Inflammatory bowel disease has been increasing since the 1960s, burdening not only those who live with IBD but the global healthcare system as well.
That has led 18 organizations in the United Kingdom to team up in order to meet the challenge of Crohn’s and ulcerative colitis.
Their new umbrella organization, IBD UK, includes patients, doctors, nurses, dietitians, researchers and other medical professionals, says its chairman, David Barker. He is chief executive of Crohn’s and Colitis UK, Britain’s largest organization for people with IBD — and with 36,000 members the largest group of its kind in Europe.
The organization offers patients and their families support and information, improves IBD care and funds research.
Bell, 59, who has had ulcerative colitis since his late 20s, is enthusiastic about being on the IBD UK board because he believes it can make a difference in patients’ lives.
The organization’s main goal is “to ensure that people with IBD receive consistently high-quality, person-centered care wherever they live in the UK and have the best possible outcomes from their treatment and care,” its website notes.
One of the five ways it can achieve this goal is to define what good patient-centered care looks like, Barker said in a phone interview with IBD News Today. Another is to establish and monitor care standards. Still another is to ensure there are research and quality improvement components in IBD services and care. And the last two are to share best practices and raise IBD’s political profile.
IBD UK, established in August, is a volunteer effort at the moment, with no staff or budget. Although it is just starting to find its way, its member organizations’ wide-ranging expertise mean it can make an important contribution to IBD care, Barker said.
These organizations range from the British Society of Gastroenterology and the Royal College of Nursing to the UK Clinical Pharmacy Association and Children with Crohn’s and Colitis.
Two patients sit on the board: Bell and Melissa Fletcher, who has Crohn’s.
IBD UK is a natural outgrowth of collaborations in 2009 and 2013 that created and then updated Britain’s IBD Standards of care, Barker said.
“The IBD Standards were a very powerful collaboration of the surgeons, the nurses, the gastroenterologists, the doctors, the patients,” he said. “They have served us well, and the time is now right to look at what we need to do to ensure they are relevant to today’s services and identify practical ways to help an overstretched and overburdened national health service.”
IBD Fluctuations Complicate Diagnosis, Treatment of Disease
An example of an IBD UK collaboration that will benefit the bowel disease community is improving care through sharing best practices, Barker said. “Sometimes there can be excellent services in one part of the country” that other parts are unaware of, he said.
The United Kingdom’s four countries — England, Scotland, Wales and Northern Ireland — have different national healthcare services. And different services can have strengths and weaknesses, Barker said.
IBD UK “hopes to bring together IBD care and practices” for the good of all British patients, he said.
One of the challenges of an inflammatory bowel disease is that it fluctuates, Bell told IBD News Today in a phone interview. Another is that its severity can differ dramatically from patient to patient. That can make diagnosis and treatment difficult, he said.
The bleeding he experienced off and on in the toilet during his 20s grew worse in his 30s. But it wasn’t until his early 40s that he could obtain a definitive diagnosis.
“I don’t have a lot of stomach problems like some people,” said Bell, a retired financial expert. When the disease flares up, “I just bleed an awful lot and can suffer with extreme fatigue,” he said.
He stopped smoking and changed his diet after being diagnosed, and his condition went into remission for a couple of years. But it continues to come and go.
“Crohn’s and colitis are increasing in children,” said Bell, who believes one reason is increased consumption of processed food containing additives.
Once confined to the developed world, IBD is also increasing in developing countries like China and India.
After his diagnosis, Bell continued to be so exhausted from work that at the end of each year he took a couple of weeks off just to recoup. At 51, he decided to retire. He’s been in remission more often than not since then — an indication that work-driven stress contributed to his colitis, he said.
These days he focuses on a healthy lifestyle: eating well, taking vacations, swimming and cycling.
When he has a colitis flare-up, it takes two to three months to dissipate, he said. But he has little pain when it happens. “Some people get tremendous pain,” he said.
IBD UK Initially Focuses on Patient Data
Before he retired, Bell became active in a local Crohn’s and Colitis UK group. This led to a position on the national board. Because of his financial background, one of his board responsibilities is overseeing a data project.
At IBD UK’s first meeting in August, Bell said, he was “amazed to see the passion from healthcare professionals, professors — a whole lot of people — with the same goal, which is improving patient care.”
One area the organization is focusing on is creating a common format for patient data, which will help with care and research, Bell said.
“Data is powerful. You can see patterns emerging, how people are treated — but you have to have standards so everyone can make sense of the data,” he explained, adding that the patients on the board will work with doctors and scientists to develop standards.
Bell said IBD UK is such a young organization that it has yet to determine what role it might play in bowel disease research.
Meanwhile, Crohn’s and Colitis UK is ramping up its research program by raising more funds and adopting a multiplier approach — using modest grants as seed money to attract larger ones, Barker said.
One of its two research streams is understanding and treating inflammatory bowel diseases. The other is addressing patients’ psychological and social needs so they can live better with their disorder.
Biologic Agents Offer Promise
Barker said a promising new treatment direction is biologic agents.
Many bowel disease drugs suppress patients’ entire immune systems. Biologics are antibodies that target particular proteins to block the process that causes gut inflammation. They offer patients relief without the side effects of other drugs.
Biologics available In the United Kingdom include AbbVie’s Humira (adalimumab), Takeda Pharmaceutical America’s Entyvio (vedolizumab), and two Janssen Biotech products, Remicade (infliximccab) and Simponi (golimumab).
A number of additional biologics are in clinical trials, Barker said.
In the four years he has been with Crohn’s and Colitis UK, the organization has increased its annual fundraising by 60 percent — allowing it to double the amount of research grants it awards to £800,000 a year, or about $1.3 million.
Most of the fundraising is grassroots — “people jumping out of airplanes, running marathons, cycling, shaving their heads, doing bake sales, whatever it might be,” said Barker, who was a marketing and advertising communications professional at corporations and nonprofit organizations before deciding he wanted to do something more meaningful.
He worked at the British Heart Foundation, Breakthrough Breast Cancer and the Royal National Institute for Deaf People before joining Crohn’s and Colitis UK.
The challenges he encountered at each were different, but the reward was the same, he said: Knowing he was helping.
That’s likely to continue as he and other members of IBD UK work to improve the lives of those with Crohn’s and ulcerative colitis.