Hmm…there seem to be some strange goings on at the Gut Trust, the UK charity dedicated to IBS sufferers. The trust, formerly called the IBS Network, has just issued their latest edition of their journal Gut Reaction, and it contains a prominent ‘apology and explanation’.
They say that the Gut Trust is “struggling through a period of upheaval”, list several resignations of staff members, and go on to say that their entire board of trustees has also resigned. What particularly caught my eye was the way they phrased the resignation, saying “the trustees who were in charge at the time of rebranding the IBS Network as the Gut Trust [have] resigned”.
The editorial goes on to say that “rebranding drastically depleted our resources without the expected return in terms of new members and corporate sponsorship, so we had no option but to make difficult decisions to reduce expenditure.”
In other words, changing from the IBS Network to the Gut Trust cost a fortune and didn’t do much good, and now they’re struggling, cutting down on their helpline hours, increasing the price for membership, and even asking members if they wouldn’t mind reading Gut Reaction online rather than in print to reduce costs.
Now, I’m kind of torn on this subject. I was a fan of the old IBS Network for many years – it was an organization set up by fellow IBS sufferers and a huge amount of work had gone into supporting us intestinally-challenged folk.
But I was definitely against the name change and rebranding – my blog post from October 2007 tells you why (basically I thought that the name of an IBS charity should really have the word ‘IBS’ in the title).
And I am afraid to say I feel even more strongly about one aspect of the Gut Trust’s work, and that is the involvement of Dr Nick Read. Dr Read is a gastroenterologist and analytical psychotherapist, and he has a huge influence over the Gut Trust, or at least he has a huge influence over Gut Reaction, which if you are a member of the Gut Trust really amounts to the same thing.
In this latest issue of Gut Reaction Dr Read has no fewer than two full articles and then two further pages of replies to sufferers’ letters. He is presented as the absolute authority on all things IBS, and his views have appeared in Gut Reaction for as long as I can remember.
So what’s my problem with him? Well, have a look at some of the things he says:
In an article about IBS self-help groups and patients’ attitudes: “I used to talk to the group at Sheffield, but was somewhat dismayed and embarrassed when the discussion seemed to turn to how doctors didn’t recognize or care about IBS. It seemed that all the grievances that the members had in their lives were being projected on their overworked GPs.”
GPs are overworked and don’t have the solution to IBS, but they often treat us like trash. Maybe that’s why we moan?
Another quote from the same article: “If you can present your doctor with specific questions about diet, stress, drugs instead of overwhelming him with ‘the pain is dreadful and I just can’t cope anymore’ you are likely to be able to work in a constructive partnership to manage your IBS.”
That may well be true, but when I couldn’t cope with my IBS symptoms I could hardly get up in the morning, let alone research all of the things about IBS that my doctor should know already.
In a reply to a letter from the mother of an eight year-old boy who has many health problems including diarrhea, pain, epilepsy and hayfever: “Do reflect on the emotional connection. I imagine Joshua as a rather sensitive boy. Things upset him, but he would not find it easy to talk about them and deal with them. Any tension would be expressed through his body through the sympathetic nervous system and could bring on the illnesses he suffers from.”
In reply to an IBS sufferer’s letter: “Otherwise unexplained gut symptoms are so frequently related to anxieties and stresses that wrench the gut out of kilter. Do reflect on whether there is any cause for stress or tension that might be keeping things going.”
In reply to another IBS sufferer: “Symptoms of bowel looseness that persist after an attack of gastroenteritis can be associated with persistent anxiety or depression that was around at the time of the original infection.”
In reply to another IBS sufferer who is moving house and quite ill: “Displacement can be quite a major source of stress…such dislocation is often felt in the body.”
In reply to yet another IBS sufferer (this is my favorite quote of all): “Perhaps if you could cease to worry so much, learn to relax, your guts would not be so sensitive.”
Yes, ladies and gentlemen, it’s the good old ‘just calm down and stop being so dreadfully neurotic’ defense! Honestly. Anyway, you probably see my point.
I wouldn’t really mind all of this if the Gut Trust presented opposing points of view – from nutritionists, for example, or other gastro doctors. But on the odd occasion when this happens, Dr Read is often given room to disagree with the article and reiterate his old psychological beliefs.
His influence is so strong that I remember reading Gut Reaction for the first time, many years ago, and being surprised to ‘learn’ that I actually had a mental health/emotional problem rather than a gut problem. It was only when I started researching things myself for my websites that I realized that Dr Read was firmly in the minority with his views, and about 20 years behind many doctors.
I’m lucky enough to receive review copies of most new IBS books that come out, usually written by leading IBS specialists, and I honestly can’t remember a single one that has presented IBS as some kind of physical representation of emotional trauma. And yet that’s exactly what Dr Read does, year after year, in the only IBS journal there is. Nobody else’s ideas get a look in. That’s just not on.
So I’m sorry that the Gut Trust are struggling, and I’m especially sorry that the people who have put so much hard work into it are now finding life difficult financially. But if it means that we hear a little less from Dr Read then I can’t say I’m going to be crushed.