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Welcome to www.donttrustyourgp.org, started 12 may 2003.

In the age of the internet we have many more sources of information: Say we heard of a doctor telling a mother there is no link between her child's arthritis and the MMR vaccine she had days previously. We can advise her to put "arthritis MMR" into the Google search engine. She will probably conclude that the doctor was wrong because, although most of the top documents implicitly support the use of MMR, they recognise the issue. (eg. See Measles/Mumps/Rubella (MMR) Vaccine from Manitoba Public Health.

Alternatively, you may be a type II diabetic. You go to your GP for a review. Before seeing the GP you get some dietary advice from a practice nurse. She's heavy on the fruit and brown bread. You may have just cut out almost all short-chain carbohydrates after getting tipsy on red wine with your favourite medics (followed up by putting "Atkins diabetes" into Google). You know (in your own amateurish way) the effects of diet from your own blood sugar measurements. You may come to the conclusion that the nurse's reference to the healthy diet poster on the wall is the blind leading the partially sighted.

From our involvement with www.actionagainsttranquillisers.org.uk we are aware of the disappointment that many feel over the prescription patterns of GPs as a group. "Clinical freedom" is said to be the GPs stand (and that is not completely without merit) but putting "Clinical freedom" with "Evidence based medicine" into Google gives some interesting results. The trouble for us ordinary folk is that "Clinical freedom" has been captured by the doctors and "Evidence based medicine" will be captured by scientists, whom we suspect are not independent of their sources of funding.

We feel obliged to put the usual "Please consult your GP" on this site. But it may be wise to do some independent research before and after the consultation. Perhaps, while you are discussing your health, why not be braver than some of us and discuss the trust issue.

Of the mothers known to us, only two have had children with meningitis. Both went to a GP with concerns about meningitis. Both were sent away and told not to worry. Late in the evening they ignored the GPs advice and saved their children by getting them to hospital where panic set in.

• Consider the false negative ("This definitely is not meningitis" when it actually is.). This is what our two mothers reported to us.
• This false negative should occur, say, in less than one in every thousand consultations.
• Assume there is no causal connection between the two cases. (The cases had different GPs and were a few years and hundreds of miles apart.)
• On a simple multiplication of probabilities, we have stumbled across a million to one chance.

This is a crude calculation. It has flaws that we will follow up soon. But we are not putting anyone on trial for murder (cf.Sally Clark).

One of our favourite medics has suggested a better response. "I don't think it is meningitis. But you know your baby. Look every half hour for symptoms. Rush to hospital if they appear." (For the symptoms see the Meningitis Trust).

In the case of one of the mothers, she said her baby had some spots that were positive to the "rolling glass" test before she went to the GP. He examined carefully, but only looked at spots, which were negative to the test. She didn't interrupt. She had handed over responsibility. She was relieved by his all-clear. But she still kept watch. Even though she reports the GP as saying "These spots will get worse before they get better", she rushed her child to hospital at midnight. Probably just in time.

Note: The score is now four wrong diagnoses out of four cases of meningitis known directly to us. One is reported below (Annie 17jul03a) and there is one in the pipeline.

I'd rather have a bad GP on the NHS than none at all. In the States, if you're poor and unemployed you have no health care. Usually, health care comes with a full-time job - two half-time jobs just don't count. I know people working 50 to 60 hours per week that have no health insurance.

But the NHS bureaucracy can be dangerous. I have a lot of moles and freckles on my skin. I would have liked a quick look by a specialist. In the States I could pay $50 to $100 dollars to see a dermatologist. My British GP cannot easily supply that service. She told me that, if one of my freckles or moles looked suspicious (growth or change), then I should come back and she would refer me to a specialist.

I would rather not do my own diagnosis. When is a change a change? I would much rather see a proper professional rather than have to do the guesswork myself. I know that dermatologists in the US have good recording and mapping techniques.

