Routine Follow Up

[fed13]

I've had my AMD treated with Eylea injections, and recently I've not needed more injections, but I was still regularly followed up in outpatients (OPD). I was last seen in Feb/ 21, but since then I seemed to have fallen off their radar.

I understood in Feb. I would be seen in 6 months, but to date have had no appointment. I emailed an inquiry, but apart from a routine acknowledgement I had no reply. I phoned PALS, who now call themselves "Customer Care", who couldn't help me, apart from saying that I was "on a waiting list, and would be for some time". (Not what I expected from PALS!)

I know obviously Covid has had a devastating affect on everything, but I've been greatly impressed how well my eyes have been looked after throughout, (including a very successful cataract op. on my good eye).

Now however I have washed up on some waiting list when I should be being routinely followed up in OPD. Gentle nudges don't seem to be working!

Is this the experience of others? I know I could shout and get heavy, (involve MP, GP, Macular Society, as I have done in the past when I was dumped on a "waiting list" when I was supposed to be having regular injections). In fact I wish when others are left "To go blind on waiting lists"*, they too would do likewise. This results in more clinics.

What is your advise? How long is it "safe" to leave AMD eyes between OPD check-ups? I should hate to lose the sight of my good eye through lack of early diagnosis. Do I have to "get heavy" again?

What do you all advise? Thanks!

(*Ref. Laura Donnelly health Correspondent Daily Telegraph 14/1/13 and 6/6/18)

[tallyho]

Hi there that must be a worry for you. When you mention your good and bad eye is there a lot of difference in your sight between the two? Do you have no AMD in the good eye? If your sight is already really impacted by AMD and your good eye is the one your depend on then I would def be pushing for an appointment. Wishing you all the best.

[fed12 in reply to tallyho]

Thanks tallyho. I'll keep you posted.

[CSCRkid]

Hi, I am under obs and treatment for CSR at my EyeHospital in the Midlands and am often told by the consultant that he would like to see me in 3 months. It is often longer than that when my appt come through. Like you calls to the Apointments line is met with an audible shrug, so my advice is look up your consultant, find his secretary and call and enquire when you might/should be seen. Unfortunately, the NHS is not joined up, the appointments process works on lists and medical staff work on medical need. There is often a crack in between and you may well fall into it. It has never been in my character to be a 'nuisance' but after 17 years of being under the eye hospital, my stance is that it is my sight, my health and if I need to push to protect it then I will!

Hope you get it sorted. Martin

[fed12 in reply to CSCRkid]

Thanks.

I have v. good sight in my right eye which is the one I had the cataract op. on. I have a degree of dry AMD in it. The sight in my left eye, (wet AMD), is so poor I can't read the sheller chart at all! This is the one I have had umpteen Eylea injections in. My optician failed to diagnose the wet AMD. I had to do this via the internet. Initially I had to go private and had a hell of a job getting into the NHS system. And this before Covid.

I so so agree with analogy of falling down a crack between medics and booking staff. Hey ho! This is where I ring my consultant's medical secretary. I wonder how I will get on with her this time. I think she is fed up to the back teeth with her boss's patient's begging for appointments! But here goes. I'll keep you posted. I couldn't help smiling at your comment about the audible shrug from appointments....this is exactly what I got from PALS ..oops "Customer Services"..xx

[oldoakowl]

I had dry MD in one eye and wet in the other. Then, boom! the good eye went wet, too. It can happen at any time.

So, yes, you need to be followed up regularly. Either that or be confident that you can get an emergency appointment at the first change in vision in your dry-only eye. I'm in the States and can trust that I will get an appointment within 1-3 days, but it seems to me that is an impossible dream in England.

My advice is to be as pushy as necessary to get what you need and deserve.

[Shimano]

Dear Fed 13. I recommend going to an optician you trust and having regular scans done privately. Mine cost around £30. Am fortunate that the optician I have has contacted the eye clinic by e mail giving the name of my consultant and reporting any worrying deterioration or fluid build up. She has done this three times. Like you, I keep getting lost in the appointment lists and going too long between jags. Great that your treatment has been successful so far. All the best of luck.

[milehi]

Here in the USA It is customary to get injections every 6 to 8 weeks. I have been on Eylea about eight years first the left eye and five years ago the right eye. A friend of mine prior to getting Eylea shots was on a six month interval to see her opthamologist and wound up with a collapsed macula and loss of sight in the affected eye. Had her exams been more frequent she may have escaped this unfortunate result.

Recently, I changed eye doctors to gain a more careful and patient centered care. This change allowed me to avoid the trend here in the USA toward mass assembly line style injection practices that place high productivity above all else. Being proactive can help save your sight.

[fed13]

Thanks for all the replies. I'll get cracking tomorrow, (MON), and let you all know what happens. We have a wonderful Macular Society in Britain, of which I am a paid up member and will turn to them for help if I need it.

Bye now and Thanks!! xx

[springcross]

Hi fed13. I think you should chase and push. You are not alone, I am supposed to be having Eylea injections four weeks apart to dry my wet macula in my left eye in readiness for a cataract op. I was told the week before last that the next injection would be towards the end of October for my usual location (the last one was 2 Sept) so it would have been seven to eight weeks before my next one (my consultant told me every four weeks). Fortunately, I managed to get an appointment in another location within the area for just under the four weeks but I am dreading the next one as I may not be so lucky. I too was on a waiting list for an appointment and when I mentioned that it has to be every four weeks, I was told that they are well aware of that!! It's just so worrying what is happening and people's sight will suffer as a result. Good luck with yours. x

[Catseyes235]

Yes like others I recommend going through optician and /or doctor as you will probably need one or other to refer you, even though you feel you should already be in the system. Good luck.

