Call from hospital

[Bobbie915]

My community transport for next week has been cancelled. My husband phoned the hospital and was told they are having a meeting to decide which patients needing injections will get a slot and when. They are cancelling check up appointments. I have been having injection for my poor remaining eye every other month for quite a long time. Keeping fingers crossed that I will be getting a slot. Never thought I would say that!

[Rosalyn-helpline Partner]

Hello Bobbie915,

Which hospital are you attending?

Best wishes,

Macular Society Advice and Information Service

[Bobbie915 in reply to Rosalyn-helpline]

I go to the RUH Bath.

[Rosalyn-helpline Partner in reply to Bobbie915]

Hi Bobbie915,

Thank you. I have contacted our Communications team regarding this so that they are aware of the problem and will now tell them which hospital.

Kind regards.

[Koalajane in reply to Rosalyn-helpline]

I believe it is the same at Royal Shrewsbury Hospital as I was told the clinic was closed at the end of the week although they are carrying on with injections for the time being

[Rosalyn-helpline Partner in reply to Koalajane]

Hello Koalajane,

Ok thank you, I will pass this information on too.

Best wishes.

[Hidden in reply to Rosalyn-helpline]

Hi, Ros, to add to the data you're collecting- my friend's second ozurdex was cancelled by the Great Western Hospital Foundation Trust Swindon. She's been given an emergency number to ring.

[Rosalyn-helpline Partner in reply to Hidden]

Thank you eyesright,

I will pass this on.

Kind regards.

[Hidden in reply to Bobbie915]

My clinic although not the wet AMD one is at the Royal Liverpool. Their clinic may close to all but eye cancer patientsl but all patients will be reviewed individually by a consultant and will receive a phone call. There will obviously be stringent conditions for anyone attending for injection to protect both patient and staff.

[springcross]

That worries me Bobbie as I have had to go back to every four weeks for the last three injections due to leakage behind the macula again. Hope you get yours OK. x

[Koalajane]

I feel exactly the same

[Hidden]

Very worrying!

I hope the Macular society can advocate for all of us and send some sort of firm communication to the Gov't and all our clinics setting out the essential nature of our treatment and reviews!

I don't understand why eye clinics would consider restricting our appts unless their staffing levels have been decimated by illness and/ or self isolation issues?

Fingers crossed for everyone x

[fed13]

I too am having trouble. Macclesfield hospila. had trouble from the start, though having said that I have always found the staff kind, polite, considerate; they just lack, for whatever reason, the capacity to treat patients I am due a 2nd. injection of a loading of 2 routine injections. ( Have been having them on and off now for 2+ years. When the appointment didn't arrive I phoned up only to get a recorded message saying that "I am away from my desk, please phone this no.". I was then set on a merry-go round being passed from pillar to post only to be returned to the original no. "I am away...….." I felt like the Flying Dutchman.

I phoned PALS, (always an extremely good and reliable source of help and info'). They now call themselves Customer Services, and are based at the same hospital that I attend.

They said they would get back to me, . but they might be some time. Very Titus Oats. I have not heard from them since.

I am also about to get a seriously necessary cataract op. (which my consultant has been saying he was going to do for the past 2 years!!) on my so called good eye. I have had my pre. op. and passed with flying colours, and been told by my consultant that it would be couple or so weeks now; only to find out upon enquiring that I am ……on the xxxxxxxx waiting list YET again. At this rate I'm going to go permanently blind and eventually deceased before I see the light of day!!!

I know: I realise there are people much worse off than me. I know there's a terrible plague of biblical proportion stalking the land. I am really grateful to this site and its encouragement that we should self-advocate, and insist that saving eye-sight treatment is as vital as staying alive!

If/when I do get a clinic appointment I don't know how I/we are going to manage to keep 1 yard, let alone 2 yards away from each other, crammed together as we routinely are like sardines, for a minimum of 2 hours, let alone4!!

All and any advice please from all you good folk would be gratefully received. Thank you so much. Please tell me/us what's going on with you finding/getting appointments/information/and space to keep 2 yards away from other people/patients in the clinic?? xxBobbie. How are things now with you??

[Bobbie915 in reply to fed13]

Hi fed13, I haven’t heard back from the hospital yet! At our hospital, I nearly always have the injection on the same day as the check up. As these are not scheduled it is often a very long wait but better than having to make another long journey days later. I assume they are now planning to schedule injection appointment so they don’t have a waiting room full of people. How they are going to decide who will get these appointments, I have no idea. Mine has consistently been every other month for probably 3 years. After loosing central vision in one eye and the other badly damaged, due to lack of injections for about 5 months, I am very concerned.