(Editor's Question: Mapping and recording seems particularly straightforward and simple process. What would a high street chemist or an out-of-town supermarket charge to run such a service?)

In Germany every employed person will have health insurance. But the self-employed need their own insurance and it is very expensive. If you are unlucky, it can be half of what you earn.

The unemployed and bankrupt can get insurance through the state but self-employed and part-time people cannot. Iknow of struggling self-employed who have no health insurance. My ex-boyfriend dropped out of health insurance after an accident, which broke his sholder. He had the initialoperations paid for but cannot now afford to have the steel bolt in his sholder taken out. When he had a recent infection in his sholder, he had to get antibiotics by the back door.

I keep my health insurance in Germany paid up - It costs 240 euros (£150) per month. I can use the NHS in York, I had to register via the University, so for simple ailments, I use a local GP. But for anything serious I would go back to Germany. When I go home I do the "medical rounds" and see my gynocologist and dentist.

Four years ago I had meningitis. I was aching and vomiting and disorientated. I also had a rash.

Both my mother and I thought that I had meningitis so I went straight to the doctor. Actually my rash did blanch - unlike the "classic" case of meningitis but the other symptoms where very strong, including a stiff painful neck.

Because it was a Sunday I went to the GP co-operative at a large hospital. I saw a doctor who was clear that it was not meningitis. Luckily, however, he did think that I had toxic shock syndrome so I was admitted to hospital straight away.

When I got onto the ward the doctors there thought it probably was meningitis and I was treated with strong antibiotics. Meningitis was confirmed about a week later when the tests came back.

The GP had been sure it wasn't meningitis. The doctors on the ward thought it probably was meningitis but kept open minds. In any case, they said that the treatment was suitable for both conditions.

Editorial: This piece happened because we were telling Annie about our website. She did not contact us because she had read our website. She is the third person we know personally to have had meningitis. All three were initially falsely diagnosed by the first doctor to see the symptoms. Perhaps Annie's case is not quite as worrying because the GP did diagnose a serious condition and took serious action. But in the three cases personally known to us the sequence has been :

• Patient: I think it's meningitis
• Doctor : Oh, no it isn't
• Audience : OH, YES IT IS

Today's Observer Magazine has this piece reporting research by the Meningitis Trust showing that few GPs feel confident in diagnosing meningitis. The Observer Magazine reports a particular case

Though the call was made at 1.50pm, the GP didn't arrive until 5pm, by which time Samuel couldn't bear to be touched. 'We discussed meningitis, but the GP was uncertain and muttering about measles,' says Cloke, who lives on a farm near Solihull. 'She finally decided it was flu.' The GP wrote a prescription for antibiotics, then left.

They also report

It's hardly reassuring, then, to learn that new research to be published tomorrow in the British Journal of General Practice shows that few GPs feel confident in diagnosing it, either. When it comes to suspected meningitis, there is still no systematic, step-by-step set of questions and tests at GP level. Instead, GPs are left to rely on instinct and past experience - and since most will see an average of two cases in their entire careers, this isn't much to go on.

Question: When GPs are not confident can they be taught to show some humility?

In two of the three cases personally known to donttrustyourgp.org.uk reported above the GPs gave a dangerously over-confident misdiagnoses. As we reported above, our favourite GP would have said:

"I don't think it is meningitis. But you know your baby. Look every half hour for symptoms. Rush to hospital if they appear."

This is echoed in the Observer article.

But, in Samuel's case, it was ultimately 'instinct' that saved him - but not the GP's. 'At the end of the day, you know your own child better than anyone else and I had a gut feeling,' says Angela Cloke. 'I just couldn't leave him for the night.'

(For the symptoms see the Meningitis Trust).

