Just got AMD. Should I go private?

[isherwoodjon]

Am male 67. Diagnosed at opticians &confirmed at Eye Casualty. Just 5 days after seeing distorted lines.

[AlinaL]

Hi,

I'd give the Macular Society helpline a call they'll give you the best advice.

I assume you've been diagnosed with wet MD, if so the NHS should treat you quickly so you should be okay. There is no treatment for dry MD.

For wet MD the injections are expensive and given that you may need them every 6-8 weeks, it's a big decision to go private. Back in Feb 2012 I was quoted £700 per Avastin injection and £1200 per Lucentis injection... the cost alone stopped me from going private as I didn't know how many and for how long I'd need injections.

So my advice would be to persue the NHS route as quickly as possible but call the Macular Society helpdesk to talk to them. They're very good at answering some of the questions you might have.

Regards

[andy1955 Macular Society]

Hello John,

Alina is quite right, private treatment for the wet type of macular degeneration (MD) is very expensive.

Please see our information booklet on treatments at the following link;

macularsociety.org/How-we-h...

It would appear from your short message that your MD is fairly early and if treatment is appropriate it should be given promptly.

I suggest, as Alina did, that you call our helpline 0300 30 30 111 to discuss your options.

Best wishes

Macular Society

Helpline

[isherwoodjon]

29 05 2 013 12:44

Thank you alina & andy1 955 Macular society, for your very prompt answers.

Yes, it's wet-type AMD. Don't know at this early stage if it's ' better . than my sister's dry AMD. The whole atmosphere of my local, Nottingham, eye department was most reassuring.

I ask about private treatment as their accelerated actions may be that important just now.

Doubtless am asking the NHS people to advocate another service. Should there be anyone experienced with non-NHS AMD treatment I would love their outcomes & whether it was worth the extra.

Thank you

John Isherwood

[AlinaL in reply to isherwoodjon]

Hi John,

When I was offered private treatment it was the same injections that I was offered by the NHS, the only difference was that they'd treat me the next day but at a cost.

They are trying to develop new treatments but as yet I believe it's an injection or nothing. Some PCT's use Lucentis, which is more expensive for the NHS while others (like mine) use Avastin, as it's a cheaper alternative and they can treat more patients within their budget, although I believe they also use Lucentis with some patients (I've been comparing notes with fellow sufferers in the waiting room)

I had Avastin injections and they worked a treat. I was 45 yrs old and they think that my age has worked in my favour. After 3 injections the bleed stopped and my sight has been stable since April 2012. I was also very lucky as my lost vision was almost fully restored although I still have a distortion in my vision in that eye - I understand that this isn't the case for most people.

Hope that helps

Regards

[isherwoodjon in reply to AlinaL]

AlinaL

For now, thanks for this most helpful answer.

Just had my first Avastin injection. The consultant is so wonderful I am hooked on the NHS.

John Isherwood, 67 , Nottingham

Wet AMD in left eye. Dry AMD in right ! (As of 10 days ago.)

[AlinaL in reply to isherwoodjon]

Hi John,

So glad you've been treated quickly by the NHS... I'll keep my fingers crossed for a good outcome.

Best wishes

[isherwoodjon in reply to AlinaL]

Alinal,

Thank you for your encouragement.

I dread becoming as poorly sighted as you did. Your story is of hope.

Just ten days ago the world looked quite different.

This site has proved fantastic, such targeted comforting information.

John Isherwood

[AlinaL in reply to isherwoodjon]

My pleasure John,

I found this website and the helpline invaluable when i was coming to terms with my diagnosis.

I have a link to the questions page and if I think i can help I try to respond to questions, as i know how desparate you can feel when trying to find out about the condition and the treatment. It helps to feel connected with a community all dealing with the same problems.

Have a good day

Regards

Alina

[Debbiej]

Hi John I have dry ARMD .i see my consultantant private as I have private healthcare through work although at the begining bupa would pay for all consultations scans etc now this has stopped as there is no treatment for the dry type. They will only pay now if it changes to the wet type as this can be treated.although I have to pay for my consultations now I have so much faith in my consultant who does not see nhs patients that I feel why I can afford it I want to stay with her. I know if I needed to see her she would fit me in the next day if possible and she is happy to talk to me on the phone if I have any concerns

[isherwoodjon in reply to Debbiej]

Debbie,

For now, thanks for this most helpful answer.

Just had my first Avastin injection. The consultant is so wonderful I am hooked on the NHS.

John Isherwood, 67 , Nottingham

Wet AMD in left eye. Dry AMD in right ! (As of 10 days ago.)

[JKS44]

Hi John

Probably a bit late for you, but maybe this will help others facing the same dilemma....

I had my first Lucentis injection privately 3 years ago at a cost of £1200. I was lucky I could just about afford this as I had the misfortune to have a retinal bleed on a Friday evening just when the ophthalmology dept. at my local hospital was winding down for the bank holiday weekend. I'd already lost most of the sight in one eye 10 years previously (before any treatment was available) so was panicking about losing my sight in my remaining eye.

What made up my mind was the speed at which I would get that injection - I was being told by my consultant with his NHS hat on that I could be treated on the NHS when my Primary Care Trust had discussed me at their next monthly meeting & agreed funding (then 3 weeks away). But in his opinion that would be too long & my best chance would be for him to do the injection privately the next day.....

Part of me thought "Well, he would say that, wouldn't he?" as he'll make a tidy sum out of me if I go private, but I really couldn't take the chance of not having treatment ASAP.

I was offered Avastin privately (£700'ish) & although my consultant felt that both were excellent treatments, there was perhaps slightly more evidence for using Lucentis (& this is the only treatment my PCT will fund on the NHS). He was also as sure as he could be that I would get NHS funding later that month for further treatment (which I did). I was also worried that the PCT may have thought I could afford further private treatment myself as I'd already paid for 1 jab & that this may have gone against me at their funding meeting, but he assured me it wouldn't/

I've since had 4 further jabs on the NHS (couldn't afford them privately so very, very grateful) & the only difference I've noticed is that the tea comes with biscuits in the private hospital!

I can't praise my local ophthalmology dept. enough - they are amazing.

[isherwoodjon in reply to JKS44]

Dear JKS44,

Thank you for your advice. No, it is not too late at all. I am most grateful for personal information from people in just my situation.

It seems that going private was the best move when your 'good' eye was deteriorating.

I'm learning the pros & cons, thanks to you. As I've had such prompt, excellent treatment from the Health Service, I can just reiterate :

I can't praise my local ophthalmology dept. enough - they are amazing.

John Isherwood, Nottingham

[keefyp]

I have wet AMD in left eye. I have PruHealth cover through my company. After three Lucentis injections, PruHealth have said, "That's it, it is now a chronic condition".The private consultant says I need another four. I'm arguing this with PruHealth. They are making a financial decision, rather than a clinical one about when the problem moves from an acute to a chronic one.

So, the decision for me is:

a. Continue with current consultant and pay. It's £2,000 per treatment including Lucentis drug, consultant and hospital charges. Not cheap!

b. Continue with current consultant, switch to Avastin and pay.It's £1,300 per treatment. Still not cheap.

c. Go back to GP, ask for a new referral to an NHS consultant. This will be a different consultant because the guy I see privately doesn't do Lucentis/Avastin injections in the local NHS unit. A different consultant handles this.

What the private sector needs to come up with is a low cost, nurse practitioner led service for Lucentis/Avastin injections. Why do I want to go private? So that I can plan these injections (i know that it wont just be another four) around my job commitments.