Following on from my appointment on Friday, this morning I received my appointment letter for 2 months time - injection only. No hospital visit for two months!!
On the ball: Following on from my... - Macular Society
On the ball
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Bobbie915
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37 Replies
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How long would you normally have waited Bobbie?
Hi Springcross, In normal times I make my next appointment before leaving the hospital and I get the confirmation letter a couple of days later. I go every month but only have injection every other month so for the time being, it will be every two months, with no check-ups. The reception desk not being maned for appointments at the moment.
Hi Bobbie. I usually go straight home after my injection and get an appointment letter through within about five to seven days. I rang the Liaison Officer this morning and explained about my next appointment after my injection on 2 April won't be for another eight weeks and she told me that the consultants have had a meeting and discussed what action to take. They considered all those that are urgent cases will be given priority. They then instructed the co-ordinators to contact all patients and inform them of their next appointments. I explained to her my fear of leakage due to the time involved and she has told me that there is really nothing she can do. What she did say was that when I have my injection on Thursday, to have a word with the nurse and the person who is doing the injection to see if they can advise me on what to do. She also said there will be a mediator on the floor too so if I could manage to see that person, I could also ask him/her. In other words Bobbie, I am no further on. If I get leakage after five weeks or thereabouts, I don't understand why that is not classed as urgent. I also asked her what happens if I get more damage because of the length of time without the injection, but she couldn't answer that! Hey Ho.
I understand your concern. As I have for the past 2 years, only had an injection every other visit it is reasonable that they are staying with that. My other eye doesn't get treated any longer.
With them not doing scans at the moment, it's very difficult to know who really needs injections. I thought they would have considered the history in making their decisions. on timing. Good luck with the appointment - mention your concerns, you never know, you could get lucky.
Hi Bobbie. I had my injection this morning and all seemed to go well. Whilst in the waiting room who should appear but the person who normally does my injections at Weston (he did not do today's). I told him I was very worried about having to wait eight weeks after being told that the next one would be five weeks and about it being because of the leakage. He said that everything has now changed and it now is a minimum of eight weeks and that only emergency patients will be seen. I also spoke to the doctor who did my injection and she said the same. She also said that they don't even know if it will be minimum of eight weeks and that it could possibly be longer as depending on sickness with the virus they may not have the nurses or doctors to attend as they don't know how it's all going to pan out. She did say that if I have any pain, vision problems etc to ring the emergency number and they will decide if its urgent enough to warrant being seen. I have read that leaking behind the macula is a medical emergency and urgent treatment is needed. I know it can't be helped because of the situation but I'm no further forward. I just hope I don't get any humps or wavy lines before I have my next injection (God knows when that might be!). Hope you are well. xx
Thanks for the update. So pleased to hear all went well.
Is that Weston in Somerset? Loverly day here in Shepton Mallet. The icing on the top was to get a delivery slot at Tesco for tomorrow! Xx
Weston -s-Mare.
My guess was right! xx
in reply to springcross
Hi springcross, my friend had her ozurdex appt cancelled but was given an emergency number if things get bad.........do you have similar?
Back when I was having antivegf inj there were a few times I had to ring as oedema had returned with a vengeance and they always fitted me in as an emergency.
Seems to me they need to do the same now. They may be banking on any leakage you might get as being nil or slight and therefore lower down the relative priority list but if its enough to affect your vision to the extent that you can tell then i would say you have every right to call in and your position on the list be reassessed .
I mean, what do they do with new folk? They surely can't refuse to see emergency cases.
Of course, ringing in may not get you anywhere but it's an option.
Best of luck with everything x
Koalajane in reply to
My opthamologist said he wanted to see me in 4 weeks and when I got the appointment it was just over 5 weeks. Being happy to get an appointment at all I left it. Yesterday I got a letter from the eye clinic which I opened with dread thinking it may have been cancelled completely. But no the appointment was rescheduled to a week earlier!
I sometimes get this but it's usually that I've been told six weeks but get given eight (not just on this occasion) and I have to ring and get it changed. I remember many months ago seeing a different opthalmologist and being told that I was OK to go for ten weeks but when I went back after the ten weeks, I was told by my usual opthalmologist that I shouldn't have been given that long because the fluid had returned and there was quite a lot! I had to revert to four weeks then also.
That's great Koalajane. x
springcross in reply to
Hi eyesright. The only emergency number I have is the one given on the day of injection and that is only for two days after. Whilst I understand completely why, what I was trying to get through to the Liaison Officer is if they are not doing scans, how do they know that there is no leakage. I had an appointment two days before Christmas when I was told that the scans were fine, no problems then six weeks later I was told that there was fluid there again (I knew because I had the humps - no joke intended - for about two weeks prior to appointment) and my weeks were reduced from six to four. I am fortunate in one way because I get humps on straight lines if there is fluid but that is not always the case. I have permanent damage because of the length of time involved in diagnosis (my fault entirely) so I really don't want any more to occur and I am trying to avoid that. I may ring the LO back today and ask if there is an emergency number. Thank you for responding and for your advice. x
springcross in reply to
Hi eyesright. I rang the LO and she has given me the A & E emergency number and times.
in reply to springcross
Make sure you ring too if you need it! X
springcross in reply to
I most certainly will. x
Hi Bobbie. It is six weeks since my last injection and I was due to see consultant on Thursday for eye scan. This has been cancelled and after I phoned hospital I now have a telephone consultation at the same time. I don’t see how they can assess without a scan. To date have no appointment for injection. I guess we are all worried and not seeing many options. It is scary when you live alone and have no family near. So sharing on this chat room is a real help. Thanks guys And hang on in there.
