I am looking for advice really. My husband was referred by the optician to the Eye Infirmary . He has an appointment in four days. He was told it was wet AMD - his right eye had gone too far for treatment but his left could be treated ( he still has good sight in this eye . Husband is long sighted anyway). He left with the belief that he would begetting a series of 4 injections and the eye infirmary made a second appointment ( on an emergency treatment red slip from the ophthalmologist, which said Lucian(?) injections and was for an urgent referral) .
We went back but instead of getting the injection he was taken off for more tests. At the end of this he was just sent away. He didnt get to see the consultant again, it was just nurses. Nothing more was said. He has just been left high and dry in the air on this.
That was a week ago. We have heard nothing from them at all.
He is worried and even saying if he loses his sight in this good eye he will kill himself! I am woried. I would like to know if we have a diagnosis or not and if he is going to be treated or not or ..... well what?
Clearly the hospital have forgotten him now. As I understand it, treatment for wet AMD has to be quick otherwise its too late.
What can I do? Can I get another opinion? if so how? Should I get husband to ring hospital and find out whats going on? is that allowed?
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abys
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Well I think what would be considered "allowed" doesn't really matter in this situation I mean better safe than sorry right? But seriously you could call an ophthalmologist as they can perform surgical procedures on your husband's eyes. I think you need to do what ever it is for this to be fixed immediately
Contact the eye clinic and explain what happened. If the consultant advised Injections they need to start asap and could save his sight. Please don't delay.
I was tentatively diagnosed in January. But was possible it could have been a self resolving condition versus the macular degeneration. They watched me and did scans 2 more times. On March 25, decided it was the wet AMD. 2 days later, emergency start of injections. I had 2nd one on April 25. I suggest you call the faculty and clarify. It may be a scheduling mistake.
Definately give them a call. Sounds like you possibly attended a virtual clinic. If your husband has worsening of vision you have every right to attend eye casualty and go from there.
I made the mistake of not getting past the automatic telephone answering service and now have a left eye beyond treatment – if someone asks you if you know about a condition, do you suspect that they think you probably have it when they've only spoken about something slightly different?
And over £10,000,000,000 on a failed computer system and they can't send you jpegs of your tests or even deal with email at all (and, yes, maybe I do realize that some people would be forever bombarding them with questions).
Time is of the essence.Contact the consultant’s secretary without delay. Explain what he told your husband about the intention to administer Lucentis injections. At the very least you need a clear reason why this had not been the case and ask for an urgent referral.Obviously, I do not know your clinic but I am aware that some hospitals have “roving” teams of nurses who carry out fairly routine tests to provide vital background detail for the doctors but are not specialised in the the eye conditions themselves.
Google the consultant’s name and you will find the necessary phone and email details.
Contact the Macular Society helpline 0300 3030 111. They have helped me on numerous occasions when I've hit a complete brick wall over getting appointments on time for injections. They will give you support and advice as to what treatment guidelines you should have been given, and they can approach Consultants on your behalf if you wish. They have an enormous amount of (easy to read) literature and information. Good luck.
Ring and ask to speak to the clinic manager if consultant secretary unavailable. If you get nowhere contact PALS ( details will be on hospital website) and complain. Go to a&e if sight worsens ( they have an on call opthalmologist).
You must contact your husband's eye unit immediately to find out what is going on. If he has got wet AMD and he is within the guidelines for treatment, then speed of treatment is of the essence.
Please see our 'essential care guide for wet AMD';
If you are encountering problems in getting follow up appointments and would like a chat with the Macular Society helpline, please call us on 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).
Thank you all for your replies. I have taken heed of all your comments and I called the Eye Infirmary. They gave me a number for a AMD coordinator but when I called that the number was engaged or on an answer phone. I left a message but have no reply. That was two days ago. I am trying again today.
Finding some to deal with this is a problem. I have been passed around like a parcel and left in the sorting office.
Abys, don't be fobbed off. You need to get tough with them! Ring back and insist you speak to the clinic manager. If you can't face doing it contact PALS and ask them to do it for you. Explain the urgency - quote what the Mac Soc have said. Or ring Mac Soc as they've suggested. Don't waste any more time.
I will let you know the state of play ( if this is a game?) as of five minutes ago. No one called me back from the eye infirmary from two days ago so I called again and got a person on the phone. I explained the situation and was told that the surgeon was looking at the fleuricine (?) photographs and when he had done so he would send a letter.
I pointed out that I thought two weeks ( nearly three now) was plenty of time for said surgeon to look at some pictures and I was concerned because husband had been sent home without any information or knowledge or even a proper diagnosis. We only knew what the optician had said and he had been referred as an emergency. Husband had two lots of tests and no feedback from either as yet and that did not seem right.
She then put me on hold and said she would contact surgeons secretary. A couple of minutes later ( no longer) she got back and said that my husband would be contacted in three months time because his eyesight was above that recommended for treatment by NIACE and the treatment was very expensive.
I pointed out that I knew from the macular society that the rules had moved recently and I asked her what the level had to be and what level he was at - she got a bit shirty and said she was sure the surgeon knew about any changes.
I said, the surgeon may do, I dont know since he has not spoken to my husband and he nor I have no idea what level he is at or what the levels should be and it didnt not sound right to me that he was not being given full information about his condition and treatment. She then said said she could not answer concerning the level of vision required/that husband had or about treatment levels on the phone and that and he had to go to his GP. I pointed out we had neither seen nor heard from his GP for over 20 years, so that was not useful.
I said that didnt sound right to me ( I was trying to be polite honest) given as his one eye had already deteriorated below any treatment and this was the only eye he had left that he had to deteriorate further before they would treat it - in fact it sounded as if they were going to let him go blind to put it bluntly.
I wanted to know what the levels were and what his level was . We needed information. He had neither received a proper diagnosis nor a discharge properly or any information at all from anyone. Information was essential. She tried again to say I didnt need that but I did insist that it did not seem correct and that he was entitled to have an explanation about his situation and any treatment ( or none) She said she would get someone else to call me - so another fob off?
If I get nothing this time, I shall be writing a letter of complaint I think. I didnt like it. More than that I didnt like the way he was just sent home without any information and no one got in touch and they just left it in mid air.
My husband may not be a "professional man" in a suit and boots but his eyes are as important as anyones. he is a plumber, he may be semi retired but why should that make a difference? He isnt as articulate as I am or as pushy and thats probably why they sent him home without any explanation.
Her statement treatment was expensive made me angry! It sounds as if this is NHS rationing in some form. Both my husband and I have paid for the NHs all our lives and taken nothing ( absolutely nothing ) from it.
I suppose she thinks we need to go private does she?
Do we need to go private? Is that it? Private or go blind?
On the back of a letter we have for his appointment it says
"Your waiting time starts as soon as we have a referral from your optician, GP dentist etc......
and it ends when
a) we have agreed with you no treatment is necessary .... where was the agreement? They didn't say anything)
b) surgery or treatment is given .... well they haven't and they are not apparently
c) Medication is prescribed ..... again , not even a mention of possible diet or any of the other things that I have read from the macular society about how to check if your eyesight is getting worse etc. - that should have been told to him surely?
d) we arrange for you to have a medical device designed to help with your condition.
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