Macular Society
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Update on my 92 year old mum

Sorry it has taken me so long to tell all of you who were so kind to give me support some weeks ago now following an awful experience for my mum following an injection. It took until the day of her next injection to get any response from the hospital. I had no reply to my letter to the consultant before going on holiday and a call to his secretary meant just leaving a message on the answering machine before going away.

What a difference when we turned up at the hospital! I had tried several times without success to call the doctor who left a message on my answering machine and could not even get a reply when I was in the building, but when we announced our presence to a sister on duty, everything changed, even though the waiting room was full to bursting.

While mum was finishing her visual fields tests the doctor arrived and was waiting behind us to scoop us away to a private room to discuss my letter and, most importantly, to apologise for the horrendous treatment mum received last time and promise it would never happen again. My letter was read in full to all staff during a training session and the exemplary reactions of the senior nurse practitioner who saved the day is what they will all be striving for in the future.

The doctor who did the injection has been recommended for further training for dealing with elderly and vulnerable patients and the nurse was nowhere to be seen. I was allowed to accompany mum while she had the injection and merely had to wear a face mask. This was no problem for me and I was told I should never have been refused to stay with her. Mum was given the drops to reduce the pressure in her eye both before and after the procedure, and given extra anaesthetic.

Sadly, even with her short term memory problems, she was extremely nervous about the procedure and we have a long way to go to rebuild her confidence and get her back to the days when she used to say "It's OK, it doesn't hurt at all." It was not easy for her but the medical team this time could not have been more kind or professional – an amazing contrast to last time and hopefully what we, and others, will always experience from now on. I seriously worry for all those souls out there who suffer in silence and have no-one to speak up for them.

It was entirely accepted that more needs to be done to reduce the waiting times at the hospital appointments and the good news is that the treatment may become available in mobile units travelling around the county, which will reduce long journey times for patients.

So thank you again for giving me the courage to stand up for mum and for your support. My advice to anyone who feels they need more information, or advice, or to praise staff, or to complain is to go ahead and state your case. I have specifically suggested they start to follow this community and learn more about how the treatment affects people in different parts of the country.

Special thanks to the Macular Society for their constant monitoring of this site and the guidance they give to patients, their loved ones, and the medical teams looking for ways to improve the treatment for wet AMD. Good to see from the recent TV news that a real cure might be on it's way.

1 Reply

Hi rooky17, so very pleased for you and your dear mum !

Well done you X

It is scary to complain, knowing you have to return for treatment, but it was the best thing I did and things have been a million times better since.

The nervousness does take a while to go, I have found I am ok if I see someone I've seen before as the trust is there now but if I get someone new the old fear comes flooding back. I just make sure I tell them why and it so far has turned out fine and they are very sympathetic and reassuring. That has actually been key - giving myself permission to admit my fears out loud and not worry if they think I am pathetic!

Good luck to your mum for the future, yes the stem cell research looks good for amd (I'm going to ask my clinic if it has promise for the rest of us with other macular probs too). X


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