Case Study - From GP to patient

This GP thought he understood the impact that illness had on patients, until he became a patient himself.

Tiredness and poor concentration affected the GP’s working life (Photograph: SPL)
Tiredness and poor concentration affected the GP’s working life (Photograph: SPL)

Surely, these days, a patient would not be given a diagnosis in front of a group of strangers on an open medical admissions unit, be told the treatment, with no opportunity to discuss it, then given an outpatients' appointment five months hence.

But I was that patient.

In May 2010, I suddenly became aware that I was no longer in my cosy living room, I was strapped to a trolley in an ambulance with a man trying to put a needle in my arm.

'You've had a fit, we're taking you to hospital,' I was told. There must have been a mistake. The last thing I recalled was eating my supper on the couch watching Taggart on the TV.

After being clerked by the F2 doctor, a long sleepless night ensued followed by the post-take ward round at 9am. My case was presented to the consultant in full ear-shot of the rest of the six-bedded ward.

The consultant announced: 'Sir, you clearly have epilepsy but your blood tests are normal. We will start you on sodium valproate, which you must take religiously until you see the neurologist in outpatients. We will send you an appointment.'

The consultant was not aware I was a GP and no explanation was offered as to what epilepsy was or what possible side-effects I could expect.

Before leaving the bedside, his parting shot was: 'Sir, if you drive a motor vehicle you must now stop driving for a minimum of 12 months.' No questions regarding my social situation, my occupation or the need to contact the DVLA.

I arrived home, still shell-shocked, clutching my new medication.

I called my very understanding GP and after a discussion we decided to hold off medication until I had seen the neurologist. I had only had one seizure so far and the idea of committing to long-term medication did not appeal. My driving licence was duly surrendered to the DVLA.

Neurology referral
No CT scan or EEG had been performed, yet I was still expected to take sodium valproate daily until I saw the neurologist five months later.

I am afraid to say I phoned the neurologist's secretary to 'pull rank'. The neurologist agreed to see me in his outpatient clinic in three weeks' time.

At the appointment I was allocated to the registrar, a pleasant lady who, after taking a thorough history (but no examination), told me that I most likely had epilepsy and would like to start me on lamotrigine in an increasing dose. She also arranged an MRI scan and sleep-deprived EEG.

The consultant did not even have the professional courtesy to put his head around the door to say hello, despite the fact that I had been referring him patients both NHS and privately for almost eight years.

I asked about the side-effects of lamotrigine and was told most people are fine, but with a bit of nausea. A follow up appointment was made for six months later.

A bit of nausea turned out to be an understatement. I ate little and lost a lot of weight over the first month while increasing the dose. My short-term memory almost completely went, my concentration span was short and I slept two to three hours every day after work.

Another seizure
After five months, I had another fit. The dose of lamotrigine was increased after discussion with my GP. I had to take time off work as my cognitive function became so poor. We reduced the dose again slightly but I had another seizure. Life at the time was pretty miserable. I became agoraphobic. I am still terrified I will have a fit while out on my own.

I insisted on seeing the neurologist and he recommended we switch from lamotrigine to levetiracetam over a six-week period to a target dose of 750mg twice daily.

Life now
My cognitive function remains poor even on the levetiracetam alone. I have even considered at times weaning myself off the medication altogether and taking the risks of further fits.

I discovered the National Society for Epilepsy which put me in contact with an epilepsy specialist nurse who has been fantastic with her advice.

I now work one to two hours each morning on a day-to-day basis depending on how I feel cognitively. I still need to sleep three to four hours most afternoons and have a very poor memory. I am told these side- effects will settle with time.

As a GP, I am embarrassed at the treatment and lack of information I have been given at each stage. I feel let down. I was given a diagnosis without any explanation of the life-long implications. I was prescribed life-long medication without any discussion of side-effects or alternatives. I was given no information of where to turn for support, not even a single sheet of written information.

My GP was the only obvious place to turn for advice and I am a GP, so what chance does the average patient have?

Surely we need a better system of informing patients. Perhaps my experience has been unique, but I doubt it.

  • Contributed by a GP who wishes to remain anonymous.

 

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