[fed13]

Thanks. I am now with Specsavers, and have been happy with them for some time. I will go and see them, if I run up against a brick wall! When I desperately needed a cataract op. in good eye, v fortunately rather than give me new glasses Specsavers actually phoned my ophthalmology dept. I had passed the op. assessment some weeks ago. Specsavers worked the oracle and I was given a date for the op. Felt like I was on the road to Damascus afterwards. Otherwise I will bring in the heavy guns....GP MP etc.

[fed13]

It's me again. Thanks so much for all the encouragement and advise. It makes me feel SO much more confident when I decide to push and nag. If others are in dire straits it's down to them to do likewise. I'm not going to fall into the trap of feeling we're all in the same boat, so why should I be special!?

I phoned my GP surgery yesterday. The situation is worse than I thought. Apparently my ophthalmologist told her in February this year he was following me up in 3 months, (not 6 as I thought).

So I requested she write to my consultant and say that I should have been seen in MAY, and please could I have an appointment ASAP! As I'm not sure when or if this will happen I too have written to him. He'll get the letter tomorrow, and I will keep you up to date with developments. xx

[Shimano]

More power to your elbow fed 13. Surprised your GP is involved. Don’t think whoever my GP is even knows of my eye problems. All done via optician. The effort to get any attention from a GP in my area would involve a marathon on the phone and a very long wait for appt. at best by phone.

[fed13 in reply to Shimano]

Yes! Same here, I was lucky and got thro' to the office, who had details of a letter my ophthalmologist sent re. my last OPD appmt. He said in Feb. I was to be checked again in May. But as I said the booking team didn't give me an appmt., but instead, (unbeknown to everyone), put me on a waiting list, where I would, along with others, languish and go blind. Nice!

Not that I'm necessarily having a go at the booking team; more the system that allows that to happen!

2 things happened apropos my messaging my GP to ask my consultant for an appointment, and my writing to him.

Firstly and most importantly yesterday (the day he'd have got the letter), a member of the booking team rang and gave me an appmt. in a weeks time. What a coincidence. Secondly my GP's office rang and I should write myself, not her.

So the message here is do your own thing! Don't take "There are no appointments, you're on the waiting and will be for some time" for an answer. WRITE YOURSELF! Thanks for everyone's input, help and advice!! xxx

[springcross in reply to fed13]

That's great news about your appointment fed13, hoping you won't have any hassle next time. 🤞

[Shimano]

Becoming a DIY society. What happens when you are past doing all the chasing around yourself and you have no one around to do it for you. Getting old in this society is becoming a frightening prospect if you live alone and are not computer literate. Hope dont have to change energy suppliers as the last change was a total nightmare And went on for months. Sorry about the rant but it has cleared the tubes! Xxx

[fed13 in reply to Shimano]

Yes!! I am lucky in that respect as I have a son keen to look after me, but I really feel for those that don't have a support network. There is supposed to be on with the NHS, but so many fall thro' the cracks.

I shall talk to my ophthalmologist consultant, and the booking staff with whom I leave my details for next appointment, about how I fell thro' the crack this time, and how to prevent it happening next time, and to others! I'm shocked that my consultants follow up request was ignored, and that I was dumped on a waiting list and abandoned.

[springcross in reply to fed13]

I had my injection earlier this morning and was told that it will be four weeks for the next one as there is still some fluid behind the macula. I have explained again (saw someone different) that it's supposed to be every four weeks anyway, as per my consultant, but couldn't be given one the last time as there wasn't an appointment to give and I was on a waiting list and that they are quite aware that it should be four weeks. He said it will be specified for four weeks and at my usual place next time too and he seemed quite adamant about it. I will wait and see but I somehow doubt it!

[fed13 in reply to springcross]

Good for you! Tell us how you get on. One way to deal with the problem is to approach your local paper, or get a letter in it. Then you can print it out and send copies to all concerned. I has terrible problems with my H.A. being unable to give me an appointment within the correct time. I did get quite a splash in the local paper. I quoted articles in the daily Telegraph about ophthalmology patients left to go blind on waiting lists. (See above).

This was before Covid, and things got better. However it's back to square 1 now. Keep us informed of your "progress" xx

[FireDrake]

Hi - continuing problem here with getting seen by the NHS. In the past I have contacted the secretary of the consultant and this has worked. The last time I phoned for an appointment I was fobbed off. I find that the stress of trying to get an appointment is greater than injections. What I did as my patience was at an end was to phone the hospital and say I was making a complaint. Miraculously I was offered 2 times that an appointment would be available on the day I needed it. If you don't get heavy you won't get an appointment. However I feel that many people are failing to get the treatment they need for the best outcome.

[fed13]

Thanks FireDrake. It seems to be a fact of life that one can't get an appointment the routine way: one has to nag and get heavy. Complaining seems to be the only way. As for me, because I had been left on a waiting list for 4 months over time for my appointment, the consultant asked me to wait till the end of the OPD clinic, (1 and 1/2 hrs.), and he gave me an injection then and there.

I an due a F/U in 6 weeks time. More news then.