Hansard

I thank Pauline McNeill for securing the debate and for the stewardship and leadership that she has shown on the cross-party group on inflammatory bowel disease.

I make a special mention of Nancy Greig from Crohn’s and Colitis UK, who is watching the debate from the public gallery. She is simply a tour de force, not only in her role on the secretariat for the group but in everything that she does to raise awareness of Crohn’s and colitis, which included holding an exhibition outside the chamber a few weeks ago.

I pay tribute, as Ms McNeill did, to the many people who have presented to the cross-party group about their experience of their condition and its management, not least Roisin Robertson just last week. We are acutely grateful to them—especially to the younger CPG members, who have shown such bravery and honesty in order to inform our understanding.

The motion is about prevalence, and prevalence of inflammatory bowel disease in Scotland and across the world is increasing. The word that always comes to mind when I think of the disease is “invisible”—Pauline McNeill mentioned the “invisible disease”, and we keep hearing that term. How can it be that something that is so painful, that can be so debilitating and restricting and that is increasingly prevalent is invisible to us? That should simply not be so. However, that is the message that we are getting; members of the Scottish Parliament cross-party group keep using the term. They say that the disease is widely misunderstood and misrepresented.

Crohn’s and colitis, the two main forms of inflammatory bowel disease, affect 26,000 people in Scotland, and the number is rising. It is a lifelong disease. People experience IBD in different ways, but the stigmatising effect on those who have to live with and manage it remains consistent.

As we have heard, the disease affects not just the bowel and the gut but many parts of the body. As Ms McNeill said, it can lead to diabetes, anaemia and other conditions that we would associate with the body’s inability to absorb the nutrients that most of us take for granted. It leads to a lifetime of medication, coupled with an array of incapacitating symptoms that can have a severe impact on a person’s long-term mental health. However, three years on from the publication of “Scotland Leading the Way: A National Blueprint for Inflammatory Bowel Disease in Scotland”, health boards are yet to recognise Crohn’s and colitis as priority conditions.

The disease might seem invisible. We cannot see that a person has it—we cannot recognise that from looking at them. However, that often means that we cannot recognise the effect that it can have on their quality of life and the impact that it can have on their family. It is therefore no wonder that people with the condition continue to feel invisible.

A lot of good work is being done to raise awareness of IBD. As deputy convener of the CPG, I have been heartened to hear the stories of those who have found a support network in the group—a group that they never knew existed—among people with the condition and their families. The relentless work of the group’s members is making the condition visible. It is visible in the Parliament this evening, and we must continue to make it visible.

We must work harder, as there is much to be done. We need to improve specialist nurse provision, ideally to the recommended ratio of one nurse per 500 patients. We need to improve the psychological and emotional support that is offered to those with the condition, particularly younger children and teenagers, who—we have heard—are being diagnosed more frequently.

We need to make the condition visible and make sure that people better understand Crohn’s and colitis.