"When things do go wrong, shouldn't the well being of the patient be paramount?"

About: Rotherham Hospital / General surgery Rotherham Hospital / Ophthalmology

(as the patient),

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.

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Responses

Response from Kerry Hollingworth, Corporate Affairs Officer, The Rotherham NHS Foundation Trust

Dear living in hope, Thank you for contacting us with your comments via Patient Opinion. We are most concerned to hear of the difficulties that you have had, and are still having since your operation. If you are not in touch with them already, I would be very grateful if you would contact our Patient Services Team on telephone 01709 424461 or at complaints@rothgen.nhs.uk, to allow us to undertake a thorough investigation of your experience and try to help resolve your concerns and difficulties. We are sorry to hear of your bad experience and would like to look into this further.

With best wishes,

Kerry

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Update posted by living in hope (the patient)

I have noticed I've had a response to my first letter. The response says that I should contact patient services. I have been in contact with the person who wrote the response. I have explained that patient services was the first place I went to when I knew something wasn't right about my care at the hospital. I raised my concerns at the time with patient services and told them that my concerns need to be dealt with before I can move forward regarding my second eye operation. All of this took place at the beginning of May. I found out a couple of weeks ago from patient services that they cannot look into my concerns until I put in a formal letter of complaint. I have done this and I received a reply acknowledging the complaint letter a couple of days ago. The letter states they will look into my concerns and reply by the last week of August. The questions I would like to ask patient services is why didn't they look into my concerns at the start? Why say two months down the line I need to put a letter for them to look into the matter? Why have they wasted two months and do they understand what I am going through? It will be five months when I get an answer in August since I had my first eye operated on.

I would like to mention I wrote to yourself and other directors and executives at the hospital about my ongoing experiences I am having at the Rotherham General Hospital. To this date, I have not received a single reply to my letters but for some reason unknown to me, my MP (Sarah Champion) who has written four letters on my behalf has received swift replies to all her letters. Why is this? Do people like me not matter? Are we just a statistic? Would I have received replies to my letters if I had MP at the end of my name?

For people like me (and I'm sure many other people would agree) when we write letters to people like yourself, it's because we feel in despair and our other avenues have been exhausted. What really hurts me is that if I had received a single letter of acknowledgement, I would have felt that there is another human being who can relate to my experiences. I have gone through those experiences and I am currently still going through them at this moment in time.

Since my last letter, I would like to tell you what has happened. I finally managed to arrange a meeting with someone at the hospital. This meeting only came about after I had to make numerous calls to the hospital. I was told that a matron was investigating the matter. I telephoned her to ask what had been done. She said that my consultant was not available due to some circumstances and another doctor would meet me to discuss my treatment. The appointment could only be arranged in two and a half weeks time.

Finally the day of the appointment arrived. The appointment was in mid June 2013 at 5:00pm. I arrived twenty minutes early. I was sat in a waiting room. I was told the doctor was busy and would be late. The doctor finally arrived at 6:10pm which meant I had to wait two and a half weeks for my meeting and then wait 1 hr 10 mins to see someone. When the doctor turned up, I explained what had happened to me from my right eye being operated on and up to now.

The doctor told me he was only there to discuss what type of lenses were available to me. He also said he was not in a position to talk about my past care or any problems which may have occurred beforehand.

I told him my main reason for being there that day was to discuss my past care. I wanted to know why I was being given choices of different lenses now when I wasn't given any choices for my first eye.

Doctor said he could not talk about anything in the past and told me that I should discuss with the other doctor involved.

The doctor also told me that all the notes which they have about me belong to me and that I'm able to access them at any time. Then he passed the notes over to the Matron. While she was looking at the notes, she told me that she thought the hospital should learn from all this that the consent forms in the future ought to have the option of different kind of lenses being available to the patients. I told her I felt this was a good thing because I would not like anyone else to go through what I had been through. While she was going through the file, I noticed on a yellow paper that it said in big letters "yellow lenses needed." I asked what that letter was and I was told it had my eye measurements for my lens implants. These measurements were taken when I went in for my assessment before any operation had taken place. Was it intended to put in two yellow lenses from the start? Why has no one at the hospital mentioned this letter to me in which it is clearly stated that the yellow lenses are needed? So we come back to the same question about my treatment. Why was a clear question implanted in my right eye?

Response from Kerry Hollingworth, Corporate Affairs Officer, The Rotherham NHS Foundation Trust

Dear living in hope, thank you for your update posting on Patient Opinion. We are sorry that you remain dissatisfied with our response. Please contact the Patient Services team on telephone 01709 424461 or at complaints@rothgen.nhs.uk so that we can address your outstanding concerns.

With best wishes,

Kerry

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Response from Kerry Hollingworth, Corporate Affairs Officer, The Rotherham NHS Foundation Trust

Dear living in hope, thank you for your patience and cooperation in the time that we have been thoroughly investigating your experience of care at the Trust. We are pleased that we have had the opportunity to meet with you and have made a commitment to resolve all of your concerns.

With best wishes,

Kerry

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