Recently, Robin Whittaker, one of the members of The IBS Network, told us of a letter he wrote to the Herts Valley Clinical Commissioning Group (CCG). In it, he queried how proposals to reconfigure and relocate the diagnostic and follow up services for certain long term medical conditions within West Hertfordshire region would impact on patients with Inflammatory Bowel Disease (Ulcerative Colitis and Crohn’s Disease) and Irritable Bowel Syndrome. A few days later he received a reply from Dr Nicholas Small; Chair: Your Care, Your Future Programme: Working together for a healthier West Herts, reassuring him that the proposed changes would ‘provide care closer to home and support people to manage long term conditions like IBD in a way that avoids hospital admissions as much as possible’. While this would seem a worthy and undoubtedly an economic solution for IBD, it was his throw away comment about IBS that rang alarm bells – ‘people with IBS don’t receive long term follow-up or investigation.’
Yet, the most recent NICE guidelines for adults with IBS (2008, revised 2012) state that ‘Follow‑up should be agreed between the healthcare professional and the person with IBS, based on the response of the person’s symptoms to interventions. This should form part of the annual patient review. The emergence of any ‘red flag’ symptoms during management and follow‑up should prompt further investigation and/or referral to secondary care.
It would seem that the Herts Valley CCG, in company with many CCGs throughout the country ignores the fact that for many people, IBS is a long term disabling condition that severely impairs their quality of life. Those with severe symptoms of IBS are not reassured by negative investigations and pronouncements that ‘don’t worry, it is just IBS; you will get over it’. Often they don’t. Symptoms of IBS can last for years if not for life. The policy of diagnosis and discharge is often counterproductive as people come back needing more investigation and treatment. It is more efficient to arrange regular follow up so that patients can feel looked after and any changes in their condition can be picked up quickly. People dismissed and lost to follow up may not get access to dietetic and psychological services that may reassure and resolve the conditions. IBS can mimic and conceal life threatening conditions such as cancer and IBD, which may be missed if there is not regular follow up.
The most frequent complaint reported by patients with IBS is ‘my doctor never listens’. ‘They are just not interested. When they have done the tests, they just dismiss me. If I go back I feel I am being a nuisance.’ So many people diagnosed with IBS continue with ill health for many years. This could be rectified if people felt there was somewhere they could go without fear of rejection and stigmatisation.
As the UK’s national charity for IBS, The IBS Network campaigns for better services for the 15% of the UK population and those throughout the world who suffer from this condition. Not all people with IBS can expect to receive individual follow up and investigation by doctors. Increasingly other health care professionals, nurses, dietitians and psychologists are taking on primary responsibility for people with IBS. Charities are also playing an essential role.
The IBS Network’s comprehensive IBS Self Care Programme is published on its website. It contains all the basic information people with IBS need to know with extra resources for those who pay a subscription to become members of The IBS Network. Moreover the charity provides support in the form of a professional email response service and a telephone helpline and a health care forum and is currently conducting training for self help group leaders to create a nationwide network of regional self help groups.
These initiatives require the support of CCGs. So instead of a blank dismissal implying that IBS is not sufficiently serious nor important to warrant follow up, they would do better to join forces with The IBS Network to set up IBS self help groups within local community surgeries and clinics.
As Robin recently commented to me, ‘I do wonder why we get involved but as someone said to me in reply “Because you care”’. That’s true. And I know you care too! So if you have experienced incidences of what seems like ‘institutional neglect’, do let us know. It will provide the ammunition to make representations to the powers that be to change their attitude.