Health Minister Simon Hamilton breaks his silence on his battle with Crohn's disease
Health Minister Simon Hamilton speaks about the debilitating bowel condition he's been battling for the past 13 years
Like the majority of us, Stormont Health Minister Simon Hamilton is an NHS patient. His counterpart in the Republic, Leo Varadkar (36) is more than likely to have good private health insurance. In the absence, south of the border, of a state funded service for all, the Fine Gael TD has no choice if he wants proper care.
Had the DUP's Mr Hamilton (38) been born in the Republic, he would have faced bills running into thousands for the surgeries and treatments he has undergone in the last 13 years. The red-headed accountant suffers from Crohn's disease, a chronic condition that can cause ulceration and inflammation in the digestive system.
Classed along with colitis as an inflammatory bowel disease (IBD), Crohn's symptoms include severe pain, diarrhoea (often with blood), extreme fatigue, and dramatic weight loss. Untreated, it can lead to a potentially fatal rupture of the bowel.
"If it weren't for the consultant and nurses at the Royal, I wouldn't be able to do my job today," says Mr Hamilton. "People look at us in Stormont and say we don't understand the issues facing them but I have this experience and many of my colleagues are dealing with serious health issues. The NHS does a wonderful job, which I value highly."
Mr Hamilton is speaking from his home in Comber, where he and his wife Nicki, a fellow accountant, have been hosting a weekend party for 20 youngsters, in celebration of their son Kyle's seventh birthday. Their elder son, Lewis, is nine.
Many of the treats on the table would have been off the menu for his dad, who discovered he had Crohn's disease at 25, a common age for IBD diagnoses. The politics and law graduate had been working in Price Waterhouse Coopers, while studying accountancy, for nine months when he started to get symptoms.
"It was April or May; it felt like a bad cold or the flu but it didn't go away," he recalls. "I went to my GP and he gave me antibiotics, thinking it was viral, but it got progressively worse over the summer. I lost my appetite, which isn't me at all - I'd always eat everything in front of me. I went down from 13 and a half stone; I didn't notice but friends I hadn't seen for a while did, and by September, it got too much.
"The symptoms weren't particularly nice. I was tired all the time and could sleep all day, and I had to go to the loo more often. I got mouth ulcers but put it down to being run down and tired. I was working and studying intensely.
"My body was telling me something was wrong but I hadn't heard of Crohn's or colitis before and I was a typical man, trying to fight through it."
What finally prompted Mr Hamilton to seek treatment was some severe joint pain, in his ankles, knees, hips, and elbows.
"I used to drive to Belfast and park a mile away from work in the city centre, and walk the rest of the way," he says. "The walk started to take ages and got tougher and tougher. In the end I thought, 'I can't do this any more', and went back to the doctor, one Tuesday.
"I was in the Royal by Friday, having tests and scans, and was diagnosed the following Thursday."
The minister admits he found the diagnosis "frightening" in the beginning, given the general lack of awareness of IBD, as compared to other chronic incurable diseases, back in 2002.
"I didn't know what I was facing - the not knowing was scary. I did some research and spoke to some people who had been through surgery to have parts of their bowel removed, and had been through hell. It was daunting and worrying — I didn’t know how it would affect my life.”
Prescribed heavy medication including steroids, Mr Hamilton took two months off work to recover and build himself up. IBD is notoriously hard to stabilise and he suffered painful flare-ups, on and off, and had to adjust his diet.
“I’d been incredibly active at work and was involved in politics informally at the time. I was also studying all day on Saturday for accountancy exams.
“I ended up watching a lot of daytime TV, more than I’d ever want to again.
“I was on steroids for a year, which was difficult. I went from losing weight to eating all round me, and it took a year to come off them. You become reliant on them so stopping is quite challenging.
“As for my diet, I’m lucky that I’ve always been a fairly plain eater but the dietician told me to avoid high fibre foods — such as fruit and vegetables, which seemed strange, but they’re hard for people like me to digest. It was a process of trial and error, to pin point what irritated my system.
“I had to start listening to my body. Cutting out gluten was quite helpful, and spicy foods. I’d have been in trouble if I’d had to cut out ice cream, though.”
After a slow recovery process, Mr Hamilton married Nicki in 2003. Since then, he has undergone some gastroenterological procedures but has survived with his bowel intact.
“I have flare-ups every so often without rhyme or reason, and I’d be hit with tiredness all of a sudden, especially if I’m under pressure or stress, which I occasionally am at work. But I was lucky enough to be diagnosed in the quite early stages. There are others a lot worse than me.”
Although IBD is associated with hereditary factors, Mr Hamilton hasn’t found any in his family circle. “I don’t know of anyone in the family who has had it but, who knows? People don’t like to talk about these things, due to it having to do with the bowel and going to the toilet.
“But it’s very important for people having symptoms to come forward. There’s a greater understanding of the disease now and an alternative to steroids — 69% here now have biologic therapy compared to 42% in the UK.”
The shortage of nurses and consultants specialising in IBD here was highlighted at a recent Crohn’s and Colitis UK reception in Stormont in June.
With £40m now in the health budget, that’s a problem Mr Hamilton is seeking to address, along with the ever increasing waiting lists.
“There used to be only half a nurse specialising; now there are three,” he says. “Patients can pick up the phone to them any time, which means they can avoid A&E or gain admission quicker if they need to. There are more consultant gastroenterologists these days but we do need more, given that IBD affects around 8,600 here. There are also people who have been misdiagnosed or are just living with it.
“I know the frustration and worry caused by waiting lists and I’m keen to see improvements. I rely on the NHS like everyone else and they have done a wonderful job for me from the start.”
The Health Minister is looking forward to a traditional Christmas dinner — even if he can’t have stuffing and gravy.
He adds: “I’m avoiding gluten so I’ll have to find a substitute for those. I do enjoy my food and I’m one of the lucky ones who was diagnosed in the early stages. IBD can be scary but it’s treatable. Your life will change but not necessarily negatively.”
300,000 in UK with condition
- Every 30 minutes, someone in the UK is diagnosed with Crohn’s Disease or Ulcerative Colitis — the two main forms of Inflammatory Bowel Disease (IBD)
- At least 300,000 people in the UK — up to 9,000 of whom live in NI — are diagnosed with IBD, chronic conditions that can cause ulceration and inflammation in the colon (Ulcerative Colitis) or any part of the digestive system (Crohn’s disease)
- Symptoms can include diarrhoea (often with blood), severe pain, extreme fatigue, and dramatic weight loss. At present, there is no cure for Crohn’s and Colitis, but drugs and surgery can give long periods of relief from symptoms
- One in 210 people are living with these unpredictable, life-long and potentially life-threatening conditions
- Crohn’s and Colitis UK is a national charity leading the battle against Crohn’s disease and Ulcerative Colitis. The organisation is fighting to achieve a better quality of life now for the 300,000 people in the UK suffering physically and emotionally due to these and other forms of Inflammatory Bowel Disease. Ultimately, the aim is to find a cure
- “For more than 35 years, we’ve been working with and for patients and their families, the doctors that treat them and the policymakers who can bring about change,” said a spokesperson. “We provide high quality information and personal care, support life-changing research and campaign vigorously for more knowledge, better services and more support for people affected by IBD and our 28,000 members. And we won’t stop fighting until we’ve won.”
- For further information go to www.crohnsandcolitis.org.uk