Hansard

I thank Pauline McNeill for securing the debate, and for the attention that she continues to pay to the issue and her work with the CPG on inflammatory bowel disease.

I wanted to speak in the debate after meeting a constituent who has ulcerative colitis and hearing about the difficulties that she is experiencing, particularly with her employer. She came to see me because of those problems. It is my understanding that her employment problems are, unfortunately, all too common for people with IBD. That needs to change.

When my constituent’s disease is active, it leads to intense fatigue; I am sure that we are all aware that it is a symptom. She says that her employer has been somewhat accommodating as far as the more obvious symptoms of her IBD are concerned, although she confessed that she has been made to feel that she is somehow to blame for her disease—that her symptoms are a result of something that she ate, as opposed to the disease that she has. She has also been required to provide evidence to justify the accommodations, which she has found to be embarrassing and, frankly, unacceptable. However, her employer is unwilling to look beyond the obvious symptoms and to acknowledge other aspects of her disease, such as the intense fatigue that she suffers. Given that fatigue is a hidden part of the disease, it is something that her employer finds difficult to understand or to accommodate.

My constituent suggested, to her employer, flexible arrangements at work, but all her suggestions have been refused. She needs to work and wants to work: her work contributes not only financially, but to her sense of self. However, her employer has refused to help her to establish a work schedule that would enable her to work effectively while managing her condition. Rather than have a reduced or flexible workload, she has had to be signed off by her doctor and is now on sick leave. That serves only to increase her stress level, which in her case simply exacerbate the disease. I am sure that that story sounds familiar to many members.

Thanks to Crohn’s and Colitis UK, and in particular, the representatives from Crohn’s and Colitis Ayrshire and Arran whom I met last month here in Holyrood, we have learned that IBD can be considered to be a disability under the Equality Act 2010, and therefore employees with the condition are entitled to protection from discrimination, and employers are required to make reasonable adjustments to accommodate the demands of the disease. I am frustrated, on behalf of my constituent, that her employer has refused to do so. If she wants to continue working, she now has to speak about her disease to external organisations to gain their support, and she is not particularly comfortable about sharing information about it.

It is that sort of experience that drove the Scottish Government’s national blueprint, which is changing how NHS boards treat IBD. There is good practice in NHS Ayrshire and Arran that I can share with colleagues, but I do not have time to go into it. When I spoke to the patients’ rights champion, Kirsty Gibson, regarding the Ayrshire experience, she said that there have definitely been improvements following the blueprint, including having gastroenterology specialists, more IBD nurses, an IBD helpline and patients being seen at clinics.

However, my constituent still thinks that more can be done, including ensuring that people can access the right services at the right time, and at a time of their choosing; having more IBD nurse specialists, who are always needed and always welcome; having more after-hours clinics; ensuring more uptake of mental health support, particularly for family members; and using technology so that patients can consult nurses from home, which I understand was done in the Highlands pilot.

Of course, we need to challenge public discrimination. Crohn’s and Colitis UK’s “Can’t wait” cards are dismissed by most shops and stores. I hope that debates such as this will help to raise public awareness. As I mentioned, the possible discrimination by employers needs to be addressed. My constituent agreed that her interactions with her doctor, nurses and health staff have all been excellent, but more can always be done, particularly to encourage a more acceptable approach from her employers. There is no doubt that people are struggling enough with the concept of having a chronic illness so early in their lives, without having those additional worries to concern them.

Once again, I thank Pauline McNeill for bringing the subject to the attention of Parliament.