Ms Greig paid for privately while undergoing IVF, revealed that pelvic adhesions from the colon surgery were tethering her fallopian tubes and she had to have surgery to 'unstick' them.

However, she then developed a pelvic abscess and sepsis, and the first round of IVF was also unsuccessful.

Ms Greig conceived on her second round of IVF and gave birth to her son in 2016, aged 38. 

Nancy Greig with her son, born in 2016

She credits her partner with supporting her throughout her illness, which has made it difficult for her to leave the house and have a normal social life.

She said: "I have struggled with my mental health and fatigue in the past and still do sometimes.

"However, my quality of life is much better now since my surgery and I don’t struggle with pain and diarrhoea.

"Obviously having a stoma influences my daily life I terms of things like what I wear or eat and worrying about leaks or changing my bag but I no longer feel ruled by needing to be near a toilet."

Although IBD UK said Scotland had "led the way" in improving care for patients, more than nine in 10 said they still did not have a personalised care plan, and just over half (54%) felt their care was coordinated with other specialist services.

However, NHS Lothian was praised for its 'rapid access' clinic, established at the Western General in Edinburgh in the mid-2000s to enable its growing number of patients to see specialists more quickly during a flare-up before their condition deteriorated and they required hospital admission.

Patients with IBD can be referred immediately for a same-day appointment with on-call consultant gastroenterologist.

Dr Ian Arnott, IBD Clinical Lead for the Scottish Government said: “This report gives us the evidence we need to further develop and embed this work across all services in Scotland, ensuring everyone in Scotland with IBD receives safe, consistent, high-quality personalised care.”