I wish to express my thanks to Pam Perceval-Maxwell for her excellent letter in the Daily Telegraph 24/8/22, headlined "Living with the Anxiety of losing one's sight for want of an appointment for an essential injection". I meant to post sooner about this.
This letter only echoes the Telegraph's Health Editor, Laura Donnelly's article in the Telegraph, "Hundreds go blind waiting for NHS treatment". (7/6/18: so NOTHING has changed!). It is a constant battle to get timely appointments for these sight saving injections. WHY?? It must surely be obvious to the meanest of intelligence that saving patients' sight, saves money. The response Pam P-M got from her health board, when she complained via her Senedd member, just accepting the "permanent impact on people's sight", is pathetic!!
It behoves us all who are battling to get these eye injections at the appropriate time to make as much noise as we possibly can. By all complaining and refusing the status quo we might just get somewhere. Don't get fobbed off! Lack of staff, (or "lack of capacity" in my case), is bit feeble.
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fed13
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I have to say I am lucky that my injections carried on through the pandemic and if the eye doctor says my next appointment will be in 8 weeks it is just that. It has been like this for the last few years. Am I just lucky?
Like Koalajane, my injections started during the pandemic (March last year). As soon as my optician realised from the scans my condition had dramatically worsened, he referred me to the eye hospital during his lunch break. One week later I had a letter to attend the eye hospital the following week which was when my injections started. After the loading doses, the injections have remained every six weeks with the exception of one time which was eight weeks. And like Pam P-M, my govt and health board are also via the Senedd.
With that in mind, I would like to add... On the opticians visit just prior to the eye hospital, Glaucoma was detected. Now while (in my case) my macular degeneration is treated within an eye hospital, I did have to attend the normal hospital to see a Glaucoma specialist - that was when wait times hit me, along with lack of patience and manners on their part. I waited roughly six months to be seen, only to be asked rudely if I could "move a little quicker" transferring from my wheelchair and vision now only in my right eye. She (the glaucoma specialist) then said "hmmm there's a possibility of it there, we'll see you in 4 months time". Well, that appointment was Sept last year, I'm still waiting for that 4 month follow up appointment. I've been relying on my optician and hospital opthalmologists to check if the glaucoma is present or not, I've been brushed off and left no alternative.
That's disgraceful!! Who on earth said "can you move a little quicker". If it were me I'd complain. Of course no-one will own up: but the point will have been made.
Like Pam P-M I turned to the press, although only the local press. But this was of interest to local readers. I got letters and photos printed.
Health Authorities hate bad publicity, so don't think that they don't notice and care. Get something in the press if you can.
Whilst of course I am grateful for these injections free on the NHS, I had to go privately to be treated at first. £1,300 odd for one appointment and injection; it'll be more now I expect.
It was the Glaucoma specialist who showed the lack of patience and manners, she was the one who asked me if I could move a little quicker. Still related but a different area... I was seen by different depts in one hospital, some related to my OA, some for a stroke etc. I was treated so appallingly that the ones that call themselves 'medical professionals' that I'd seen, had actually done more damage to my physical health. Even a simple one hour surgery ended up as a six hour surgery because someone messed up. I even lost my career due to my health being so bad then and that's when I contacted a solicitor. Both the management and admin of that hospital were found guilty of negligence and malpractice, and that was before the solicitor started on the different depts I'd been seen in. I didn't pursue the case, I was, at that time in so much pain and had no use of either arms, the solicitor was sending me reems of paperwork (war and peace size) asking that I correct anything needed and get it back to her asap. It all got too much so I stopped it, but they all, at that hospital remember me 8 years later!
And that hospital also happens to be where the rude Glaucoma specialist is !
Didn’t see the letter and don’t know which health board, but I’m in Wales and have been treated by both Cardiff and Vale and Gwent health boards and have to say the service provided by both, including throughout pandemic, has been faultless. No missed or late appointments.
My clinic have been brilliant I have been having injections monthly for 11 years and they have allowed me to book 2 appointments a time so I am never more than 4 weeks away from an injection, we tried 6 and 8 weeks and they was a disaster I know I am very fortunate and it maybe because I have only central vision in one eye now which is the one they is injected. Being on the NICE committee for DMO they are very aware of the issues believe me.
I am dreadfully sorry to read Kohai's experience. That must be a terrible hospital. Dare I ask where it is or roughly whereabouts? Can you change to another hospital? Sending you a hug! xx
But I am so glad to see so many good stories posted. Perhaps we are winning, but there's a long way to go. Ironically my experience at my injection clinic improved out of all recognition due to the pandemic. Before a huge clinic was called in at the same time at 12 noon. The consultant came round to see us allindividually to get our consent. (Would we have been there if we didn't want an injection?) So usually I had to wait 4 hours until I got my injection. I can remember pointing out the abject foolishness of this process....to, you've guessed it, no avail.