(Postscript 29jul03: The Meningitis Trust's emergency advice starts "If someone you know is ill and you suspect meningitis/meningococcal septicaemia contact your GP immediately.... If your doctor is not available go straight to the nearest Accident and Emergency Department" Given the research they commissioned, perhaps they should add "If you do see your GP and don't believe the diagnosis go straight to the nearest Accident and Emergency Department anyway." And why isn't this important research displayed prominently on their website? Are they just a bit too in awe of the medical establishment - cf. the Man in the Bar's view on the National Eczema Society below)

When my daughter was six months old she developed eczema. We now have a good GP, he has children of his own, and I would say "Do trust my GP". However, our previous GP prescribed steroids for my daughter and over the next eighteen months the strength of the doses was increased. Rather concerned, we got a medical encyclopedia which gave lists of the problems associated with steroids, especially with their long-term use. We decided to take alternative action.

We began to understand that the steroids were masking the symptoms and not attacking the cause. We looked at substances our daughter came in contact with and her diet. We joined the eczema society and took care to remove as many suspicious chemicals and foods as possible.

Initially we worked mostly on the assumption that the problem was due to skin contact. In the end we came to the conclusion that diet was the main problem and we started feeding her a diet of potatoes and gradually added other foods to find the "triggers" for her condition.

It was a harsh treatment but by the time she was 3 she had recognisable skin - before that she was largely red and raw. We used to sew gloves into her pyjamas so she would not scratch her skin off.

She is allergic to all forms of protein other than meat. Milk, eggs, cheese, whey etc. In the supermarkets it is almost impossible to find margarine without these in.

Our new GP is in the same practice and he was interested in our approach - he wanted to learn if it would work. Our original GP thought our approach was looney. He believed in the magic bullet effect of steroids, even when we pointed out the known side effects eg. thinning of the skin (for an eczema patient!). He told us steroids were the only effective treatment.

I hope our new GP has told his colleague how effective our treatment has been.

Note1: Our favourite GP comments: "Poor little thing. I'm glad she has seen some improvement. This shows how important the dietary approach is. Unfortunately not enough GPs know much about this. They are not taught about this approach in medical school and, of course, it is not in the interest of drug companies to inform doctors of advances in dietary medicine.

Note2: Food and eczema: Is the medical establishment a problem?

• The National Eczema Society "The role of diet in the management of eczema has not been ascertained. Generally changes in diet are only considered in severe cases, when conventional treatments are failing. Dietary changes can be quite helpful in babies and young children, though the effects on older children and adults are less conclusive."
• Auckland Allergy Clinic "Eczema is usually the first manifestation of Allergies & it usually starts about 4 - 6 months of age, around the time of weaning onto milk formulae. Cow’s milk is the commonest food allergen causing eczema, closely followed by eggs. In a recent study 35% to 40% of children with moderate-to-severe atopic eczema first seen by a university-based dermatologist were found to be allergic to food."

The Man in the Bar thinks that the National Eczema Society, being long established, has been influenced a bit too much by the medical establishment. Possibly so. They do say "A word of caution - always follow directions from your doctor - do not self diagnose or treat without the guidance of your doctor." But the man in the bar is glad he didn't follow his doctor's directions. Being a responsible website, the advise from www.donttrustyourgp.org.uk is this: Discuss serious medical issues with your GP but don't always expect the right answer.

There are some very good cheap drugs which were used for years. For example, thinning the blood, in cases of atrial fibrillation, Asprin and Warfarin have been very successful. (Voice from down the bar: My dad was on Warfarin for years.)

A problem with these cheap drugs has arisen because of the demands of "Evidence based medcine". Because there is no IP¹ in cheap old drugs they there is no incentive to market them or to put them through regulatory testing procedures. This now means that medical options which have worked for years are more difficult to use.

If you can't fund the evidence, you can't use the drug. As there is no direct incentive to test "tried and tested" old drugs (like digoxin) they are falling into disuse. Everybody knows they work, they have withstood decades (or centuries) of use but nobody owns the IP they must be replaced by more exotic drugs, which have been with us for a much shorter time.

¹Intellectual property e.g. patents