I've just found out they have cancelled my planned surgery for the second time. This time not even bothering to give me an alternative date
I have angle closure glaucoma. Because of COVID, it was already advanced in my right eye when diagnosed. I was on max drop (x3) and oral diamox, it having been a challenge to bring my pressures down. I recently had a severe reaction to one or more of the drops and then reacted to drops prescribed to treat the inflammation. As a consequence the drops were all stopped. My IOP's started to creep back up to 20 & 30. I agreed to the diamox being increased, knowing it was short term, with a date for surgery early June. Alongside this I have cataracts in both eyes and my vision has become mega blurry as a consequence. Given the risk factors I was told I was on the priority list for surgery. Hovever I now face another long WAIT. In the meantime I am relying on medication, which I've already been taking for longer than is advised, as it causes kidney and liver damage, with pressures higher than is safe, so there is a very real risk of further sight loss. I'm at a loss about what I can do. I can't afford to go private, as funding my daughters divorce from an abusivive husband wiped out our savings! Any advice welcome
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Efabear
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I’m so sorry to hear this, seems like you really are caught in a trap with surgery the best option. I guess all you can do is try and keep on at the hospital to give you a new date as soon as possible. Hope you get some good news soon.
Hi Efabear! So so sorry to hear your op has been cancelled. I don’t have any immediate advice except to contact your consultants secretary, your GP and maybe your MP and state your case strongly. I’d write, email and call in the hope one route will get through. Can you say who your health authority is? I’m in Somerset. I’ve recently had a trab on my right eye kicked down the road and the promised SLT on my better left eye I still have no date for. I was told there’s a 3 mth wait at my hospital for SLT. I’ve reached my 3 months wait deadline today and still not heard a dickie bird. I’ve left messages with the consultant’s secretary which has helped previously, but this time it’s a new secretary and they are not responding. It’s grim!It does seem the NHS are now no longer able to cope. I don’t blame the staff. But I am angry. It’s not just the delays in essential treatment it’s the lack of communication from the NHS that is the problem. Being in the dark -quite literally for some of us with actual advancing vision loss - is not good for our mental health either.
I’m sorry I can’t suggest something more constructive. I just wanted to let you know that I feel your frustration; I feel your anxiety and that you’re not alone in this. 👍🏻
Thank you and sorry you are having the same problem. I started this journey determined to face it all positively but its felt like they were playing Russian roulette with my health for a while, with a choice between kidney damage or visual loss. But now I feel I'm being fed to the wolves. I've got no hope for a solution if I'm honest, although I will try and will definitely write to my MP, who is pretty useless, but just maybe?! I worked in the NHS for 40 years. It was pretty broken when I left and has definitely now collapsed. Truth is its costing more not to do surgery than to do it (Its a rare week I don't end up at eye casualty) and will definitely cost more if we lose sight and need more help, so its pretty short sighted plan. Thanks again and fingers crossed for your surgery soon x
Dear Efabear, I am very sorry to hear about the cancellation of your eye surgery. I hope it can be rescheduled as soon as possible. Please keep in touch with your consultant. With best wishes.
I feel so very sorry for you, what a dreadful predicament. I’ve had similar problems but either the secretary has sorted my situation or PALS. Good luck, sending you a big hug.
Thank you. I've stayed upbeat through the ups and downs of this journey but what with the allergic reaction (which was horrendous) and this it's completely flawed me. I was a mental health nurse and we were held accountable for having clear risk assessments in place. It is one of the markers for which services are measures. However, it is clearly not the case, outside of mental health services, that there is an expectation risks need to be addressed.
Thank you. I spoke to admissions and apparently they cancelled as my consultant is away. She reluctantly gave me another date (in late June), as I was so upset, but I'm not holding my breath as there is a very real risk of this being cancelled too. Might even make plans, that are easy to cancel, to soften the blow should it happen.
The state of the NHS is a national scandal. My heart goes out to you. I am in the fortunate position of being able to afford some private treatment. I honestly dread to think what state my eyes would be in now if I hadn't had this. I would definitely contact your MP. I wonder if Glaucoma UK could get some sort of public platform in the media to highlight the issues those with glaucoma are facing at the moment? It seems that cancer is getting a lot of air time at the moment but it's not the only condition that ruins lives!
Oh, that's terrible! I feel for you, just a few days of diamox and I am a wreck!I think a formal complaint is appropriate. I would send an email to the consultant/department concerned if you can find the address (this worked for me last year).
Failing that write to PALS. You could also try asking your GP to send you for a second opinion although of course that's not going to be a quick solution.
I really hate the way appointments are cancelled without the courtesy of a reason or an alternative.
So very sorry to hear of yet another cancellation for your op.
How about contacting your local media ?
The BBC daily,local news programmes are often interested in publicizing these problems. You can find their e mails on Google.
Otherwise newspapers my be interested. A BBC radio 4 programme called IN TOUCH is especially for people with sight problems, also easily contacted on Google.
I find if I can do something by speaking to these people, then it does help me feel better and may even help others.
I’m sorry your surgery has been delayed. I was in a similar situation with a MIGS cancelled due to Covid, and was so concerned I managed to scrape together enough for a private consultation. They advised they had a long waiting list and it would be quicker to remain on the NHS waiting list!
Thankfully I have now had my surgery so hopefully you shouldn’t have to wait too much longer, especially as you are a priority, as was I. I’m sure the surgery will be successful and I wish you all the best ❤️
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