NHS and doing the chasing.

New diagnosis and before diagnosis
1

There are good and bad points to the NHS but I always feel I’m doing the chasing and if anything can go wrong it does.

2001 Waited 15 months for an MRI scan that MS specialist requested as my condition had progressed.

I’ve got another patients records mixed up in mine, including her operations, bladder problems, name and address.

I’ve got another patients SSEP’s results in my notes. Mine showed a right side weakness, this patients shows arms both weak. I told a neuro these weren’t my results.

Another neuro got quite stroppy with me for missing two appointments. We explained to her we didn’t receive any appointments. Then we told her we had been having lots of problems with Royal Mail. She virtually accused us of lying and said mail does not just go missing.

Last year I got two letters reporting on my appointment. The front page of my letter was addressed to a neuro in manchester who had referred his patient. It reported on what they had found. The back page was a report on what they had found with me. So did the Dr in manchester get my first page? I had to send the letter back and explain what they had done.

Last April, ten months ago I had an appointment with a team of Dr’s. I’m now into my fourteenth year of MS , not MS, MS, neurogenetic disorders and then neuromyelitis optica. I was told they’d get me as near to a diagnosis as possible. I haven’t heard a thing since.

I haven’t heard a thing so last week took the bull by the horns and emailed their secretaries explaining my condition had progressed over the years and I would appreciate to know if I’m getting a follow up appointment.

I don’t even bother with my Opthalmologist any more. I didn’t ever receive steroids for my ON. I now have optic atrophy and just get told there is nothing we can do. I’ve had nystagmus, scleritis, episcleritis and I just get discharged. I’m not allowed to drive due to vision loss.Yet if I had diabetes, macular degeneration I would be closely followed. I have to pay for vision tests yet if I had a relative with glaucoma I would get this free.

Sorry for the rant. It just gets to the point where you are banging your head against a brick wall all of the time.

Jacqui x

2

Hi Jacqui

What a rotton time you’ve had, its so frustrating isn’t it? I’ve gone through periods of being completely infuriated with NHS incompetence, to getting virtually down on my knees and thanking God for the NHS, to giving up and paying privately. There’s so little sense of continuity and so much burocracy its mindblowing at times!

I hope things are improving with your mum?

(((hugs))) xx

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(((((((((((((HUGS)))))))))))))))

Your story should be told in detail in every medical school around the country - as an example of how NOT to do it

I hope those emails get something moving!

Kxx

4

Anon, that’s it the lack of continuation. Also thank you for asking about my Mum. You’ve got me wondering who you are. She’s now in to her 6th week and supposedly rehab but it’s more like a nursing home. The ITU team did save her life and I’ll always be grateful to them.

Karen, thank you for your continued support and friendship : )

5

Although I’m at the beginning of my journey I know how you feel and its not right. I’m sick of telling medic’s my ‘story’. They often seem incapble of reading previous notes. Plus consultants dont seem to talk to each other. Have you got a good GP - mine is brilliant but she’s emigrating!

Dont know what else to say really - try to stay positive (easier said than done). I’ve found your advice invaluable (and Karen’s) - thankyou.

Sue