Monday, 21 September 2009

My Misdiagnosis

There was a radio programme this morning about patients being misdiagnosed alongside calls for the number of wrong diagnoses to be recorded. I haven't formed a view on that yet but I can sympathise with people who go through it, having been there myself. The consequences for my health were manageable but the knock on effect on my life were significant to say the least.

A few years back I decided to do a postgrad in primary teaching and embarked on it with great enthusiasm. One night in December I woke up with the most horrific searing pains shooting through my face. I remember that first time clearly. I was scared. As well as the "boring drill-like" pain it was like having mini electric shocks all over one side of my face. I have a high pain threshold but I'd never experienced anything like this.

Normally it takes me till I'm feeling better to get round to seeing the doctor but this time I went immediately. She didn't even have to think about it and very quickly diagnosed Trigeminal Neuralgia more commonly known as "the suicide disease" because the extremity of it and the difficulty in treating it lead many sufferers to contemplate and even attempt suicide.

Anyway nothing they prescribed worked. I ended up in hospital once after almost collapsing with the pain as I was driving past the Royal Infirmary. I saw neurologists. I had brain scans to rule out a tumour - that in itself was surreal. The neurologist did a few other tests and suddenly said "we'd better get you a scan seeing as you've got a few symptoms that could suggest a tumour"! After being told it would be 2 weeks, I got a letter 2 DAYS later telling me to be at the Southern General 2 hours later. So there I was all on my own going through this scary brain scan.

And all of it turned out to be unnecessary. The vast majority of TN sufferers have several teeth removed before diagnosis because GPs almost always put the pain down to dental problems. I have to be different. My GP said it was TN but a visit to the dentist 6 months later showed up dental decay putting pressure on the trigeminal nerve, giving me exactly the same symptoms but also giving me a solution. A cure. And it was a cure. As soon as the tooth had been treated, the pain disappeared.

Unfortunately by that time my teaching practise had been so interrupted that I'd failed one practice and finally been unable to complete the course. I was invited to return the following year but for a number of reasons, the main one being the debt I had accrued as a student with no income for a year, I just wasn't in a position to do that. So my misdiagnosis ended all hopes of a career in primary teaching for me and left me with a lot of debt with nothing to show for it at the end.

At first I was angry with my GP but my elation at being free of the most mind numbing, disabling pain I had ever felt overshadowed that. And after a time I realised that the GP was probably aware of the plight of TN sufferers who fight for years for a proper diagnosis. At least she was aware of it. You have to move on particularly when there was no malicious intent and she wasn't far off the mark. We can all make mistakes. What is more difficult to move on from is when a patient is crying out to be diagnosed with a significant illness that they're sure they have only to be told it's "all in their head".

I'm pleased to say that the Scottish Government does take patients' safety seriously and has introduced a Patient Safety Programme which I think is the first in the UK. It doesn't include reference to misdiagnosis however and as I said, I would be interested to hear more about why it is important to record that information. It's an interesting topic and one that the BBC were right to highlight.

1 comment:

  1. Here's one reason for recording misdiagnoses that has nothing to do with blame: in order to promote an airline safety approach to patient safety. High risk industries do so well in avoiding accidents because they promote a safety culture. One reason for the much higher level of accidents in health care is a lack of systematic risk management, presumably the patient safety programme is designed to address this.

    The other reason is a reactive culture in which health care practitioners and their bosses cover up mistakes. This is much harder to address and can only be done by promoting a safety culture in which every member of a team is encouraged to report accidents and near-misses, without regard for hierarchy. See for an example of the kind of culture change that is needed
    Airline staff report near misses, not so the pilot can be blamed (hopefully) but so lessons can be learned.