Good luck to all. Hope they get it sorted out soon. xx

[Hidden in reply to Bobbie915]

Yesterday macsoc FB page said they, along with royal college have asked hosps to write to pts to encourage them to continue to attend appts.and reassure them about what precautions are being put in place to keep pts safe.

I commented on why then the worrying info we've seen posted here about what some hosp. are doing and asked macsoc to investigate asap! I believe from macsoc replies here the admins are passing the info on which is great but I wanted to get the issue out in the open to a wider community.

We shall have to see what unfolds.

Wishing everyone the very best x

[Bobbie915 in reply to Hidden]

Thanks for that Eyesright. Xx

[fed13]

Wait and see. No pun intended!! Bobbie I am so sorry you have suffered damage in one eye through lack of injections. As yet I have heard nothing back from PALS. Does anyone know how long you can leave it between pre-op. and actual op. I was told by the nurse at my pre-op this was only 3 months.. I had my (cataract) (good eye) pre.-op. 13/Jan. so unless I get my cataract op. done by 13/4/20...…….. I shall have to start all over again. I very badly need new glasses; all is blurred and I am beginning to see double. Alternatively I can blow my savings on Private treatment. How much does it cost to have cataract op. done privately? I daren't ask the hospital because they'll just say Ok , we can put her as low priority. odds on she'll go private. Paranoid?? Doesn't mean the bastards aren't out to get you.

I have a very black sense of humour, and little faith in the NHS' ability to cope.

[Bobbie915 in reply to fed13]

I know not all hospitals have the same routine. Before leaving the clinic, I make my next appointment so I always know well in advance when the next one will be. I would give them full marks for that. My next appointment is next Thursday. The person my husband spoke to, said they were not doing scan checks, just injections depending to your history record. They will be spacing the appointment so my time and day may change. I will send PM about cost of surgery.

[Hidden in reply to fed13]

Fed13, if you feel you can wait 6 months for op then id recommend joining Benenden society. Its a mutual, not for profit, that gets you seen quickly if nhs wait list longer than 5 weeks. Theres a 6 month wait from joining before you can access surgery though. Pre existing conditions not a problem.

Doesnt cover everything ( ie not a bupa like insurance) but does cataract. I had mine done through them, 1st class.

They have a 24hr gp helpline too which is excellent ( might be snowed under now mind).

Ive been a member over 30 years and had a few things done inc surgery , physio, mri etc . I pay about £60 a quarter for hubby and myself together.

If you look online make sure you select the society bit not the money back scheme for dental work etc as thats a different thing entirely. They use a network of existing private hospitals and also have their own in kent. For my cataract i got to choose both hospital and surgeon!

[Shimano]

Hi eyes right. Wish I had known about beneden prior to eye problems. Widowed last year, on my own and kids a long way away. If, and when, I get another injection appointment don’t feel I can ask anyone to drive me to hospital. Public transport very poor and needs several changes to get there and back. Also share anxieties re crowded waiting rooms. Seems a choice between self isolating and going blind or trying to get injections and at severe risk of getting virus. Sun shining today and I am very lucky to have a big garden so will go and make friends with the weeds. Have appt for review consultation on 4 April which I fear won’t happen. Is there any point harassing hospitals in this current dire situation. A lot of brave people in same situation. Stay as well as you can.

[Bobbie915 in reply to Shimano]

Hi Shimano, I live about 20 miles from the hospital and like you, it means several changes on the bus which is infrequent. I have never done it and at the moment I would be very reluctant to take the chance. I normally book transport with the voluntary community transport, but as they are all getting on in years, they have suspended the service. When the hospital confirms date and time of next week's injection I am hoping they will supply transport!! It sounds to me that they are trying to arrange things so that there are not large numbers in the waiting room. As you enter our hospital, it is a very large open area serving drinks and snacks., always teaming with people. I have to assume that this will be closed so patients can safely get to their clinics.

A really beautiful day for weed watching!! Take care and good luck.

[Hidden in reply to Shimano]

Hi shimano, dont feel despondent, the Benenden doesn't cover eye injections so you haven't missed out.

I've noticed our buses look quite empty so perversely might be ok to risk using as your travel is essential? Just sit away from anyone else, dont touch your face, and wash hands /use gel as soon as you can.

I wonder if the local eye support groups are doing anything re volunteer transport if the actual clinic isn't? Might be worth ringing to check if there's anything in your area, or maybe your local church or even the local council who I believe do run volunteer groups generally?

