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"Jumped into a Rabbit Hole. Can I get out?"

About: Astley Ainslie Hospital Western General Hospital / Rheumatology

(as a service user),

Over the past 8 years, I have been unfortunate enough to jump down several medical rabbit holes. I don't think you have to have much of a medical background to guess at the impact of the following:

Rheumatoid Arthritis Flare 2012 - 2014 & 2019 to present day - Taking Chemo.

Osteo Arthritis 2010 on. New Left Knee needed - confirmed post scan 2017.

Full Body Neuropathies 2014 onwards.

Myalgic Encephalomyelitis - Moderate 2014 onwards.

Heart Disease - 3 same day Heart Attacks, 5 Stents. 2015/2016

Post Lymes 2018 onwards.

Severe Anxiety 2014 onwards.

Moderate Depression 2014 onwards.

During this time, much has been written about me and I have tried to digest it all. With all the disease plates spinning, It's not easy learning new terminology and my understanding of information & processes can easily become clouded or confused. 

So, I have recently had some things written about my mobility capabilities that have left me scratching my head. 

I'm not a complainer and I have already asked for clarification about what's been written, on more than one occasion. The responses have not shed any light on my queries and somewhat frustratingly, I've been signposted here, there and everywhere. 

Can someone from NHS Lothian help? I'd really appreciate some very simple answers to a couple of straightforward queries. 

I feel stuck and quite isolated in this rabbit hole. Maybe posting on Care Opinion can help get me dug out!?

Many Thanks.


Response from Patient Experience Officer, Patient Experience Team, NHS Lothian 2 months ago
Submitted on 08/12/2020 at 14:15
Published on Care Opinion at 14:22

Dear TweeterCal

Thank you for sharing your story via Care Opinion. I was sorry to hear about your experience and that you describe not having clarity regarding responses to your questions. It sounds like you are having to deal with an awful lot, and I can sympathise with all the information you find yourself faced with.

In order for us to look into this further could you please contact the Patient Experience Team on 0131 536 3370 or by emailing us at Would you be so kind as to make reference to your care opinion username as that would be very helpful.

Thank you again for taking the time to share your feedback with us and we look forward to hearing from you.

Best Wishes


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