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"Saddened and appalled"

About: Aberdeen Royal Infirmary / Neurology (Brain, Spinal and Nerves)

(as a service user),

I was diagnosed with complex partial epilepsy in 2021/2022 after many tests, an abnormal MRI,abnormal EEG etc. And commenced on medication.

Since having my new consultant I have been told I am just a woman in a stressful job, likely suffering hysteria. One of the previous registrars told me i was past my prime.

I fought for a year after they became uncontrolled to increase my keppra after epilepsy caused me months off work and led me to a dark place postictally. It worked, but they still aren't satisfied. They don't send the letters that say it's possibly FND even though I've never shown that and they have never got a collateral history from anyone witnessing these epileptic attacks. Even after asking and asking.

I asked for a second opinion a year ago, and it's just terrible. You can't say they've changed or you had a seizure as I'm struggling to not postictally vomit and thus multiple meds aren't getting absorbed otherwise the dosage is fine. I just want a quiet life, to be believed and helped and not treated without any dignity or respect with no letter follow ups and no help when I need it. Simply not believed but on max dose antiepileptics that do work but i likely need iv for a day or two until my sickness settles.

I give up with the service, and living alone and working which is my joy and life now is all uncertain. Neurology and specific consultants have destroyed me and even at my worst I may as well stay at home or lying in the street than seek help when you will give none. 

I am saddened and appalled.

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Responses

Response from NHS Grampian 9 months ago
Submitted on 19/08/2024 at 15:41
Published on Care Opinion at 15:41


Dear nashiraxb65.

I am really sorry to hear of your experiences. This is not something I would want anybody to feel. We aim to treat all individuals as a person.

To look into your specific case and the allegations that you make it would be very helpful if you could let us know your details. Without that I can only answer in a very general manner.

My advice to you is that it sounds like you are still having many symptoms. I would suggest that you contact your GP to see if they can help or to seek further referral to the Neurology team. I know you feel that we didn't help last time but we really do want to help.

Of course, we are very stretched at the moment but we can prioritsie our workload to help people such as yourself. Please do not feel disheartened and I hope that we can help and serve you in the future

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