Absolutely, Shimano, it is certainly a worrying time. Telephone consultations can work for some things, but not everything. Some people have symptoms warning of fluid but it doesn't seem to work for me. Lines on the Amsler grid are always wavy. A few years ago, after 5 months of no injections, I went from good sight in both eyes to loosing overnight, central vision in one and the other badly damaged. No warning.
With the current virus issues , there have been many changes to the normal routine with hospitals and GPs which I'm sure will affect a lot of people.
We also, don't have any family close to where we live but we do have very helpful neighbours, and each other - both of us with different issues!
I hope you are as fortunate with neighbours, but having someone to chat to is not so easy.
Just had telephone consultation. Your post was helpful in deciding to go for the injection. Told no need for me to take precautions myself so assume hospital are on the ball with this. My last, 6th, injection did not have the awful after effects of previous five. However, consultant says nothing had changed re injection or iodine. I just don’t understand it. Fingers crossed I’ll just have to suffer the pain of the injection and not the 24 hours of agony afterwards. This site has been really helpful to me but don’t really have much of a clue how to use it. Come across stuff posted years ago. Should I be able to follow a thread or is it just pick and mix what you come across. My thanks.
Good luck with the injection. You could ask for your eye to be washed out to remove any remaining iodine.
Because of my poor sight, I do have difficulties in finding my way around various sites - some are more obvious than others. One thing you can do on this site is to click on the icon of a person and you can see all the posts they have made. You can often also see which country they live in. Just a little into you might be interested in!!
Some great people on here, caring and helpful. Don't know what I would have done without them. xx
Best to start a new thread if you can’t find answers from old posts!
Hi everyone,
I have been left to go blind(er) "on the waiting list". I am due an injection by the end of March. i.e. NOW. I am due a cataract op on my so called "good" eye by 13th. April. (This is Macclesfield Hospital East Cheshire H.T.). My re-op. assessment was 13th. Jan.
I KKNOW priority must be given to patients who are newly diagnosed and desperately need an injection immediately. And I am happy with this. I KNOW Social distancing is an absolute priority at this moment in time. BUT I wish I could get more info. about myself. When I rang for it I got sent on a merry go round of telephone nos. no-one knew anything. I called PALS, (Macc. PALS now call themselves Customer Services).
Altho' they said they'd get back to me they didn't. But when I emailed them, they did phone me with the "NEWS" . I as on "the waiting list for both procedures"
Whilst I realise everything has gone to pot with the Covid-19 crisis; I have reservations about passively sitting on the waiting list losing what sight I do have left. How should I self advocate? How should I prioritise myself? I'd be grateful for other people's advice and experiences who are in the same position as I am. I may WRITE. not email, a letter to the consultant himself.
Look forward to hearing from you all. Thanksxx
Ref. "Hundreds go blind while waiting for NHS treatment. Bby Laura Donnelly. Health Editor. Daily Telegraph (print version) date 7/6/18..
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I have found it can be useful to contact the consultants secretary. They can often give you an answer and also sort things out
I don't even know the name of my consultant! I have never been told it. I don't even know the name of my regular opthalmologist.
Do you have one of those letters that is a copy of the one sent to your GP? Ie. Mrs Springcross had an uncomplicated procedure blah blah. There would be a consultant’s name on that.
No, I didn't have one of those.
That’s odd. I thought they had to copy all patients in.
I take it you’ve looked on the back of your appointment letters as well as the front?
I only have appointment letters and there is no name on any of them.
Hi Springcross, I go to the Bath hospital. The first time I saw the consultants name was on a report written by one of the doctor I saw after a check up scan. These reports have been interesting but unfortunately rare. One of the doctors told me , they don’t do them often as they tend to worry people! Perhaps they do go mostly to your GP without sending the patient a copy. xx
Thanks for that Bobbie, I'll give the Medical Centre a ring on Monday and try to find out. xx
No wonder you are fed up fed13. Sounds a nightmare. Was once told by a medical person that those who shout loudest get the care. Goes against the grain in the current situation to cause a fuss but your situation sounds really crap. MPs are off just now. Any point contacting yours? Best of luck
Yes!! I shall try again, but last time I did got the recorded message "I am away from my desk". I hope she isn't ill., poor woman. I know she's always frantically busy. I will try again tho' Thanks!
xx
in reply to fed13
I feel for you fed13.
Not sure snail mail will be any use - I posted something today registered post and was told they can no longer guarantee when something will arrive.
Hopefully the mac soc are advocating for everyone via the Royal College and their links to hospitals . Best of luck to you x
Hi bobby. Like you I always have wavy lines. I had 2 months between last injections and when I had a scan was given Emergency appt two days later. Your experience was awful though. Keeping as much sight as possible depends on how well we are looked after. Someone else reported the dilemma of having private injections stopped and being unable to transfer onto the nhs. Treatment sometimes feels like going into a maze where you Keep arriving at dead ends. Patients often have researched and know a lot about their own condition. Unfortunately, things are so stretched no one seems to have time to listen. Good luck with your treatment everyone, and stay safe.
Dear All, Did give my v. young v new (Tory) MP a file detailing my struggle to get NHS treatment in time. This was months ago before the present lockdown. Originally, nearly 3 years ago when I couldn't get NHS treatmentt after being forced to go private for first injection, I got help from our then (excellent)Llabour MP. She + my GP and Macular Society got me onto NHS treatment. but it's been a battle sometimes. Ironically just before this lockdown crisis it all seemed sorted out.
So I shall try 3 things. Firstly contacting Cons. secretary. Secondly the Mac. Soc. and finally my MP. Seems such a rigmarole. I couldn't agree more Shimano….it's a maze!! Full of dead ends. It's true...he/she who shouts the loudest gets attention.
Good luck to all of you needing urgent injections. xx
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