However after and during the pandemic we were given proper appointments, and there was no waiting. One more good story!
I second this as well. It is such a lottery! I have just moved from London to Edinburgh - I was diagnosed with wet AMD in the right eye in late 2019 just before the pandemic hit, and was seen regularly and efficiently at Moorfields all through 2020 and 2021. I often had to wait for ages in the waiting rooms but I was always scanned, always saw a doctor, and had my injections at the right intervals. I have been in Edinburgh since February and the waiting list is terrifying. I had to go back down to London twice because they could not start the injections here in time.
And then my other eye developed a great pool of fluid - I went to Vision Express and they saw it on a scan and referred me to the Eye Pavilion, but it was twelve days before I could be seen as an emergency there. I was very lucky and the nurse was able to fit me in for an injection at the end of that afternoon, but after that it has been an incredible struggle to get appointments and although they should have been at 4 week intervals, they have been at 6, 7, and 8 weeks. I cannot fault the staff - they go beyond the call of duty, they are kind and humane and very good at what they do.
But the system is not fit for purpose up here - you do not get regular scans as at Moorfields so you are always worried that something might be developing, and there does not seem to be an easily accessible A&E for emergencies. The paperwork is hit and miss - I still have not had any reports relayed to me and most of my appointments have been made over the phone with no paper confirmation. If I had not been a nuisance and rung them at intervals to ask (at one point all my paperwork had been mislaid between a secretary and the appointments department) I am very afraid that a catastrophe might have happened. As it is, things are a bit more stable now - but I still don't know when I will get my next pair of injections...
Thank you for your long reply, Elvirakate. I am glad to hear things are a bit more stable now. Let us just HOPE they will stay that way and improve. Reading your post I kept on hearing bells ringing! Just keep on nagging the Health Authorities, copying in the consultants concerned + as I've said, the press. Nagging MPs helps too, especially as there MAY be a general election on the horizon!?
I'm not sure that any election will make much difference in Scotland particularly if they forge on with independence. I'm all for efficient devolution but I fear the health service will suffer horribly if connections with the rest of the UK are severed.
Thank you fed 13 and all those who responded with their own experiences. I have been fortunate to now have a lovely young consultant who has taken the issue of having severe pain with the injections seriously after being consistently told they are painless and having it implied I was just hysterical. So things have improved there. However, the issue of erratic appointments and having to pester to get an idea of the next one really affects me as public transport to the hospital involves trains and buses and long distance. Because of that one of my two children have to take time off work and stay overnight to take me for appointments. They live a distance away. It is a nightmare coordinating things. I hate feeling like a total nuisance phoning secretaries etc. And delay as long as I can. Living alone, the prospect of loosing vision is disastrous. I’m sure many users of this site feel the same. I have joined an organisation called Silver Voices and wonder if this is an issue they could take up. Non political And primarily for over sixties. All the best everyone.
Ps. Live in Scotland and Can sympathise with the person who moved from a good service in London to a cock up in Edinburgh. The variation in quality of treatment greatly affects people’s lives!
I am in Scotland too, Glasgow. Appointments are rushed, scans hardly looked at and told stable when I know I am not. I've been told stable before and then sight loss increases. I even feel the consultants can't be bothered with questions. They just want you out of the door and the next one in.
I am so sorry Scotland is so bad at treating AMD, eyes etc. I know it's a long shot, but ave you approached/written to Nicola Sturgeon? You could do so, sending a copy to your local "rag".
As I said my local paper lapped it all up. It is so good to see it out there. Send the print copy to your H.A. CEO or whatever he/she calls themselves.
I just don't understand/comprehend why the nation's health as regards eye sight is such a Cinderella.
So put your experiences in writing, and make sure it goes to the head bod. "Don't mess with the monkeys, speak to the organ grinder!" Sending you a hug xx. Do get back to us and tell us how you get on, please.
It’s sad to think that patients are treated differently in areas all over the UK. Im one of the lucky ones, well looked after and treated regularly. The nurses and consultants are so good. Mine in particular, after viewing scans etc. he takes the time to discuss how I feel and how I'm coping and shows me my scans, then discusses the next step in treatment. I’ve been going to the Pilgrim Hospital in Lincolnshire for 5yrs and had regular injections sometimes every 4 weeks and sometimes 6 weeks. If I have the slightest thing unusual with my eyes, they will see me more or less straight away the same day. It should be the same treatment for everyone no matter were they live. Take care everyone.
Thanks! So good to get such a good news story. All the very best. I meant to say earlier that I have had enormous support both emotionally and practically from the Macular Society. I can't speak too highly of them. I feel I couldn't have survived without them, nor of course without all the support from this forum. xx
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particularly if they forge on with independence. I'm all for efficient devolution but I fear the health service will suffer horribly if connections with the rest of the UK are severed.
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