UPDATE: 08/03/2014 The most recent version of this post can be found at August 3, 2014.
This week is National Gut Week in the U.K. and neighboring Ireland, and a good time to alert readers in those countries to some of the available resources for irritable bowel syndrome and other gastrointestinal conditions in that region of the world.
The official site for Gut Week, sponsored by various charities, organizations and companies, provides some general information on the website and links to other gastrointestinal resources It also offers information packets, including some articles from leading professionals in the U.K. and Ireland, available in hard copy by request or by download to people who provide contact information from within the U.K. or Ireland. There are also contests on the site in which to participate during this week.
The IBS Network, formerly The Gut Trust, in Sheffield is the national charity for irritable bowel syndrome in the U.K. For a modest annual fee, members get access to a telephone helpline, support groups, a magazine and other written information, news about advocacy and research, an online self-care tool, and a “Can’t Wait” card meant to assist people with IBS in quickly communicating to others the need for access to a public toilet. The IBS Network has also just launched a new online community that it is encouraging people to try out.
As noted previously on this blog, some people with IBS in the U.K. have found RADAR keys, meant to unlock disability-accessible public toilets, useful. They are so named for the Royal Association for Disability Rights, which has now merged with other organizations to form Disability U.K., located in London. In addition to selling RADAR keys and guides and smartphone apps of locations where they can be used, Disability U.K. provides a wide range of information and resources for people with all types of disabilities and medical conditions, including general advice on legal protections, benefits and other disability advocacy within the U.K. Many of these apply to IBS.
It is IBS Impact’s understanding that experiences with people with IBS receiving disability benefits within the U.K. or Ireland vary greatly. Some people are able to successfully obtain them, but others not. The following government websites have useful information on benefits and other disability-related topics: Directgov disability information in the U.K. and Citizens Information Board disability information in Ireland.
For evidence-based guidelines on treatment of IBS, see the British Society of Gastroenterology (2007), the National Institute for Health and Clinical Excellence (2008) and the British Dietetic Association (2012). The South Manchester Functional Bowel Service, headed by Peter Whorwell, MD also has a website of information on IBS, gut-directed hypnotherapy, on which Dr. Whorwell is an international authority and pioneer, and the research studies and clinical care offered at his service.
Michael Mahoney, clinical hypnotherapist in Cheshire, has different, home-based CD/MP3 hypnotherapy protocols from Dr. Whorwell’s, which many adults and children with IBS or functional abdominal pain (also known as recurrent abdominal pain) in various countries have found helpful, as well as an audio CD designed to explain IBS to family and friends. An article by Mike can be found on the family and friends page of the IBS Impact main site. A link to details on his IBS Audio 100 program for adults can be found on the links page, and a link to details on the IBS Audio 60 program for children on the children’s page.
Also on IBS Impact’s family and friends page is an an article by Sophie Lee, an adult with IBS in the U.K. who has had IBS since childhood. Sophie offered this excerpt from her published memoir to IBS Impact in the hope of increasing awareness of IBS. Some readers may be aware that she also owns IBS Tales, a website for people with IBS to share their successes and disappointments. It draws readers internationally, but as a site originating in the U.K., has more of a U.K. focus. Please be aware that because the site is composed of personal experiences with conventional, complementary and self-help treatment approaches contributed by many people, certain information may or may not be scientifically accurate, and in any case, individual experiences will vary. IBS Impact strongly encourages positive peer support and sharing of reputable information and personal experiences by people with IBS, but does not focus on treatment advice. We urge readers to also consult the evidence-based resources given in this post and the individual advice of their own health care providers so that they can make the fully informed choices best for their own situations.
Julie Thompson, a registered dietician who works in the National Health Service and an IBS Network trustee, has a blog, Clinical Alimentary, that addresses digestive health and nutrition and the scientific evidence behind various topics of interest. Finally, readers may be interested in this December 24, 2011 post by IBS Impact on fascinating research supported by the Wellcome Trust on the history of IBS in the U.K.
This post is not intended to be an exhaustive list of every resource available in the United Kingdom or Ireland for IBS, but a thoughtful starting point. Readers are encouraged to comment on this post or through the contact links on the IBS Impact main website if there are suggestions of topics or resources or advocacy concerns that might be addressed in the future.