Pending nhs strike and eye care

[kohai]

Has anyone from the Macular Society macularsociety1 heard if or how the pending NHS nurse strikes will affect our treatment at the eye hospitals? Many of us remember strikes over the years and decades so know if these aren't resolved quickly,they can go on for some time.

[Shimano]

no idea kohai but find the idea very alarming. Trying not to dwell on it. The consequences for anyone getting regular treatments, not just MD, could be awful.

[kohai in reply to Shimano]

While its not something I dwell on, just do think about now and then. My injections stayed at every four weeks, even after the loading doses for some time, but having spinal problems it was too much to handle and I admit I considered stopping them, but the specialist gave some leeway and said the longest between injections they could do was six weeks. I asked "After the dose injected wears off, how long is it before my sight starts to become affected if another injection isn't done?".. the answer of 8 weeks for my current eye state shocked me to say the least. What does concern me is that if they strike a week or few days before my next injection, and the strike goes on longer than expected, it could affect my sight. While I doubt the strike will go on longer than 8 weeks, anything is possible.

After everything the nurses did during the pandemic, I wholeheartedly agree they deserve a raise, I'd just prefer not to have my sight lessen due to strikes. I'm pretty sure many feel the same way.

**** I do know that 8 week time frame is for me personally and does NOT apply to others. Please check with your specialist to find out what your time frame is.

[Shimano in reply to kohai]

my experience is that once an appointment is cancelled, in my case because my consultant was ill, then again because on holiday, things go to bagwash. I was ll weeks one time instead of six. If nurses are off there will be a huge backlog and appointments are very pressurised as it is. Plus the appointments staff are already stretched to breaking point and difficult to get hold of. I share your worries kohai but hope things go ok with you. The staff do deserve a pay rise. Hopefully they will get one.

[Weepie]

My last injection was May 17th and I’ve just received an appointment for 20th September!

[kohai in reply to Weepie]

How often are yours meant to be? Hopefully the one on 20th will still go ahead, but as nothing has been officially said, its anyone's guess at the moment sadly.

[Weepie]

anywhere between 4 and 11 weeks. Absolutely no way of knowing

[Shimano in reply to Weepie]

that is pretty appalling weepie. No wonder you are upset. I assume you have been phoning to push for earlier appointments or have some sort of explanation. All the best to you. Keep pushing.

[Weepie in reply to Shimano]

Thanks for that , the hospital has a recorded message saying all injections have been delayed and to leave a message. My message was met with an appointment for September. I haven’t pushed earlier because I appreciate that new patients have to have their 3 loading jabs and my sight seems fairly stable. Not long to go now

[kohai]

@Weepie, one thing I learnt a long time ago with my health... "having patience and being understanding about others ''needing' to go first" and convincing myself how others are worse off than me so I don't mind waiting, while you're being a good person, believe me the nhs will take advantage of that forever more! They go through their list of who gets seen next, see your name, think "oh, this person said they didn't mind waiting", so they move you further down the list for appointments. I was the same for decades till it gets to the point you get fed up of always being second, always the one made to wait..

I lost the central vision in my left eye within 5 months last year so do know what happens to me if i'm made to wait.

If you feel your sight is worsening, please don't sit on the sidelines for others to go first, there will always be people needing loading doses, you are just as entitled to be seen as anyone else.

[kohai]

I was hoping so hard I wouldn't have to write this update.

My last appointment was August 10th, my left eye is beyond help so I have an injection in the right one every six weeks. My appointment was due next week, Wednesday 21st Sept but I hadn't had the time/date letter.

I rang the eye hospital today and was told... "Not only do we have a backlog, for which we've another couple of clinics to try and cope with, but at present we are only seeing critical and urgent cases. If you are coming in for an eye injection then unfortunately we won't even know if there are any appointments available for at least a month at the least."

(So they won't know till mid-end October if they have a free opening for November).

What scares me the most is that I lived through just how quickly the sight in my left eye deteriorated to the point I only have distorted and blank vision.

(example.. I have a large egg shaped glass plant pot/vase on top of my fireplace in the middle, two large candles either side and my Alexa on the end. Looking with just my left eye, my Alexa box is completely distorted and blurry, the two candles to its keft are so blurry I can't make out what they are, the rest of the items, to me, are not there, its all blank). I know all I can do now is hope like crazy an appointment comes sooner than later as it really does scare me beyond words about losing my remaining sight. My thoughts and heart goes out to everyone in this situation, of basically the unknown and hopes of the situation improving soon.

[Hidden in reply to kohai]

It would be worth checking with the appointment staff at the eye hospital where all the centres which can give the eye injections in your area are. In my county there are several. You may be able to get an earlier appointment that way although one of the main issues about looking for a different centre to go to for example is that you cant drive yourself and noone is usually available to take you.

If your vision deteriorates at all go to an optician who can do the detailed retinal scans (I've forgotten the name of them) for a same day appointment and can refer you urgently to the eye hospital A & E to be seen that or the next day so you could hopefully be provided with an earlier appointment or, go straight to eye hospital A & E yourself. I am not sure all counties or hospitals are in this scheme but its how I got my first referral. My optician of the time didn't do this scan but told me who did.

In our area there doesn't seem to be a way of getting an appointment if you have to miss one as I did with Covid. The result was after numerous phone calls that it was a 12 week instead of 6 week gap (I was being sensible trying not to spread covid although I had no symptoms). If this happens again I will go to the eye hospital as soon as I see a deterioration. It's exhausting and complicated but you have to be proactive. Good luck!

