Hansard

I thank all the members who signed my motion and those who are taking part in the debate. I also thank the Parliamentary Bureau for selecting my motion for debate. Everyone who is watching is absolutely delighted that at long last we have a debate on inflammatory bowel disease, Crohn’s and colitis.

A staggering 26,000 people in Scotland, or one in every 210 people, are estimated to be living with inflammatory bowel disease. The term is used to describe two conditions: Crohn’s disease and ulcerative colitis. In short, they cause inflammation of the colon and the gastrointestinal tract. It is a serious disease, for which two thirds of patients need emergency care before they are diagnosed.

Unbelievably, Scotland has the highest prevalence of paediatric onset, and the rate is increasing. IBD is a global disease—its prevalence is increasing around the world—and, unfortunately, it is not curable. Crohn’s and colitis are lifelong conditions and, taken together as IBD, they are often referred to as the invisible disease. Symptoms include stomach cramps, urgently needing the toilet, fatigue and joint pain. The symptoms fluctuate and their onset is rapid; they are constant and chronic. The lifelong costs that are associated with the conditions are akin to other major diseases, such as diabetes and cancer. A paper that has just been published at this month’s European Crohn’s and colitis congress notes that Scotland has the highest incidence among children anywhere in the world.

The causes of IBD are not known. Professor David Wilson, who is a gastroenterologist at the University of Edinburgh, suggests that possible causes are the western diet, factors associated with living at a northern latitude and the industrialisation of food processes. It is a global phenomenon, and it will need more research to get to the bottom of it.

It is incredible that everyone I talk to—even you, Presiding Officer—knows someone with IBD. My niece and goddaughter, Angela, was diagnosed with ulcerative colitis at the age of 15. She complained of sore legs and extreme tiredness and was spending days in bed. It is terrible for anyone at any age to discover that they have the condition, but the age of 15 is a critical time for school and growing up. Like most children with the condition, she spent weeks on end in Glasgow children’s hospital; it became part of everyday life. It is vital that those children know that their schools recognise their particular needs and how disruptive the condition is to their education.

Our family is indebted to the incredible IBD service at the children’s hospital and its staff, including consultant Rachael Taylor and nurses such as Vicky Garrick and Lee Curtis. Some would say that they have been sent from heaven to be in the lives of young people, because they have given them so much strength and support.

I also thank Crohn’s and Colitis UK and Dr Ian Arnott, who is vice convener of our thriving cross-party group. The stories of young people who are overcoming IBD are quite incredible. The number of people who are misdiagnosed is high. Last week, medics in our cross-party group told us of their view that patients, who are constantly tested for diagnosis, should be copied into all out-patient letters about their treatment. That already happens in England, and it seems obvious that we should modernise our system and do that here, too.

Joseph Logan is now 14 years old; he was diagnosed at the age of 11. His mum was worried about him, because he looked pale. She thought that that might have been due to the amount of exercise that he was doing, because he played a lot of tennis at the time. Eventually, he found it difficult to walk short distances and was admitted to the Royal hospital for sick children and diagnosed with Crohn’s disease. He plays tennis now to a very high standard and regularly wins tournaments—that shows that the disease does not hold these young people back.

The cross-party group also heard last week from Roisin, a young woman who challenged the group to think about how their morning had begun. For most of us—certainly for me—it began with coffee. She told us that her day starts with dealing with the condition: cleaning her wounds, taking her medication, making sure that her food is at the right temperature and taking pain killers. It is an extraordinary start to the day, but she gets through it and she is not angry. She speaks for a lot of people.

Many people find IBD difficult to speak about; talking about the bowel can be embarrassing. A young girl talked to the cross-party group about how she experienced bullying because of her colostomy bag.

Jenny Cook, a young IBD fighter, has been an inspiration. She has gone through numerous operations to remove part of her bowel, but she is always smiling and has been raising funds for the Catherine McEwan Foundation.

I say to the health ministers that, to fight the disease, we need a number of things. We need a greater understanding of the disease—that it is lifelong and complex to manage. Many patients just need a bit of extra help to self-manage. Three years on from the publication of “Scotland Leading the Way: A National Blueprint for Inflammatory Bowel Disease in Scotland”, we are still asking health boards to recognise Crohn’s and colitis as priority conditions. I hope that that happens soon.

Scotland lags behind the rest of the United Kingdom in having a sufficient number of IBD specialist nurses. There should be one nurse to every 500 patients, but more than 33 per cent of sufferers have no contact at all with an IBD nurse. We need a service redesign led by senior clinical nurse specialists. Some hospitals have no identified IBD clinicians at all. Although the service is developing well for children, there is no identified service for adults. Access to toilets is crucial for anyone with the condition, and more must be done to recognise the whole range of conditions for which getting to a toilet is absolutely essential.

The best design would include age-appropriate services for 16 to 24-year-olds, including continuing psychological support. After the age of 16, that support drops off. At the age of 18, young people transition to the adult service. It is very hard for young adults who have been used to the children’s service to transition. In fact, most teenagers I have spoken to find it quite a shock, because the adult service is quite different.

Although the national blueprint is a good framework for better services, there is no mandate for its implementation. In June 2019, the refreshed UK-wide IBD standards will be launched. We are calling on all health boards to have a defined adult service for IBD. We make a plea to health board chief executives. We have been asking for two years for one of them to come to our group so that we can get the message across. I hope that they are listening. Similarly, I know that the health ministers are busy, but we have not had a visit in two years, and we would really like one.

Self-management is a key part of the blueprint. Crohn’s and Colitis UK has a prototype for a flare card, with basic advice for a flare-up of key symptoms.

There should be better use of technology, especially in remote areas. Dr Thomson, from Grampian NHS Board explained the open review process, where people come back into the clinic when they need an appointment by phoning the IBD helpline or the gastro reception. He noted that the majority of people with chronic disease know their disease well, and they know when they need to talk to someone. The IBD waiting list in Grampian has halved since the remote service came in. The same is true in Highland. Professor Angus Watson noted that the average travel distance saved per patient using the attend anywhere system was 120 miles.

We need an IBD service that is fit for the 21st century. We need research to be funded so that we can find out what is causing this debilitating disease, which is on the rise, and we need the Scottish Government to work with us to redesign the service for the better.