"36 years old macular issues, no diagnoses still..."
About: Royal Lancaster Infirmary Royal Lancaster Infirmary Lancaster LA1 4RP
Posted by deeply worried
I suffered extreme vision loss in my right eye and went to A and E on the 20th Jan this year. They confirmed no risk to my life etc and sent me home. The ophthalmology department rang me the following day and asked me to attend that evening. The consultant on duty examined my eye for about 3 minutes and advised it was probably CSR and said to come back in 2 weeks. No help or advice was offered in how to deal with this vision loss despite the fact that I am basically relying on 1eye. My appointment came through for 6th Feb, which I attended only to be seen by an eye doctor and not an eye consultant so I had to then go back again to see a consultant on the 8th Feb. My consultant carried out an Oct scan and found a lump and said she was concerned due to my age and asked for an urgent fluoresce in angiography to be performed the following week, she stressed this 3 times to the nurse during my visit, I was also advised to call and ask the consultants secretary to put the results in front of her so that I didn't, blend with the rest of the pile. I was sent home to wait for an appointment. It came through for the 19th Feb some 2 weeks later. I rang to check if this was OK and was told there was other urgent cases before me and I had to wait. Fair enough about taking turns but what concerns me is that there are quite a few consultants there and I seriously doubt someone sits and looks at all the referalls and puts them in order of urgency. So here I am sat in a system of inflexibility and not once have I had any reassurance that by being left to wait this long is not contributing to my eyes worsening state. As there is no confirmed diagnosis yet how can they?
So I went for the FA. I was told that I have now been referred to another consultant who specialises in macular issues. I was told that I should call back in 2 weeks if I don't hear anything. 2 weeks for crying out loud. All the while I'm struggling to do my job, I am having sleepless nights, heart palpitations due to anxiety and my case has gone from urgent, put the file in front of me to call in 2 weeks if I haven't heard anything. Its been 5 weeks. My vision changes daily, I look in the mirror and close my good eye and I can't see my face, or most of my body, if I raise my hands in the air I can only just make out part of my hand and the view is distorted. How on earth can this not be more urgent than five weeks? I have absolutely no complaint with any of the staff there. All of them have been magic. What I have an issue with is the waiting times and the lack of explanation, the lack of empathy because I am having to wait so long. I guess they have heard it all before. I am just a number and so what if your blind in one eye.....at least you can see, some people don't have that much...and bye the way this is the NHS and its free so what do you expect. Well I expect better. I could go on but you don't have space.