[kohai in reply to Hidden]

While many hospitals do have this type of booking system, not all have been added too it so still have the appointments system within their own hospital. The eye hospital I go too, if it was a "generic" hospital and not specifically an eye hospital, their booking system may differ, but as is, I have to phone them direct about appointments.

[Shimano]

I am so, so sorry. This is a truly awful and frightening situation. I am also angry that things have come to this pass in the nhs in spite of dedicated staff. Sending good vibes that you get an appointment soon.

[kohai]

All we can do is hope whomever is responsible within the govt for the nhs pay rises, come to their senses sooner rather than later and give them their much overdue raise. The longer the strike, the longer their backlog will be.

Before I speak with my optician, does anyone know if the opticians scan machine can see the same in the eye as the one the hospital uses? If it does, if I explain the situation to my optician, maybe they can monitor it? If it shows its getting worse or my remaining sight is worsening, I can contact the hospital... I'm just clasping at straws and throwing ideas out there now.

[Hidden in reply to kohai]

You need to check if they do the OCT scan. In my area you can be seen urgently and free by a couple of opticians that do this scan and get a referral letter to take to the eye hospital asap.

[kohai in reply to Hidden]

Sadly this isn't true of all opticians as I found out. As I made an appointment that was "not my routine check", I was told this;- (bearing in mind I do get nhs and dwp benefits/certain free nhs costs)

An OCT scan is available free of charge however it is a basic one of the eye.

If you want an OCT scan that shows a lot more detail, for example showing any specific condition at the back of the eye then it costs £10.

I did pay the £10. as I needed both the optician and myself to know the exact state of the back of my eye. The eye hospital I go too have a similar timeframe to GP's here, ten minutes per patient, and as we're told to keep still while the specialist examines the eye(s) with bright lights, its not a time to ask questions. I get the chance to ask maybe one, two at most questions, as long as they don't require long answers or i get strongly reminded how busy they are so don't have time! So until I asked the optician to do that full scan, I had no idea exactly what was happening. I get told if its stable, responding to treatment or not by the hospital, thats all they tell me. The optician visit was beneficial though, she not only spoke with her seniors showing them my scans, airing her concerns, she also rang the hospital to find out what was going on. Its aa relief knowing the optician has my back.

[KetherS]

I get my opticians do do a scan usually the day before my hospital appointment. They sacan and discuss with me so i know what is likely to be tge time between injections as for me this fluctuates. I am able to have a discussion with the optoptioptioptioptioptioptioptician andd compare orevious scans. I do have tk pay £10 for this but i ferl being able to discuss my condition helpful, the hospital staff are very very busy. I guess i am lucky to be able to pay for this but to me its money well spent. I am given a free scann by my opticion annually with my routine eye test.

[kohai in reply to KetherS]

How often are your eye hospital visits? After the initial loading doses that started March last year, my injections were still done on a 4 week basis. A couple of months after the loading doses were done, injections were stopped on my left eye as it wasn't responding to the injections.

Because the hospital I visit is meant to be every 6 weeks (now on week 8 of waiting), I had the £10. deep eye scan at my opticians, so while i'm waiting for the eye hospital to catch up on their backlog (pre and during the nhs strike), knowing the optician has a decent full scan of my eyes as a baseline lessens my worry. I know if my right sight starts to change, the opticians will see meme within 24 hours andand they have their own OCT scan to use for comparison. I can't imagine they'd agree to my going in every 6 weeks though.

- I know at some point soon my right central vision will be too damaged to use, just like my left one, its inevitable. In the meantime, i'm decluttering my house, buying talking gadgets from the RNIB online shop (so I can figure out how they work 'before' my remaining vision goes). I don't need the talking scales... If I can't get into my jeans, I won't neeneed a talking scale to tell me I put on weight hahaha. But it keeps my mind occupied so I don't worry about how many weeks have gone overdue from my last injection.

*And reading your message, its nice to see i'm not the onlt one who has issues typintyping on here where one simple word ends up taking up two lines mispelmispelling andand repeating itself multiple times. It twndtwnds to happen morw to me when I try to type the word

opticoptician.

[kohai]

As an update, the staff at the eye hospital I go too, Amman Valley, Ammanford, south west Wales have told me they are still back-logged by one month.

 My last appointment was August 10th and I'm still having my right eye injected every six weeks (they stopped doing my left eye August last year as it stopped responding to treat). So I had an appointment today, but only because my optician said to me "If you haven't had an appointment time/date within a month let me know because you really do need to be seen". I lost track of time to be honest, but thankfully she hadn't. The eye hospital phoned saying my optician had been in touch. It's a good job she did because apart from the scarring across my central retina already starting, which I already knew about... on my August 10th appointment I was told I only had a few bubbles of fluid behind the retina, today i'm told there are now a lot more bubbles of fluid. I was asked if I experienced any problems, I have. With my right eye it's like I'm constantly straining to see through a cloudy film over my eye. I tried various eye washes, I soaked my eye (and half my face and ear in the process) but nothing cleared it. Given my right eye is the only one I have any vision in, albeit long vision only and very limited detail near and far, especially near.. it makes me wonder, if my optician hadn't phoned to get me seen, and I'd still been waiting, just how bad my condition would've gotten, and if one or more of those bubbles burst. It does scare me having my sight at such risk not knowing when my next appointment will be and how much worse it'll be because of the delays.