A campaign calling for the NHS to establish a national register of patients suffering from inflammatory bowel disease (IBD) was launched at 11 Downing Street at a reception hosted by Maggie Darling, wife of the chancellor.
Leaders in the fields of politics, the health sector, commerce and the arts, whose lives have been affected by IBD, attended the reception in support of the National Association for Colitis and Crohn's Disease (NACC) campaign.
An estimated 240,000 people in the UK suffer with ulcerative colitis or Crohn's disease – lifelong conditions typified by symptoms of diarrhoea, bleeding, fatigue and impaired growth in childhood.
These IBDs have no known cure, and frequently are first diagnosed in teenagers and young adults.
At the Downing Street reception, NACC Chief Executive Richard Driscoll and leading gastroenterologist Professor Chris Hawkey explained the need for a national register of IBD patients, which they say will help improve the care and long-term research into these conditions.
"We will be emphasising to government policymakers and NHS managers and doctors that colitis and Crohn's disease are serious lifelong and sometimes life-threatening conditions affecting about one in 250 of the population," said Mr Driscoll.
"The provision of an IBD register will significantly improve patient care and research in the long term by providing a definitive resource for auditing patients and their ongoing care."
High-profile figures including TV personality Carrie Grant and Rozlynn Prescott, a BBC political producer and daughter-in-law of the former deputy prime minister John Prescott, spoke at the reception of their experiences and daily struggles with IBD.
Rozylnn Prescott recovered from two life-threatening complications of ulcerative colitis, and was forced to part with her one-week old daughter in order to have surgery.
She said: "The NACC campaign is all about seeking out and knowing, rather than guessing, how many individuals in the country have colitis and Crohn's. From my personal experience, I feel strongly that a patient register is long overdue."
The NACC is counting on the support of healthcare professionals and its members to back the call for the national patient register by logging on to the dedicated website Step Up and Be Counted (below) and voting.
Your comments (terms and conditions apply):
"I totally support this being an ulcerative colitis sufferer" – Phil Butler, Birmingham
"Yes, I wholeheartedly support this campaign. To have such a database would be invaluable for research into these debilitating diseases" – Patricia Courtman, Cheltenham