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"Failure to access a diagnosis or care"

About: General practices in Lothian

(as the patient),

I want to start with the fact that I'm glad nobody has dismissed my chronic pain as in my head.

However, after receiving a working theory of fibromyalgia with hEDS from one GP, my new GP has repeatedly dodged the topic of investigating a diagnosis and instead focuses on treatment. I would be okay with this if they were providing any sort of treatment. I am no longer eligible for any sort of medication after I was essentially overdosed on SNRIs by my GP who I believe upped my dosage too much, far too quickly. This came after prescribing me painkillers which I repeatedly pushed against on the grounds of my opiate allergy and they are not an effective treatment for chronic pain. These caused me a 3-day long reaction and a major flare up. When informed of this, my GP prescribed me stronger painkillers.

My GP has continuously provided minimal information to the disability service and social security in regards to benefits, and refuses to tell me what is in my notes or what is in my referrals. 

This same GP appears to ignore other symptoms I feel need to be addressed urgently, such as a skyrocketing heart rate, severe dizziness, incontinence, neurological symptoms, suspected neurodiversity and early PCOS/Endometriosis symptoms, in favour of asking me about my pain... again.

Physio has rejected me 3 times on confusing grounds and Rheumatology has rejected me twice. I have broached the subject of diagnosis once again as both conditions we are looking at are diagnosable by a GP but once again have been fobbed off. I have been dismissed from the pain clinic as they are not the right place for my care. I have seen every GP at my practice and have been rejected by all other practices due to already having a GP.

All of this, on top of my existing health and mental health issues, have caused me extreme anxiety and hopelessness. Nobody should have a panic attack about a Dr appointment. Nobody should have breakdowns and nightmares about their GP. Nobody should walk into a GP practice ready for a fight.

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Responses

Response from Louise Davies, Patient Experience Officer, Patient Experience Team, NHS Lothian 10 months ago
Louise Davies
Patient Experience Officer, Patient Experience Team,
NHS Lothian
Submitted on 26/06/2023 at 15:36
Published on Care Opinion at 15:36


picture of Louise Davies

Dear elielieli

Thank you for taking the time to share your feedback via Care Opinion.

I am really sorry to hear of the difficult time you are experiencing, and the challenges you are facing regarding diagnosis and lack of treatment. This must be incredibly frustrating for you.

If you haven’t already done so, I would suggest you raise this as a complaint with your Practice Manager. If you remain unhappy with the outcome of your complaint, you can contact the Scottish Public Services Ombudsman and ask them to look into it. More information can be found at: https://www.spso.org.uk/contact-us.

I am sorry I am not able to help further at this time, but hope this information is useful.

Best wishes

Louise

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Update posted by elielieli (the patient)

Hello,

Thank you for your response and for acknowledging how frustrating this is, it's validating to hear that I have been understood for the first time.

As for launching a complaint with my practice manager, I will get that started right away. However, I have no idea where to go about Rheumatology refusing to see me despite my suspected condition being advertised as a condition they treat. As far as I can see I cannot contact them directly, would this be something to contact NHS Lothian about? Any guidance on this would be amazing.

Response from Louise Davies, Patient Experience Officer, Patient Experience Team, NHS Lothian 10 months ago
Louise Davies
Patient Experience Officer, Patient Experience Team,
NHS Lothian
Submitted on 11/07/2023 at 15:06
Published on Care Opinion at 15:06


picture of Louise Davies

Hi elielieli

Please accept my apologies for the delay in getting back to you - I had missed your reply.

Regarding the Rheumatology service, I would recommend contacting our Patient Experience Team. They will be able to look into this for you. Their email address is feedback@nhslothian.scot.nhs.uk or if you would prefer to call, the number is 0131 536 3370. Phone lines are open Monday to Friday 9am to 2pm.

When contacting the Patient Experience Team, please provide your name, date of birth, address, contact number, and details of your concerns. It may also be helpful to make reference to this Care Opinion story.

Best wishes

Louise

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