"It seems I may never see a neurologist"

New symptoms started October 2019, after many tests and hospital stays it is deemed to be neurological, rather than malnutrition related to gastroparesis as originally thought. Urgent referral requested early April 2020 for neurology.

Received two replies to my search for my waiting time in particular and waiting times in general as a result of Covid pandemic. The first was from the office of the Scottish health secretary from my enquiry in late June. The letter was quite good in a limited way, whilst sympathising with my plight, and remarking on the consequences of Covid 19 and the changes which had to be made. They pointed me to the government web page indicating the framework for remobilising the health service. I am aware of this document, and to be honest, whilst it gives a lot of information, there is nothing about timing, and worryingly phase three includes flu vaccinations normally given from October onwards. So phase three has a bit to go!

The second communication by phone from the patient affairs office at Wishaw General. I guess there is no easy way for someone to tell you bad news. It seems that someone, somewhere has removed my name from the urgent list and with the present limited access and long waiting times it could be up to a year before I will be seen by neurologist. Shock, disbelief, brain fog, kicked in and I must have rambled on to the poor staff member for what seemed an eternity. After the phone call and the consequences for me began to set in, I realised that someone I have never seen has bumped me off the urgent list. So my GP and two senior doctors from two different occasions in ambulatory care who seen me and ran tests, all agreed I needed an urgent appointment. Shouldn't my GP have been informed of this change? Not as yet.

So I phoned patient affairs and left a message, firstly apologising for my ramblings, and asking that a letter indicating reasons for removing me from urgent list be sent to my GP and myself if not already actioned. I do not normally feel anxious and worried, usually a glass half full person, always someone else worse of than me type of attitude.

This has rocked me to the core, but I need to stay strong and positive for my immediate family.

So way back I went to bed as normal as a gastroparesis warrior. Woke up shuffling like a penguin, nearly falling in the process. Brain fog, I now have a new party trick, I can say thing's which seem ok in my head but when I say them the words and letters are mixed up, eg "my lower fegs and leet have nins and peedles". I know as soon I have heard my self that this is wrong. Similarly with writing, I put the wrong letters in the right words. Thank goodness for spell checker or no one would understand what I am writing. 

I think NHS inform may have to revise the page on waiting times.

So, someone somewhere starts a pandemic, probably about the same time as my new symptoms start, and people are dying and lives are turned upside down all over the world. My wee bit of the world has to shut down, resulting in economic and social chaos. And it seems I may never see a neurologist.