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"Grateful to finally be given a diagnosis"

About: Neurosciences (DCN) / Neurology Royal Infirmary of Edinburgh at Little France / Neurosciences (DCN)

(as the patient),

Hello,

After 6 years of being passed from pillar to post in health services, I finally received a diagnosis. Unfortunately, this was of Functional Neurological Disorder (FND), which is incredibly difficult to manage, however, being given a diagnosis that seems accurate finally gives me something to work with. 

It has been a long journey of being dismissed and doubted which now makes all interactions with healthcare staff anxiety-provoking. However, I eventually saw a patient consultant neurologist (I have a tendency to digress when anxious) who seemed to listen intently to the meandering explanations of my symptoms. 

I felt the doctor was very thorough in his physical exam which helped enable me to have faith in this diagnosis. Although I am still to be tested for a structural condition, I am grateful to know that there is hope for improvement with the FND symptoms. The consultant even offered to email me further information which is helpful (I have still to receive this as the appointment was very recent).

The only negative about my experience (which had nothing to do with the doctor) is that my anxiety is now so bad at health appointments that I struggle to articulate myself as clearly as I can. This has left me with some questions that did not come to mind until afterwards, (such as follow-up appointments, and time scales for testing for the structural condition. I also think I may have misunderstood one of the doctors' comments about part of the exam). It would be helpful to know if these questions could be directed anywhere. Although perhaps this isn't a common experience which may mean there is not a process in place for this.

Overall, my visit to the department was refreshing with a calm environment and friendly and respectful staff. 

I'm unsure if I can name specific doctors on here so I won't for now. However, I hope my gratitude can be forwarded to the department. 

Environment

Environment


Appointments

Appointments


Transport

Transport


Reception

Reception


Staff attitude

Staff attitude


Staff skills

Staff skills


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Responses

Response from Ana Mezzomo, Patient Experience Officer, Patient Experience Team, NHS Lothian 2 months ago
Ana Mezzomo
Patient Experience Officer, Patient Experience Team,
NHS Lothian
Submitted on 21/02/2024 at 15:26
Published on Care Opinion at 15:26


Dear Lillypond,

Thank you so much for taking the time to share your feedback with us via Care Opinion, that is greatly appreciated.

I am very sorry to hear about the journey you have been through, I can understand how this long journey to receive a diagnosis, and the feeling of being dismissed and doubted has affected your confidence and made all interactions with healthcare staff anxiety-provoking.

I am so pleased to hear that you had a positive experience whilst attending the Department of Clinical Neurosciences. It sounds as though the staff involved in your care did a great job at listening, reassuring, and supporting you. The team will be thrilled to know about the positive impact they have made on your journey.

Please be assured that your comments have been shared with the team who will be delighted to receive it.

Thank you again for sharing your experience and I wish you all the best in your ongoing treatment.

Best wishes,

Ana Mezzomo

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