IBS and the NHS: the patients’ stories
Updated: May 5
It’s not easy to seek help when you have a bowel issue. Talking about poop, wind, and bloating can be nerve-wracking and embarrassing. And what happens when you finally have that courage to seek help? Do you finally get the help you need to manage IBS? Unfortunately, for a lot of people, the answer is no.
Even getting an irritable bowel syndrome diagnosis is hard enough. What should be an easy way of getting the help you desperately need can often be the start of a very difficult journey. This can lead to a lot of confusion and mental strain. 1 in 7 of us in the UK and in this world has irritable bowel syndrome so this can affect thousands of people. In fact, the difficulties of finding treatment through the NHS may be familiar to you! But it shouldn’t be this way. IBS is far more than simply irritating; it can affect every aspect of your life and every person deserves to get help.
More importantly, people need to know they are not suffering alone. When we know we are in it together, we can solve it together! We took the time to listen to and hear the experiences of patients trying to find help for their IBS from the NHS. And though the stories are real, the patient’s names have been changed to preserve their privacy. We are here to start the conversation and bring about the change!
Julie and her irritable bowel syndrome diagnosis: “It’s all in your head”
This mentality is extremely damaging. When you are suffering and people do not take you seriously, this can affect your mental health and leave you feeling powerless. IBS is not in anyone’s head, it’s in their body and it can affect the whole body, in fact. While it can be reassuring that irritable bowel syndrome is not a life-threatening illness that does not mean that it doesn’t affect people’s lives massively. People still need help and advice on how to manage their IBS and what IBS treatment methods they should try.
There is a very real connection between the gut and the brain. This means that feeling stressed because you do not receive the help you need can cause you to have a flare-up in IBS symptoms, so this demonising approach can actually make IBS worse.
It is really important to tackle the myths around IBS because they can be so damaging. Luckily, you can download our free guide: It’s not all in your head: IBS myths debunked to find out more about why these myths about IBS are so wrong and what to do about it.
Thomas’ IBS symptoms: “It’s simple - learn to stress less”
Thomas was told that his condition was likely to worsen with stressful triggers and that he should stress less. He was not given any information or support on how he could do this. But unfortunately, we all know that “simply stressing less” is easier said than done. Stress is an inevitable part of life and avoiding stress can lead to behaviours that may actually make IBS worse. Although the NHS guidelines highlight the importance of trying psychological therapies like gut-directed hypnotherapy and CBT for IBS, this was not offered to him.
Thomas is definitely not alone, one study into GP attitudes to IBS showed that although there is a lot of evidence that psychological therapies like CBT can help with IBS, many GPs are reluctant to refer patients to these services. This was largely because there were long waiting lists for psychological services and GPs felt that patients with depression should be prioritised instead. Some GPs also did not understand the role of mental health in IBS and how the gut-brain axis works in causing some of the symptoms experienced by patients.
“It’s just IBS - there is no cure and you have to put up with it”
Roberta went to the GP hoping for answers, but once her test results came back negative, she felt the attitude she received was simply to put up with the symptoms since it was not a serious illness. The doctor did not take her symptoms seriously and the advice was to simply get on with it. This left her feeling lost and like her illness did not matter.
While there is no “cure” for IBS, there are many evidence-based treatments that have been proven to help patients take control of symptoms and lead a life where symptoms do not bother them or even symptom-free. Leaving people to simply put up with the symptoms is unacceptable when such treatments exist. NHS guidelines advocate for CBT and hypnotherapy as approaches to tackle IBS but unfortunately, many doctors are unaware of such psychological therapy or reluctant to refer their patients.
Amanda’s mixed IBS treatment: “I found a treatment 3 years and $800,000 later”
Amanda was initially struck with symptoms while she was in the USA and wrongly diagnosed with an eating disorder. She spent 3 years trying to get treatment and spent $800,000. Although she feels the US system is a luxury for those who are able to afford insurance, NHS services proved to be a great help. Through the NHS she was able to get the correct diagnosis. Doctors within the NHS were more familiar with IBS and were more accepting. They were able to give her a personalised approach with a combination of IBS medication, diet changes, and digestive enzymes. This really helped her and now she has her symptoms under control.
Amanda’s case highlights how expensive trying to find a solution for IBS can be. Since doctors often find IBS difficult to diagnose, patients can often find themselves seeking alternative solutions. For some patients, they may seek private healthcare solutions or even alternative medicine practices. Some of these treatments are not evidence-based and can cause people to lose a lot of money without any benefit.
Getting the IBS treatment you deserve
Although currently there can be some disappointment when seeking help through the NHS for IBS, change is coming. And at Zemedy, we are going to be part of that change, creating an accessible way for patients to receive the best treatment possible bypassing the waiting lists. We are here to provide an easy way to meet NHS guidelines without the faff.