Inflammatory bowel disease has been increasing since the 1960s, and affects not only those living with IBD, but also the global health system.
That has led 18 organizations in the United Kingdom to team up to face the challenge of Crohn's and ulcerative colitis.
Its new umbrella organization, IBD United Kingdom, includes patients, doctors, nurses, dieticians, researchers and other medical professionals, says its president, David Barker. He is executive director of Crohn's and Colitis UK, the largest organization of people with IBD in Great Britain. With 36,000 members, it is the largest group of its kind in Europe.
The organization offers patients and their families support and information, improves the attention and funds of IBD research.
Bell, 59, who has had ulcerative colitis since he was over 20, is excited to be part of the board of IBD UK because he believes it can make a difference in the lives of patients.
The main objective of the organization is "to ensure that people with IBD receive high-quality care focused on the person where they live in the United Kingdom and get the best possible results from their treatment and care," says his site Web.
One of the five ways you can achieve this goal is to define what good patient-centered care looks like, Barker said in a telephone interview with News of IBD today. Another is to establish and monitor standards of care. Another is to ensure that there are research components and quality improvement in the services and attention of IBD. And the last two are to share the best practices and raise the political profile of IBD.
IBD UK, established in August, is a voluntary effort at this time, without staff or budget. Although it is beginning to find its way, the extensive experience of its member organizations means that it can make an important contribution to the care of EII, Barker said.
These organizations range from the British Society of Gastroenterology and the Royal College of Nursing. to the Clinical Pharmacy Association of the United Kingdom 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 consequence of the collaborations in 2009 and 2013 that they created and then, the British standards of IBD care were updated, said Barker.
"The IBD standards were a very powerful collaboration of surgeons, nurses, gastroenterologists, doctors and patients," he said. "They have served us well, and it is time to see what we must do to ensure that they are relevant to current services and to identify practical ways to help an overburdened and overburdened national health service."
Fluctuations of IBD are complicated Diagnosis, treatment of the disease
An example of collaboration of IBD in the UK that will benefit the intestinal disease community is to improve care by sharing best practices, said Barker "Sometimes there may be excellent services in one part of the country" that other parties are unaware of, he said.
The four countries of the United Kingdom, England, Scotland, Wales and Northern Ireland, have different national health services. And different services may have strengths and weaknesses, Barker said.
IBD UK "hopes to unite IBD care and practices" for the sake 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 telephone 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 in the bathroom during his 20 years worsened at 30 years. But it was not until he was 40 years old that he was able to obtain a definitive diagnosis.
"I do not have many stomach problems like some people," said Bell, a retired financial expert. When the disease flares up, "I bled a lot and I can suffer with extreme fatigue," he said.
He stopped smoking and changed his diet after he was diagnosed, and his condition went into remission for a couple of years. But it keeps coming and going.
"Crohn's disease and colitis are increased in children," said Bell, who believes that one of the reasons is the increased consumption of processed foods that contain additives.
Once confined to the developed world, IBD also increased in developing countries such as 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 to recover. At 51, he decided to retire. Since then, he has been in remission, an indication that stress caused by work contributed to his colitis.
Currently focuses on a healthy lifestyle: eating well, taking vacations, swimming and riding a bicycle. [19659002"Whenthereisasepsiscollateraloftwoseizures"hesaid"Ithasnopainwhenithappens"Somepeoplehavebeendefending"hesaid
IBD UK focuses initially on patient data.
Before retiring, Bell became active in a local Crohn's and Colitis group in the United Kingdom. This led to a position on the national council. Due to your financial experience, one of the responsibilities of your board is to oversee a data project.
At the first meeting of IBD United Kingdom in August, Bell said he was "surprised to see the pbadion of health professionals, teachers: a lot of people" With the same goal, which is to improve attention to the patient. "
One area the organization is focusing on is creating a common format for patient data, which will help with care and research, Bell said.
. treat people, but you must have standards so that everyone can understand the data, "he explained, adding that patients on the council will work with doctors and scientists to develop standards.
Bell said that IBD UK is such a young organization that it has yet to determine what role it could play in the investigation of intestinal diseases.
Meanwhile, Crohn & # 39; s and Colitis UK are increasing their research program by raising more funds and adopting a multiplier approach. They used modest grants as seed money to attract the largest, said Barker.
One of its two research streams is the understanding and treatment of inflammatory bowel diseases. The other is to address the psychological and social needs of patients so they can live better with their disorder.
Biological agents offer promise
Barker said that a promising new direction of treatment are biological agents.
Many medications against intestinal disease suppress the entire immune system. Biological products are antibodies that target particular proteins to block the process that causes intestinal inflammation. They offer relief to patients without the side effects of other drugs.
Biological products available in the United Kingdom include Humira (adalimumab) from AbbVie, Entyvio (vedolizumab) from Takeda Pharmaceutical America and two products Janssen Biotech, Remicade (infliximccab) and Simponi (golimumab "
A quantity of biological products Additional tests are in clinical trials, Barker said.
In the four years he was with Crohn & s and Colitis UK, the organization increased its annual fundraising by 60 percent, which allowed it to double the number of scholarships research that gives £ 800,000 a year, or about $ 1.3 million.
Most of the fundraising is grbadroots: "people jumping out of planes, marathons, cycling, shaving their heads, making cake sales , whatever it is to be, "said Barker, who was a marketing and advertising communications professional in corporations and non-profit organizations before deciding he wanted to do something more meaningful. vo.
Tracked 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 in each one were different, but the reward was the same, he said: Knowing that it was help.
It is likely to continue as he and other members of IBD UK work to improve the lives of those with Crohn's disease and ulcerative colitis.