Associate Feature: Scotland has led the way in UK IBD care, but we urgently need more action

A new report from IBD UK, a coalition of leading health specialists in Inflammatory Bowel Disease (IBD) care and patient charities, reveals a picture of IBD care in Scotland which urgently needed improvement even before the Covid-19 pandemic.  

IBD – the two most common forms of which are Crohn’s and Colitis – causes ulcers and inflammation in the gut and there is no cure. Symptoms include the urgent and frequent need to poo (often with blood), extreme fatigue and severe pain. 

IBD can affect nearly every part of the body, including joints, skin, eyes and mental health, leading to a lifetime of medication and, in many cases, life-altering surgery.  

The Crohn’s and Colitis Care in the UK: The Hidden Cost and a Vision for Change report is the most comprehensive assessment of UK IBD care ever undertaken. Covid-19 has exacerbated issues such as delays in diagnosis, long waits for investigations and surgery, and little access to much-needed multidisciplinary support. 

The impact is significant, with research conducted by NHS Lothian citing a figure of 1 in every 125 people living with IBD in Scotland, significantly more than previously thought. 

Lifetime costs for IBD are comparable to heart disease and cancer. Yet IBD is not as well-known or understood amongst the general public, which can lead to stigma and isolation for those affected.  

Scotland has led progress on IBD care in recent years. Scotland Leading the Way: A National Blueprint for IBD in Scotland was published in 2016 with the support of the Scottish Government. 

In 2017, the Scottish Parliament Cross Party Group (CPG) was formed to raise awareness of IBD amongst parliamentarians, and to oversee the implementation of the Blueprint recommendations. 

But the findings of this recent report show that more action is urgently needed. 

Pauline McNeill MSP, convener of the CPG, said: "The CPG gives IBD a status within the parliamentary system, providing a forum for people across the country to talk about what needs to be done.

"Having laid solid foundations and raised awareness of IBD, there remain pressing questions for the CPG with regards to the quality and equity of services for the 1 in 125 Scots affected by these life-changing conditions." 

The IBD UK report revealed that in Scotland: 

• 25 per cent of respondents waited over a year for their diagnosis 
• 69 per cent reported waiting more than the recommended 4 weeks from referral to a specialist to being seen 
• 38 per cent visited A&E at least once before diagnosis  

Delayed diagnosis results in delayed treatment and support. This can lead to serious complications, emergency care, and surgery, and should not be the norm for people with IBD.

Not only does this have a human health impact, but it is incredibly costly to the NHS as the cost of managing someone with active symptoms – known as a flare – is up to six times higher than when they are in remission. 

Another key issue in Scotland is the variation of service provision across the country, meaning people do not always have access to the full range of specialist care they need.

Most services are falling far short of meeting the IBD Standards recommendations for crucial roles, including IBD nurse specialists, dietitians, and psychologists. Those who did not have access to a team of IBD specialists were more likely to report that they felt unable to cope with their condition over the previous year. 

Once diagnosed, care for people with IBD is focused on medication, rather than the wider impact of the conditions. People are left struggling with severe pain, extreme fatigue, anxiety, and problems outside the gut, with 90 per cent of respondents in Scotland reporting they found it hard cope with having IBD over the previous year.

Left unchecked and unchallenged, we risk losing the potential of too many people with IBD unable to live fulfilling, productive lives.  

Kirsty Gibson, 30, from Ayrshire, is living with Ulcerative Colitis. 

She said: “It is exhausting. I find that every day I need to figure out how to get a ‘balance’ so I can go to work, have some sort of contact with friends and family, and be able to recharge. I struggle mentally with this condition as it takes me a while to bounce back after a flare up." 

With better awareness, and better access to specialists, we can achieve better IBD care in Scotland. The 2016 National Blueprint put Scotland at the forefront of improvements to IBD care, but the report shows that this still needs to be translated into practice across Scotland. 

IBD needs to be a Scottish Government priority, with a long-term strategy. By working together, we can ensure that everyone with IBD in Scotland gets better IBD care.  

Elaine Steven is policy lead (Scotland and Northern Ireland) for Crohns and Colitis UK

Elaine.steven@crohsandcolitis.org.uk

www.crohnsandcolitis.org.uk

This article was sponsored by Crohns and Colitis UK