Raising Crohn’s and Colitis on the political agenda in Scotland

How did you become convenor of the Cross-Party Group (CPG)?

My niece has Ulcerative Colitis. Crohn’s & Colitis UK approached me about establishing the Cross-Party Group in Scotland, and told me they’d provide the secretariat for it. I’m glad they did, because it provides a brilliant forum for the charity and for raising awareness of Crohn’s and Colitis.

How can a Cross-Party Group like this make a difference?

Firstly, it gives a particular issue a status within the parliamentary system because the CPG has to be registered by the Standards Committee and is regulated. Secondly, it provides a forum for people all over the country to come and talk about what needs to be done. And, since Crohn’s & Colitis UK are the leading charity for these conditions, it's a really brilliant way for them to tell people what they're doing. Without it, the MSPs who come along would have no knowledge of what Crohn’s & Colitis UK does.

It is one of the most amazing charities that I've worked with. The role it plays is so significant in the development of health services, and the information it provides is absolutely invaluable. I just can't imagine what it would be like without a charity like this.

Who attends the Cross-Party Group?

They’re generally well attended, so we have around 35 people. We always get a fair spread of MSPs. Some amazing people participate; we have clinicians and people from the health service who talk about their work and their research. We have quite a lot of medical presentations, so we’ve seen images of a gut close up. It’s definitely educated me.

There’s always a person with Crohn’s or Colitis who comes to tell their story at the meeting. We had one young boy who was 11 or 12 and came along with his dad. The father was so proud of his son when he spoke to the group and I gave him a tour of the chamber afterwards. I think the Scottish Parliament lives up to the reputation it seeks, which is to be accessible to people.

What have you been able to achieve through the group?

When Crohn’s & Colitis UK launched the patient flare card in Scotland, the group was able to highlight that, and I directly handed a card to the cabinet secretary. We also met with a junior minister who agreed to write to all schools, so they have an understanding of what young people with Crohn’s and Colitis go through because, at the moment, schools are not recognising what young people need.

Can anyone come along to the group?

All you have to do is write to me as the convener, or you can even do it through an email to Crohn’s & Colitis UK. My office registers that person and puts together a list of attendees. Then on the day, for security, we bring you in and make sure you leave the meeting afterwards. Like everyone else, we're running a virtual group at the moment, but maybe when we return from lockdown we’ll be able to do a mixture of physical meetings with the opportunity to participate virtually for people from further away.

How else has the pandemic changed things?

It took us a while to get up and running with virtual meetings, but we are managing to talk through the same number of issues as before. There are so many other priorities in Parliament at the moment, but we are keeping up our lobbying of ministers and the health service in terms of the developments we want to see: earlier diagnosis, better understanding, and the introduction of adolescent services. When you turn 18, you move up into adult health services and we’ve been arguing that there needs to be an intermediate adolescent stage. We’ve been listened to, but haven’t been successful on that yet.

What are your priorities for the group in the future?

It seems that Scotland's got a higher incidence of IBD than elsewhere and we don’t really know why. I'd like to see more research into that. I’d also like to push further on the need for an adolescent service, so that the jump from child to adult NHS care is not quite so acute. I think there should be more emphasis on mental health services and there’s got to be more work done in schools. There’s a lack of understanding in schools about what Crohn’s and Colitis are like, because when someone looks well others don’t realise how tired they can be, for example. There’s a lot more work to be done.