97 years old, both eyes

I am writing for my 97 year old mother. She was diagnosed with wet MD about five years ago. Just one eye but now both. She gets an 8 weekly app at Ipswich hospital. She has had more injections than I care to think about but now the dept is so busy her apps are 10 weeks and then if they say she needs injections she waits another 6 weeks. She is very conscious of the deterioration in her sight! She is infirm, walks with a frame and very old. Should she go the private route as if she gets an injection in time the bleeding stops and she has sometimes 6 months without an injection. If she goes private where do we go?

[Hidden]

Hi. Sending hugs to you and your mum x have you spoken to the Macular Society? Google their website for helpline etc. They can advise you if your mum should be getting better treatment although times between inj is very individual. Rule of thumb though. If my sight deteriorates noticeably I expect treatment by 3 weeks and usually get it in 2.

Private treatment will be very expensive and I would rather complain to the hospital first to see if you can get improvements there. The PALS is easy to use and I've found it gets results. Contact them by email or telephone. Your hospital website will have details.

Best of luck going forward x

[Hidden in reply to Hidden]

Thanks for this and moral support - shall post once I have any results

[RP1944]

Going private isn't cheap, about £1,000 an injection I believe. However if you can afford it your mum would get much more and quicker care. The NHS is overwhelmed and cannot cope with the sheer volume of us with AMD. The unit I attend is now leaving longer between appointments. Good luck.

[fed12]

Going private cost me £1,320, (when I'd been quoted £1,000, and been told I'd get follow up on NHS). When it looked as if I wasn't going to get follow up on time with NHS, (same situation as above; RP1944 reply), and PALS seemed to me unable to do anything, I wrote a desperate diatribe/begging letter to the Trust, with copies to MP, GP, Consultant. Result:- more clinics were organised and I got my NHS injections on time. And so did others I hope. I also had a letter published in my local paper re all this. I sent copies and comments to Jeremy Hunt and Philip Hammond (basically the problem is UNDERFUNDING of NHS), from whom I have heard ZILCH. I did send a copy to Theresa May, and had an acknowledgement from a civil servant.

So my advice would be don't go private; Do complain, and make as much "noise" as possible. All the best!! Let us know how you get on, and do contact the Macular Society!

[Hidden]

I thanks for this - Ipswich Hospital have a switchboard and you don't get put through but I shall be on it in the morning and also let you know what transpires.

[JJnan]

have you tried ringing consultants secretary ? that's my first port of call. then Macula society , hope you get some joy xxxxx

[Rosalyn-helpline Partner]

Dear Tinlady,

Please contact us on the Macular Society helpline for further discussion.

The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

[e-mail]

Kind regards,

[Hidden]

Thank you everyone for your support and advice. My mother now has an appointment for Wednesday this week. I have spoken to the Eye Clinic Liason Officer and she has told me that if we have problems getting an appointment in the future in the correct time the. I can speak to her and she will sort it!

Hopefully we shall have forward progress from now.

Thank you all again.