Is there an online community group for your area? You could post a query " anyone out there willing to drive someone to hospital for vital treatment?" Sometimes the help is out there waiting to be called upon, we just have to connect with it.

Is a taxi out of the question?

I'd have to take 2 buses to my clinic but the taxi goes direct in less than an eighth of the time so isn't as expensive as might be thought.

Sorry not to be able to offer better help.

Based on current govt info for the vast majority of folk this virus isn't a killer. Dont be complacent but equally don't feel panicked x

I know its worrying, and you may be in the at risk group, but if you follow the govt guidance you stand the best chance of protecting yourself and others. We all have to make our own choices but for me I would rather go for my inj than risk losing my sight - my circumstances are not yours though. If your clinic do offer you an inj then they are basically saying its essential for you and so current guidelines say you can travel. NB always check for latest info at the time!!

Make sure you know the difference between self isolation and social distancing and that you are doing what's appropriate to your circumstances. If you can, keep in touch with your family/friends on Skype or some such so you don't feel isolated and having to cope alone. Try to find something to laugh about at least once a day! Add a joke to our list

Keeping otherwise healthy with a positive mental attitude will also help generally - getting out into your garden sounds wonderful - I was in mine at 5am this morning "talking" to the frogs who were serenading me back before I went to work ( in a hospital lab receiving query coronavirus samples ). I'm going out there right now to catch the last of the sun .

Take care x

[Shimano in reply to Hidden]

Had thought buses might be an option along the lines you suggest. No gel to be got anywhere here but can wear gloves. Sounds like you have a pond. My goldfish have survived the winter and were quite frisky today. Take care.

[Shimano]

Thanks bobbie915. As macular mainly effects the elderly, who tend to support each other if no younger generation around, I guess this is a problem for a lot of us. Thanks for your reply. Good to know someone listening. Let me know how you get on.

[Catseyes235]

Yes it is strange that I am worrying about NOT having my injection in 6th April. Both eyes every 10 weeks but que sera sera!

[springcross]

Hi Bobbie. Just had a call from the Bristol Eye Hospital saying that they have had to cancel my appointment on 2 April in Weston as they are not doing any outreach clinics at the moment because of the virus. They have offered me an appointment at Bristol for the same day at the same time but they are doing the injections only so there will be no eye test and no scan. I'm not keen to go into Bristol but I do not want to miss my injection so I will have to risk it. I was disappointed to hear though that the next appointment won't be until eight weeks after that, by which time there will be leakage behind the macula again. She said she appreciated that but there is nothing she can do about it. Funnily enough, hubby and me were only talking about this this morning. Hey Ho. Drats!!

[Bobbie915 in reply to springcross]

Hello Springcross, I have just had a phone call from the Bath hospital. They have given me an appointment for Friday this week, instead of Thursday. That's a relief. Now I have to try to get transport.

I agree with you about Bristol, - not a place I would choose, especially with the traffic. However, their eye hospital, I believe, is highly recommended. When I was in the Bristol Infirmary for a heart by-pass, my husband used to go to the park and ride which helped with the traffic stress. We have always done the same when going to the Bath hospital. He is only driving locally now - not easy with my poor sight and his terminal cancer - not to mention old age!!

Best wishes, Bobbie

[TwasBrillig in reply to Bobbie915]

Hi Bobbie, is it worth checking if there is help on offer in your community? I’ve heard that all over the country there are local groups of volunteers collecting shopping and meds for vulnerable people. I’m not on Facebook but can see the FB page for my village and the council has given a number for those who need help. I would think there might be people who would be happy to drive you to hospital given your circumstances

[springcross in reply to Bobbie915]

Hi Bobbie. We usually do use P & R from Long Ashton but my hubby said he would drive rather than be sat in amongst a lot of people, even if it means he drops me off outside and parks up until I ring him to come and get me. Sorry to hear about your hubby - it never rains does it? Always something to worry about. Good luck with everything and I hope you get on well on Friday. Do you not have a care organisation near where you live? x

[Bobbie915 in reply to springcross]

The only help we have used is the Mendip Community Transport for hospital appointments. Unfortunately, they are all now in isolation. My husband has only been driving a mile to the shops for a while now. At nearly 90 I think he has done very well. Very hard to give up your independence!! xx

[springcross]

At nearly 90, I think he's done brilliantly and long may he continue to do so. x

[Tessa83]

Hello yes I too have had a letter this morning about appointments and transport all a bit unclear I now have amd in my good eye And it was mentioned for the first time ever the cost of the injections ,but jif I go blind it will cost the health service a lot more ,I am so worried where to turn