llywela | family stuff

Some of you might remember that just over a year ago my older sister was taken ill and (eventually) diagnosed with viral meningitis. She hasn't been right since. The treatment she's received over the past year has been shocking - so many different doctors, who kept first confirming and then denying the diagnosis, changing their minds all the time, mostly because none of them actually know anything about viral meningitis. She had to go private to get the tests done that she needed, then when she finally got to see a consultant neurologist, months later, she found that the test results had been lost. And because the test results had been lost, the doctor refused to believe there was anything wrong with her and took her off all her medication. Months later again she had a follow-up appointment where the first thing the doctor did was apologise profusely because the test results had turned up, proving that she actually had been ill all along and should have been on that medication still all that time - except, of course, that they couldn't have been all that sorry, because if they were they'd have called her back in immediately to get the medication right instead of leaving her without treatment until the appointment! Meanwhile, her symptoms have continued all this time. She still suffers from chronic migraine. She's lost her peripheral vision and is almost blind in one eye. She still can't remember what certain sounds are associated with (i.e. a motorbike will drive past the house but she won't recognise the sound for what it is). She still gets certain scents and tastes mixed up in her head and can't remember what food she likes. Her personality has changed, in subtle but noticeable ways. She's had to give up her 20-year teaching career because she was no longer well enough to continue with such a demanding job. It's been more than 13 months since she was initially hospitalised and all those symptoms remain.

So it was with interest that we spotted the results of a survey carried out by the Meningitist Trust, published to raise awareness of viral meningitis, which is not a widely known illness.

Summary of results
After-effects were experienced by 97% of respondents (Respondents were asked to tick all that were applicable to them):
Exhaustion (78%)
Headaches (70%)
Memory loss (50%)
Anxiety (37%)
Depression (37%)
Dizziness/balance problems (37%)
Hearing difficulties (23%)

Deb checks all those boxes. Clearly this is not an illness that is receiving effective treatment in any cases.

Full results here - some of the other survey results are really quite worrying - such as the fact that over half of all respondents said that viral meningitis had caused them difficulty at work or in education, but only a third had received treatment or therapies for the after-effects of viral meningitis. Only a third of all respondents were offered a follow-up appointment with the hospital and many felt that family, friends, health professionals or employers did not understand the impact of viral meningitis, and were made to feel “a fraud” because of the assumption that most people make a full recovery - such as that doctor who took Deb off all her medication because they'd lost the test results, which obviously meant there was nothing wrong.

It really is food for thought.