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Poor communication

Posted By KateQB

"Poor communication"

About: East Lothian Community Hospital / Ophthalmology

(as the patient),

I have injections for macular degeneration. I am usually asked if I am on antibiotics but have never been told why or what the consequences might be. At my most recent visit, I asked and was told that if I had a current infection being treated with antibiotics then I would not receive the injections. Since I have to travel over an hour to get here, and the waiting lists for injections are very long, this would obviously be a severe and unexpected setback. Please make sure this problem is clearly flagged up in the appointment letters so that people can cancel and rebook before travelling if necessary. 

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Responses

Response from Louise Davies, Patient Experience Officer, Patient Experience Team, NHS Lothian last month
Louise Davies
Patient Experience Officer, Patient Experience Team,
NHS Lothian

Submitted on 06/05/2025 at 12:23
Published on Care Opinion at 12:23

picture of Louise Davies

Dear KateQB

Thank you so much for your feedback suggesting patients are informed prior to their appointment that they will not be able to receive their scheduled injections if they are on antibiotics. This certainly would be inconvenient for someone to discover after travelling to the appointment.

I have passed your feedback on to the Clinical Management Team to review and consider how they may communicate this to patients.

Thank you again

Louise

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Response from Louise Davies, Patient Experience Officer, Patient Experience Team, NHS Lothian 2 weeks ago
Louise Davies
Patient Experience Officer, Patient Experience Team,
NHS Lothian

Submitted on 21/05/2025 at 09:52
Published on Care Opinion at 09:52

picture of Louise Davies

Hi KateQB

Just to follow up, I have discussed your feedback with the Clinical Management Team who would like to thank you for raising this.

They have advised that this information is in the Macular Passport which has recently been updated and is given to all Macular Degeneration (AMD) patients. It is also usually given verbally by the doctors on the initial consultation, nurses booking the patients in as well as the nurse at first injection. They are going to look into your suggestion to put a reminder on their letters or digital notifications.

Thank you again for taking the time to share this with us.

Louise

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Update posted by KateQB (the patient)

What is this Macular Passport? I have never been given anything like that and have been receiving injections since 2018 in London then from 2022 in Edinburgh. I have had only brief face to face consultations with three different doctors and I don't recall any of them talking about antibiotics. Nurses always ask on the day if I am on antibiotics but as I said in my original note, they never tell you why.

I have to say while not satisfied, I am grateful that you are at least considering putting the information on the appointment letters. Please remember that going for an injection into the eye is not an experience that ever becomes routine, however long you have been having them. You still need to psych yourself up before the long journey to the clinic (even longer while the Pavilion is out of service and we have to go to Livingston or Haddington). I am infinitely grateful to the nurses who are calm, efficient, and always kind. Please try to ensure that the organisation around them is also aware of the patient experience.

Response from Louise Davies, Patient Experience Officer, Patient Experience Team, NHS Lothian last week
Louise Davies
Patient Experience Officer, Patient Experience Team,
NHS Lothian

Submitted on 27/05/2025 at 14:57
Published on Care Opinion at 14:57

picture of Louise Davies

Hi KateQB

Thanks for your reply, the Management Team are interested to learn more about your experience. If you would feel comfortable, please can I ask you to email the Patient Experience Team providing your contact details and making reference to this Care Opinion story. The email address is LOTH.Feedback@nhs.scot. I will then be able to forward your details on to the Management Team to get in touch with you.

Thank you

Louise

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