"Outstanding Care followed by a Deeply Disappointing and Stressful Experience"

After a sudden issue with my 11-year-old daughter’s eyes and vision, we attended the Children and Young People’s Hospital A&E Department. Naturally, we were worried and anxious, but the care we received there was outstanding. The Dr was everything you hope for in a doctor: calm, thorough, patient, and incredibly kind, not just to my daughter, but to me as a concerned parent. She took the time to explain everything clearly, included my daughter in the conversation, and treated her with genuine warmth and respect. We felt safe, reassured, and cared for. The entire team at A&E were excellent. I left thinking this is the NHS at its best.

Sadly, the very next day, our experience at the Eye Pavilion could not have been more different.

We had an appointment first thing and arrived early, but sat in the waiting room with no communication whatsoever for over an hour. Not a single update, no explanation, and no apology for the long delay. That is difficult enough as an adult, but for an already-anxious child with an unexplained eye issue, it made things so much harder. When we were finally seen, the consultant appeared flustered and disorganised. They did not seem confident in their approach or clear in their plan, which left both of us feeling uncertain and even more worried. 

We were then told to wait for a scan, but again there was no clear information on how long it would be, only that they were running late. We waited the rest of the morning without updates or any sense of when we might be seen. It was exhausting, stressful, and completely avoidable. What should have been a short follow-up turned into an entire morning of sitting around, unsure what was happening next.

It also cost me an excessive amount in parking, triple what it should have been. I lost several hours from work, which is incredibly frustrating, especially as I work for NHS Lothian myself. I have always been a strong advocate for the NHS and proud to be part of it, but I am sad to say this kind of experience seems to be becoming far too common.

This was not just about being behind schedule. It was about the complete lack of communication, coordination, and consideration for the patient experience. It was about a young girl being left in limbo when she needed support and reassurance. It was about a system that, in that moment, felt like it had forgotten the people at the heart of it.

The contrast between the two experiences, was stark. Our wonderful Dr in A&E and the emergency care team demonstrated what compassionate, person-centred, high-quality care looks like. They listened, they explained, and they made a frightening situation feel safe. The Eye Pavilion visit felt chaotic, dismissive, and fragmented at a time when clarity and confidence were crucial.

I share this not to place blame on individuals, but because this needs to be addressed. Parents should not have to chase answers or sit in silence for hours with worried children. Staff should not be so overrun that it impacts the quality of care. Patients should not be left feeling forgotten.

I later found out the delay was due to my daughter’s scan referral form being filed in the wrong patient’s notes. Had I not followed up, we would have been left waiting indefinitely. It took five members of staff to locate the form. While the admin team were extremely helpful, the error occurred when someone mistakenly placed it in the wrong file.

Others in the waiting room also expressed concern, commenting on how appalling it was that an 11-year-old girl was left to endure such a long and distressing wait.

I want to believe in the NHS as much as I always have. But we need to do better for the patients, for the staff, and for the families who trust us to care for them.