There was a delay in hearing the results of my last eye scan and I was becoming anxious. Then all of a sudden I was told by the hospital that I had been approved for the new drug Eylea to replace the Lucentis injections I have had until now. Eylea was recently passed by NICE(National Institute for Health and Care Excellence) for use on the National Health Service. I was given an immediate appointment and some basic information by the Administrator.
So, when in doubt, I contacted the Macular Society on its excellent Helpline (0300 3030 111) and was given the most up to date and reassuring advice. For more information refer to http://www.macularsociety.org/How-we-help/About-us/Newsroom/News-stories/nice-approves-eylea. Briefly, this was, that after the first three monthly injections of Eylea, it could be that future injections will be every two months. This will be a great improvement for both patients and NHS hospitals currently coping with the monthly injections of Lucentis. There is even some evidence of eyesight improvement in certain patients.
At the hospital the procedure is exactly the same. Initially, the pre-op nurse explained that I had been selected for this treatment because I have had more than 20 injections in my right eye and have lost all useful sight in my left eye. The doctor asked me to sign a consent form to receive the treatment. This, of course, was a few pages of exceptionally small print, and he even had to show me the tiny space in which to sign. He warned me of the risks, a 1 in 1,000 loss of sight and infection) and in spite of my misgivings at signing a form I had not read, I signed, grateful for this opportunity to prolong my sight. The doctor was enthusiastic and reassuring about this new treatment and I do trust him. And so far so good.
But.. this raises the general question of how practical it is for someone with VI to read and sign any agreement. Hardly reasonable to ask for it to be read out. I was given a large print pamphlet and CD to bring home but it doesn’t cover everything. How does this leave me if things go wrong?
We all appreciate that the NHS is under enormous pressure and provides a superb service. Also the hospital was acting swiftly to implement this new treatment. So am I quibbling over this detail? I suppose it also applies to people with literacy and language problems who are not VI. Have any of you experienced the signing of forms you cannot see in a medical or other context and what did you do?
Not much news because I’ve been housebound with a virus and next door’s cat and the wonderful The Enchanted April by Elizabeth von Arnim (first published 1922 ) read by Nadia May. The story of Rose, Charlotte, Lady Caroline and Mrs Fisher who barely know each other and leave their lives in London for the month of April in an enchanted castle in Italy. Rose and Charlotte leave behind unsatisfactory husbands. I love Charlottes’s disapproving remark to her husband that he writes books that she would not want God to read. It all ends happily with compromise, romance and love. Just as it should be.