The downside of the NHS

I have had a lot of brilliant free treatment from the NHS. The NHS is amazing BUT
5 weeks ago, [November 18th], I drove to Brighton for NCS & EMG tests for my suspected Peripheral Neuropathy. The results would take about 2-3 weeks I was told. I hadn’t heard anything so I emailed my Neurologist to see if he had the results. Then 11 days ago I had this email from my Neurologist, Dr Ali.

“Thanks for your email. Our consultant Dr Ali has dictated a letter giving you the test result and advising next steps. The letter should reach you in the next few days”.

Clearly “advising next steps” means that something was found, I was concerned so I phoned the Neurologist’s secretary & was told that the “letter” was in his in-tray, after he dictated it, waiting for him to sign it. As he hadn’t signed it she could not read the letter to me. I quizzed her further & she told me that I would be needing more blood tests to see if the problems causing my Neuropathy could be reversed.

So here I am 11 days later still not having received this letter. It is 23rd December & we have Xmas & the New Year. So God knows when I will get this letter & be able to book these blood tests. You would have thought I needed these tests sooner rather than later.

The other BIG QUESTION I have is why didn’t the NHS email me the letter saving both time & money?

I am having real difficulty with my mobility. At times I cannot walk. So getting this sorted is important to me. My life is on hold waiting for this bloody letter.

Ho hum.

Happy Xmas everyone

Just sending love

NHS consultant is very good but the minute you walk out of their office you are on your own! Last visit there were changes to medication promised and fast forward several weeks later, still same doses being dispensed at the chemist. Chemist blames GP, GP blames consultant. Consultant wont email new dose (presumably because it cant know for sure who has read it, not read it, gone to spam, be hacked?) so a letter has to go by snailmail. But how long would it have taken if it wasnt questioned? Am surprised the secretary gave out that information to you TBH.
Is there enough admin staff to transcribe letters, download results for the consultant to read etc? Are there enough consultants? The whole system seems under pressure.

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Good morning TheLippyOne … Thank you for your reply. I actually cut out bits of information. My Neurologist is / was a Dr G, an Armenian Neurologist who has just left the NHS & returned home. So the NCS / EMG results went to this Dr Ali who I have not met. I was due to see Dr G a few weeks ago but that appointment got cancelled, as he had left for Armenia. Clearly they are short staffed & where will Dr G’s patients go?

I did find out from my Parkinson’s nurse that DR G’s specialty was Peripheral Neuropathy not Parkinson’s.

You are quite correct that things go round in circles. I ask my GP a question & he says
I should talk to my Neurologist, But I don’t have one. Who should I talk to?

My whole diagnosis is a grey area … Is my mobility problems my Neuropathy or Parkinson’s? or both?

I have still not had the dictated & typed letter [in his in-tray] from Dr Ali giving me my Neuropathy test results, Now 16 days & counting.

Common sense says that the secretary should have read me the letter & told me what the position is.

Best wishes & thanks for your interest.

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Update … I was finally emailed the letter from Dr Ali that was dictated at least 23 days ago. I have been given a clinical diagnosis of distal sensory axonal large fibre neuropathy. Does anyone know what this is? I have of course googled it but nothing made sense to me.

I asked my GP to do the blood tests required to see if my Neuropathy could be reversed. But was refused & given the telephone number of the Bexhill Diagnostic Center as the blood test request was from my hospital Neurologist. I phoned them at 12.45pm today & had the blood test done at 1.20pm. What fantastic service.
I was most impressed. Free parking & no delay with friendly staff.

Best wishes

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Glad to hear you are making a bit of progress. I think it is very unfair to be landed with a diagnosis like that in this way and i hope you can go back to the neurologist and have the opportunity to get more information

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