HERE WE GO AGAIN

[LoolooLacey2]

After attending an Outpatient Human Genetics on 6th February at a Hospital 22 miles from home, I arrived to find it was supposed to be a "Combined Clinic" of Human Genetics and Neurology. However, I was never told this, but did notice the only Clinic Title on the Notice Board was "Neurology Clinic". After a wait of 30 minutes over my appointment time I was called in to find the Neurologist NEVER TURNED UP - I have now heard it all - wow! Luckily the Human Genetics Dr is a chap I saw way back in 2001, he did apologise and after a chat they took some bloods and promised to get me an urgent follow-up at Neurology. Well that did not happen so I contacted this Dr. and he took the reigns and assured me he would get me an appointment at the Neurology OP Clinic in my own home town. I waited again and thought enough is enough I contacted the Secretary of the Neurology Dept at the Main Hospital who did a search to see where my referral was and low and behold it was now in my home town. Once again a wait of a week and nothing, so I phone my local Hospital only to be told yes they had received my referral (originating in NOVEMBER 2017) was marked as ROUTINE and it could be up to 28 weeks till I was seen. Wait for it - it will be a YEAR before I finally see a Neurologist if I am lucky. You could not make this up if you tried. Only thing that keeps me going is if it turns out to be CMT there is not much that can be done, however a DIAGNOSIS would be good. On the plus side the Human Genetics Doctor has sent my bloods away (stored blood from 2001 as they never destroy their samples) to be tested for CMT and a final diagnosis of what kind of Myopathy I actually suffer from, so well done Dr. I have positive EMGs and Nerve Conduction tests from 26 years ago with very unusual findings, but hey ho my Referral is ROUTINE??????? Back on the waiting game trail once more. Moan over.

[Amanita]

I think you are entitled to a great big moan, Looloo.

It is dreadful the NHS has let you down so badly - and after all that to find you are only classified as "routine" and facing yet another long wait. Even if it does turn out to be CMT, and depending on how it affects you, there may well be things that can be done to help you live with it.