"When things do go wrong, shouldn't the well being of the patient be paramount?"
Posted by living in hope (as ),
I am writing this with the help of my 13 year old son as I am unable to type myself. You will understand why after reading more of this. I have just finished work an hour ago and it is 10pm. I will start from the beginning and explain why I am in this situation.
Back in February this year I had an assessment for a cataract operation. At the assessment, the doctor knew I had an condition called retinis pigmentosa which means I am losing my all round vision, the. Doctor said I would be having my right eye operated on and then soon after my left eye. At no point at this meeting was I told or given any options about the types of lenses which were to be implanted.
In late March my right eye was operated on. Neither before nor after the operation was I told what type of lens was implanted into my right eye. My left eye was due to to be operated on at the beginning of May before the Bank Holiday. However a couple of days before the operation, the surgeon's secretary telephoned me to inform me that the operation has been cancelled due to the fact a special yellow lens (blue blocker) had not arrived. This meant the operation could not go ahead. To this I asked a number of questions one being what lens had the surgeon put in my right eye? I was told by the secretary she did not know and I was told the surgeon would phone me back with more detail. When the surgeon telephoned me he said "do not cancel the appointment and just go ahead and put a clear lens into your eye". To this I replied firstly it is the hospital who had cancelled the surgery. I also asked him what is a blue blocker of lens. He replied by saying "You are asking too many questions and should come in and see me the following day".
The following day I met the doctor at his clinic. I asked him about the blue blocker lenses, what are the benefits of the lenses and why was the left eye going to have a blue blocker lens implanted when the right eye had a clear lens in? I also asked why did the first surgeon who operated on my right eye put in a clear lens? Was the first surgeon aware that I had retina pigmentosa? If the yellow blue blocker lenses were not available for the right eye, why did the operation go a head? Why was it not cancelled until the correct lenses were ready? To this and many more questions, the doctor replied "you have a choice. I can take out the clear lens and put in two yellow blue blocker lenses or I can put in two clear lenses." I told him why was I not told this when I came in for my first assessment. At that stage I was not given any options whatsoever but know I had asked some questions. It was all down to me to decide what should happen to my eyes.
After the meeting with the doctor, I was left more confused. I believe it is the doctors and the eye specialist duty the point and guide me in the right direction. However since I have asked some questions, I have found the whole department have either put up a brick wall or have sat on the fence and have said to me on the telephone and in writing that I need to decide which way to go with the implants. Why was I not told about this at the start and why only now?
Next week it will be 6 weeks since my right eye was operated on. I have been trying to get some information about the blue blocker lenses from the hospital but they don't seem the very helpful at all. So I have been trying all avenues like the RNIB, RP fighting blindness and Moorfields Eye Hospital in London. These are just a few places I have tried the gather some information.
I work full time for an engineering firm. Since the operation six weeks ago, I am finding it extremely difficult at work. With one eye operated on, I can't see anything up close but I need my glasses since my left eye still requires glasses. My vision is everywhere. This is having such an impact not just at work but on my home life as well. My children are seeing how much this is affecting me. I have always worked in my life but when I wanted the NHS, I feel if was not there for me. As I am writing this, there seems no light at the end of the tunnel.
I hope when you are reading this that you put yourself in my situation for just a moment and try to see what I am going through every minute of the day. From the minute I open my eyes in the morning to the last thing at night, it's like a living nightmare that I can't see an end to.
I believe we all need the help from the doctors and surgeons at some stage of our lives, even they do and we trust them with our lives when we are on the operating table. So when when things do go wrong, shouldn't the well being of the patient be paramount? I hope this reaches the correct person as I am sure you are happy to hear about feedback from people like me who have had a bad experience and are still having. I have also been to my MP Sarah Champion to explain my situation and she is looking into this matter for me.