Crohn’s and Colitis Voices: My first year as Convener of the new CPG on Inflammatory Bowel Disease

Pauline reflects on some of the key themes that have come up in the Cross Party Group's first 12 months.

As we approach the first AGM of the Cross Party Group on Inflammatory Bowel Disease (IBD) taking place on 21st February, I’ve taken a moment to reflect on the purpose and achievements of this new forum, the first of its kind, which is driving implementation of ‘Scotland Leading The Way: A National Blueprint for Inflammatory Bowel Disease’.

Invisible conditions 

Crohn’s Disease and ulcerative colitis are invisible conditions causing inflammation and ulceration of the bowel with symptoms including pain, bleeding, and diarrhoea and often accompanied by fatigue, joint and skin problems, anxiety and depression. They are lifelong and incurable conditions affecting all age groups, but often emerging in the teens and twenties. People experience unpredictable flare-ups and periods of remission and the diseases can have a devastating effect on people’s quality of life their work, education family and social life.

High prevalence

Through the experience of a family member I am aware of the severe difficulties people with IBD face. Scotland has some of the highest instances of IBD in the world with as many as 26,000 people diagnosed and the figure is increasing, especially amongst young people.

I had hoped initially that the new group would help to get to the bottom of these figures. I now understand that though this is a complex question which Scotland’s world-class researchers are bringing us closer to answering, there are equally pressing questions to be answered with regards to the quality and equity of services for the 1 in 200 Scots affected by these life-changing conditions.

With such high prevalence, I am very pleased that the Cross Party Group is raising awareness and elevating the profile of these conditions. It is also illustrating how technology and innovation can help drive improvements in services that are cost-effective and contribute to the preventative spend agenda- for example, by hearing about  transformational work in NHS Highland and submitting evidence to the Health and Sport Committee about the role of technology in IBD services.

Knowledge and insight

I have been particularly impressed by the adults and young people living with Crohn’s and colitis who have spoken so eloquently and bravely at meetings about how these conditions have touched every aspect of their lives. What is really striking for me is their rich knowledge of what does and doesn’t work in health services and the potential to use this knowledge and insight in developing new models for the future. Their courage in speaking out in the Scottish Parliament is ensuring that the group are well informed.

During 2017 the group has discussed service redesign, dialogue with Health Board Chief Executives, data and technology and children and young people’s services. Among other topics, the work plan for the coming year will cover self management, psychological support, specialist nursing and access to services.

Keeping IBD on the agenda

There is still a long way to go to ensure that the aims of the Blueprint – to improve services for people affected by Crohn’s Disease and ulcerative colitis across Scotland – are fully met, but I am proud to say that I am chairing an absolutely vital group, supported by Crohn’s and Colitis UK and with enthusiastic input from across the political spectrum, the clinical community and of course from people living with these lifelong, chronic and often stigmatising conditions. I will make sure in this Parliament that IBD issues are high on the health agenda.

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