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"How is it possible I've gone backwards without being informed?"

About: Neurosciences (DCN) / Neurosurgery

(as the patient),

I have had numerous dr appointments, emergency hospital visit, scans which has been ongoing for over a year. I've had several periods of incontinence, which I have reported to the Dr who sent me to A&E but I was informed that they weren't concerned it was related.

I am in my 30s, I have never in my life suffered incontinence before now. I have a prolapsed disc, which is causing sciatic pain down my left leg, numbness constantly down my left leg below the knee. At times this spreads up my thigh. I feel like I have water running down my leg constantly. I wake up in the night from 3 am onwards in excruciating pain because I can't lie down for long periods. I am then absolutely exhausted due to all the medication I am on to try and keep the pain at bay - all of which don't help enough.

I was referred to Edinburgh Royal Infirmary - neurosurgery. I called in February 2023 to find out how long I would be waiting. I was told 9 months. Which again isn't what I wanted to hear considering the daily pain I am in, but I accepted it. That takes me to September. I called and I've been told it's now 11 months and my earliest potential appointment is February 2024!! 

How is it possible I've gone backwards without being informed? With no improvement to my condition. I have a restricted life due to being unable to take part in anything. I'm gaining weight due to being unable to exercise or walk for any length of time. I've finally returned to work after them adapting my entire job role to allow me to. Which again causes me difficultly sitting all day. I have to work though, to provide for my young child. 

I question if because I am young, I am being made to wait. 

I feel absolutely failed by our NHS. 

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Responses

Response from Joseph Mutasa, Clinical Nurse Manager, Clinical Neurosciences, Royal Infirmary of Edinburgh, NHS Lothian nearly 2 years ago
Joseph Mutasa
Clinical Nurse Manager, Clinical Neurosciences, Royal Infirmary of Edinburgh,
NHS Lothian
Submitted on 22/08/2023 at 15:07
Published on Care Opinion at 15:07


Dear thubanqq54,

Thank you for sharing your feedback with us via Care Opinion, that is much appreciated. I am very sorry to hear about the journey you have been through, and that you felt let down by our service. Please accept my apologies for any stress or inconvenience this has caused you.

I would appreciate an opportunity to fully investigate the issues raised and provide you with a detailed response. May I please ask you to contact the Patient Experience Team, either by email at feedback@nhslothian.scot.nhs.uk or by telephone 0131 536 3370 (lines are open Monday to Friday 9am to 2pm), to provide your details and it would be also helpful if you could make reference to this story on Care Opinion. This will allow us to look into your situation further.

Kind regards

Joseph Mutasa

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