Hope: AMD made our Welsh news last night... - Macular Society

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Hope

JJnan profile image
12 Replies

AMD made our Welsh news last night .after news at 10...at last something might get done on waiting times 👍x

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JJnan profile image
JJnan
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12 Replies
Eyeproblems profile image
Eyeproblems

I don't get Welsh TV so don't know what was said. Do you have problems getting treatment appointments? Do you have problems with injections?

Hope to hear from you. Best wishes.

Caradog29 profile image
Caradog29 in reply to Eyeproblems

Initial “urgent” referral for wet macular identified by optician about 8 weeks. No problem with injections thereafter, at least not in Cardiff area.

Blindness: Wales' eye care waiting times risk sight loss bbc.co.uk/news/uk-wales-485...

fed13 profile image
fed13 in reply to Caradog29

Yes! "People left to go blind on waiting lists" was a headline in the Daily Telegraph not long ago. I am very glad there was an item on the Welsh news channel, jjnan. 2 years ago I had to go private for my first injection; £1300, probably more now. Although I was promised I would be followed up in 4/6 weeks I had to raise Cain, (letters), to achieve this: and then I had to wait 4 hours in clinic for my injection. But the good news is things ARE better now!

Did any one see "Years and Years" on Tues.(11/6/19 BBC1 9p.m.)? Anne Reid's character had her AMD CURED with stem cell implants. I sat there green with envy! It was set only 8 years into the future. Will we be able to have a cure by then? It was reality TV to me: there was obviously an enormous waiting list on the NHS, which you could avoid by paying only £10K. We'll have to start saving!!

fed13 profile image
fed13 in reply to fed13

PS The follow up was on the NHS. I couldn't afford to go private at £1300 a throw.

But on the other hand I can get our injections free on the NHS, and I really am grateful for this.

JJnan profile image
JJnan in reply to Caradog29

Interesting how you dont have a prob with apps in Cardiff ..do you visit UHIW ?

Caradog29 profile image
Caradog29 in reply to JJnan

Now I’m in the system I have had 4 injections with no problem in UHW. I did have to have the initial referral privately as I didn’t fancy waiting 6-8 weeks after having been told I needed to be seen urgently.

pinkperfection profile image
pinkperfection in reply to Eyeproblems

I have had problems getting appointments on and off and also had to pay for two injections privately to get seen and yes it was horrendously expensive! This week I went to the clinic for an appointment which had been arranged and found they had cancelled it. I was due to be assessed. They did see me after me having to make a fuss and now the doctor I saw said I need another injection and blood tests asap to find out why I am not responding to treatment having had about 15 injections. Needless to say no sign of appointment yet and all you get when you ring number is recorded message and no one gets back to you. I feel there is enough stress without having to fight for appointments.

2468G profile image
2468G in reply to pinkperfection

Hi pinkperfection

Sorry things aren't getting easier for you. It's depressing to read yours and other peoples comments on services. You are so right, we are certainly stressed enough dealing with our sight problems without having to fight for appointments.

I hope you haven't had any more loss of vision and they get to the bottom of why you aren't responding to treatment.

Best wishes to you.

This miserable weather in t'north

Is not helping matters.

Love G

pinkperfection profile image
pinkperfection in reply to 2468G

Thank you for sympathy it just feels like they don't care. I know the NHS is under pressure but someone just answering the phone would help. I don't think my eye has got a lot worse but then I feel my left eye is compensating for it. I dread the thought that could go the same way.

You're right about the weather even here in East Anglia it has been very wet talk about flaming June!! How are you faring with your eyes?

2468G profile image
2468G in reply to pinkperfection

I too live in fear of my other eye going the same way. It's a horrible gnawing feeling some days. Makes me so anxious.

My next appointment is in 2 weeks so my fingers are crossed. I think there is some slight change (or am I imagining it). I'm going on holiday for a week so I'm hoping I can relax in the sun (wearing massive sunglasses obviously). My anxiety is getting the better of me lately.

Yes, a friendly voice answering the phone would be a great help to you. Good luck getting sorted out. X

pinkperfection profile image
pinkperfection in reply to 2468G

Enjoy your holiday we all need a break from the stress and worry.

Hope you have some good news for your next appointment. I also feel uncertain how much worse my eye is so understand your anxiety. Take care and have a good holiday. Best wishes.

JJnan profile image
JJnan in reply to pinkperfection

Nobody has mentioned "why" I'm not responding to injections...they just said ..not responding after 5 yrs 🤔

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