Today the BBC reports on a survey that states that some Coeliac sufferers have had to wait 13 years for diagnosis.
Well my experience with diagnosis is even worse than that. Now I don't suffer from the condition myself, but I know someone who does. This person first sought medical help 19 years ago. During this time, the condition has be mis-diagnosed as IBS, complications arising from ME and a food allergy. All treatment failed to alleviate the pain and suffering of this condition.
Around 18 months ago, this person fell into conversation with a Coeliac sufferer quite by accident. After hearing the symptoms this sufferer had and comparing them with their own, this person self diagnosed themselves as having the disease. Immediately they put themselves on a gluten free diet and almost at once they felt better. Over the next 18 months the damage was reversed until now they are practically symptom free.
Now you may think the story ends there, but no, the medical profession had not finished messing up this person just yet. You see gluten free food is expensive and as well as that, the condition brings other risks such as osteoporosis and bowel cancer. Because of this, it is important to get a confirmed diagnosis and have your local NHS Trust be aware of your condition to enable them to monitor you for those associated risks.
So this person makes an appointment to see their GP and explains to him their symptoms, how long they have had them, the conversation with the Coeliac sufferer and how much better they are feeling now that they have been on the gluten free diet for 18 months. The GP agrees that this person most likely has Coeliac and gives them a prescription for gluten free food.
All seems well, however, the local NHS Trust is not happy. Oh no! You see it turns out that you can't do it that way. You cannot form an hypothesis about a condition, experiment to check your hypothesis and then, when the experiment proves your hypothesis, treat the hypothesized condition. Oh no, you have to have the actual test. So the NHS Trust wrote to this person's GP and instructed him to stop all prescriptions immediately until they had taken the test and it had returned a positive result.
Now that seems pretty straightforward doesn't it, take a simple test, get a positive diagnosis and then get monitored for nasty things that go along with Coeliac disease? Only it's not that simple. Nope, you see the test the NHS Trust are talking about is a biopsy. You see if you suffer from Coeliac disease then gluten causes the body to attack the small bowel and this damage causes the symptoms. The test is to take a biopsy and examine it for this damage.
However, since this person has been on a gluten free diet for 18 months (and has been practically symptom free) the the body will have repaired the damage and there will be nothing to see! Therefore the fact that a gluten free diet has made a huge difference to this person's life, is the best way (for this person) to be diagnosed.
The NHS Trust's response? Totally unacceptable. Under no circumstances can a diagnosis be made this way (treating Coeliac must be expensive). Their solution is for this person to go come off of the gluten free diet, to have the condition damage the small bowel again and then when the symptoms return, to have the biopsy and examine the damage done! Yes that's right, even though it's taken the best part of 18 months for the damage to be repaired in the first instance, and despite every doctor taking the Hippocratic Oath (part of which states that a doctor should "never do harm to anyone"); the NHS wants this person to damage their small bowel, go through all that pain and suffering just so that they can have another go at diagnosing something that they have mis-diagnosed for 19 years!!
So that's where we are at the moment. This person is off the gluten free diet and is feeling totally miserable, whilst they wait for an appointment to arrive to have a test, to prove what that person (and their GP) already know. Man, you've got to love the NHS eh?!
Technorati tags:
Coeliac,
NHS,
BBC