"I feel so depressed and distressed at the way I have been treated"

I often wonder that when Dante was writing his Inferno, what circle of hell he would envisage the Ophthalmology Department at St James' hospital, Leeds occupying. 

Where do I start? The appointment system is shambolic. I'm a regular user of the Department due to a multitude of serious eye problems yet I  have to chase follow up appointments. At the beginning of December 2024, I was promised a review appointment in four weeks in time (ie beginning of January 2025. Only after chasing it up at the end of February that I was told due to an administrative  oversight I had been overlooked. 

Similar thing happened in May 2025  - I was told I would be seen again in clinic in  2-3 months. Three months later, in August 2025, when I enquired at an Optometry  appointment,  it transpired that there wasn't  even one in the system. Though by some strange coincidence  I  mysteriously received one for the end of September ( some 4 and a half months later) just a couple of hours after the receptionist at multispecialty outpatients promised to follow it up on my behalf. How uncanny that an appointment suddenly materialises just like that!

If it was  yet another admin oversight fair enough but it would of been nice to have received an apology. But they seemingly can't even be bothered doing that. They also once expected me to go six weeks between reviews with no sight in one eye and very little in another which made me completely dependent on others for simple daily tasks of living. 

I have also received appointments that I didn't actually need - one for laser treatment for retinopathy which should of been cancelled as I had been listed  for more invasive treatment - a vitrectomy with laser treatment as due to delays the damage to my retina had gone past that point where it could be treated by laser alone. I only found out when I turned up for the appointment and the ophthalmologist asked why I was there. Depriving someone in genuine need of that appointment.  

On the subject of chaotic admin, I once waited in eye casualty for over four hours despite the clinic being empty as they had forgotten I was there. I was accused of not following the proper procedure and that's why they didn't know I was there. I had followed proper procedure - I had  gone through the initial sight tests and screening but for some reason the ophthalmologist didn't know I was there.

And despite asking for proper appointment letters in November 2024 as I can't read the texts they send very well, I'm still receiving texts! 

There is no continuity of care - you never see the same ophthalmologist twice. Their attitude is generally dismissive and patronising and they make you feel like you are on a conveyer belt and they just want you out of their consulting room as quickly as possible. They don't bother to listen to your concerns and how your sight loss is affecting you on a daily basis. Yes I can read the larger letters on the sight chart in clinic but on some days  depending on the light conditions I can't even see the car that is fast approaching me as I cross the road. 

They saved their best for an urgent appointment following my stroke in June 2025.  Various health professionals on the stroke ward  at LGI noticed problems with my eyes so I was referred to ophthalmology. Patient transport left me in reception just before 12 noon and despite being deemed a priority, I had to wait hours to see an ophthalmologist. Only to be told, in a quite a dismissive manner, that, apart from some double vision,  my stroke couldn't possibly have caused the problems I was having and the relative afferent pupillary defect I had developed was due to the various surgical procedures I  had previously.  

If that is the case, I would like to ask that ophthalmologist why my right pupil is now permanently twice the size that it was prior to my stroke and I have real problems in seeing in too light or too dark conditions? And why the optician I saw just one week before my stroke  didn't pick this up? Sadly I was not aware of how odd my pupil looked at the time of the appointment as there wasn't any mirrors in the bathrooms or toilets on the ward.

After my appointment I returned  to the reception area and asked one of the receptionists if my patient transport back to LGI was on its way. They looked at me blankly and asked if I had ordered a taxi. I said no and that I had come in an ambulance. They told me to sit down and wait. And I waited and waited. I waited long after both receptionists had put on their coats and left for the evening. When I asked a member of the nursing team what was happening, it turned out nothing has been arranged and I had seemingly once again been forgotten about.

It was well after 6 o'clock before I finally got back to my hospital bed and because I had missed both my lunch and evening meal,and as a diabetic, I was in the throes of of a hypoglycemic attack. This can be really dangerous for someone who has just had a stroke because it can worsen brain damage, increase the risk of a second stroke, mimic stroke symptoms, and complicate treatment. Yet staff at the eye clinic really seemed to have no concern for my holistic needs. 

Its a sad indictment of the care I have received that my son has said to me - if I ever win the lottery I'll pay for you to have private treatment. It shouldn't have to be like that and I just feel so depressed and distressed at the way I have been treated. Am I just unlucky, or are all patients treated like this?