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I feel really alone, very frustrated and very scared

Posted By zuluhy95

"I feel really alone, very frustrated and very scared"

About: Queen Elizabeth University Hospital Glasgow / Gastroenterology (Stomach and gut problems) Wards 8b, 8c &8d

(as a service user),

Since I was diagnosed with Crohn's disease several years ago I have had annual in-person check-ups with the gastroenterologist at Glasgow's Queen Elizabeth University Hospital. Sometimes appointments were more frequent if I needed specific treatment or care. During the pandemic these appointments moved to phone calls, so I have not been seen in person since 2019.

This year they cancelled my appointment, and I had to call several different numbers to try and find out what was happening. I've now been told that clinics are too full and I won't get a space. I am experiencing flare up symptoms, and I am in need of medical care.

I have been referred to the IBD nurse helpline, and was given an appointment at a specific time recently. I had 3 missed calls from the helpline, all at different times that weren't my appointment time, that day. I work during the day so I need a fixed time to speak to a nurse. I have now managed to get a hold of them again, but now they're saying they can't give me a fixed appointment time, they'll just try me a few times over the day, and if I don't pick up I have to call back and start all over again with arranging a time to speak to them. At this rate it could be weeks before I actually am able to speak to someone.

I am experiencing fatigue, brain fog and pain and it is difficult to remember to constantly phone and leave messages. I shouldn't have to chase the NHS to meet my needs, but that is what is happening.

The helpline nurse sounded annoyed when I asked about getting a fixed appointment time - I don't think this is an unreasonable request, given that I have a serious health condition and I work during the day. I actually work for the NHS, and this all completely baffles me.

I feel that this service is broken, it doesn't work for people at all. I feel really alone, very frustrated and very scared. I thought my health was in good hands but I really don't feel like that any more. I don't know where to turn for care. 

Appointments

Appointments


Staff attitude

Staff attitude

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Responses

Response from Lisa Martin, Patient Experience and Public Involvement Manager, Patient Experience and Public Involvement Team, NHS Greater Glasgow and Clyde 5 months ago
Lisa Martin
Patient Experience and Public Involvement Manager, Patient Experience and Public Involvement Team,
NHS Greater Glasgow and Clyde

Plan, design and deliver patient and user engagement opportunities

Submitted on 24/11/2023 at 11:47
Published on Care Opinion at 11:47

Dear Zuluhy95,

Thank you for taking time to share your experience with us, and please allow me to say how sorry I am that you are having these issues regarding your appointments with the IBD outpatient service. We'd like to invite you to contact us directly so that we can find a solution for you.

Can you please email us at Patient.Experience@ggc.scot.nhs.uk and provide your name, date of birth and (if you know it) your CHI number - this can be found on any appointment letters you may have had.

Thank you again and we hope to hear from you soon.

Kind regards,

Lisa Martin,

PEPI Manager,

Patient Experience Public Involvement Team.

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