Many of you may well have seen my previous post about my husbands wet AMD debacle.
We have discussed it and my hubby says
a) there are clearly not going to treat him to save his sight because the NHS cannot afford it - they have said that on the phone.
b) they wont give us any information so we dont know what his state of amd is.
c) if we dont complain then the NHS will consider him a door mat and let him go blind ( sorry to be so blunt or forthright here)
d) if we do complain no doubt they will get a strop on and not treat him anyway.
Its a lose /lose.
What about private?
Neither of us have any experience of the NHS until this, ( we are not doctor botherers), let alone private.
a) How do we get a private appointment?
b) where do we go?
c) how much are these expensive injections likely to cost?
d) once you go private do the NHS wash their hands completely of you?
e) do we have to get a "sign off" from the NHS - at the moment if you recall he is in the position of no treatment, no information, no call back ( although office bod I got did say it was intended that they would review his deterioration in some in the future - undefined) .... just ignored.
I cant ask his ( so called) consultant - my husband only got to see him once ( his first appointment , when said consultant told him he would be treated with injections because his one eye had gone and this was his only eye ..... then we get he wont be treated from the NHS office bod because of cost and no letter, nothing).
And also, is it a good idea to treat early or not?
Any help would be most gratefully received. Thanks.
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abys
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Or at least is there anyway we could pay to see the consultant and get some information?
I would do my damnest to pay for this for my hubby if I can. Money in the bank is no use if you cant see.
Abys, please please complain to PALS. I did and it made all the difference. It will also help others.
With the different messages you have had from first consultant and office bod I suspect there has been an admin error on your hubbys file and they have mixed you up with another patient ( v rare but does happen - I work in the NHS and have had to sort this out myself for someone).
Call the Mac Soc and ask them to intervene for you.ASAP
Personally I would go to a&e today and start over again. They will have an on call Opthalmologist with access to your notes. May be the same one you saw before or different but you will get a new answer that will match the first or it will explain why the first was wrong.
I can't recall what they said hubby has but if treatment indicated then definitely sooner than later. NICE have timings hospitals should meet.
Private inj Lucentis are around £1000. I believe. I'm not sure how you find a Dr to do it but if local to you may well be the same NHS Dr!
Your gp can probably advise. Also, there may be a route under NHS via the " any qualified provider" system whereby you can go to another hospital for treatment. This is freely available as part of NHS Choice. Again. Gp can help with this.
You can return to NHS. I did on a separate issue.
The issue with going elsewhere is the new place will need hubbys notes which all takes time.
That's why I'd go to a&e and stick my ground.
Good luck to you both x
in reply to
Agree that is rock solid advice but, I would approach on several fronts, ie GP, A&E, PALS and a very strongly worded complaint to the Patient Trust..
I have heard some horror stories but that probably tops all. It is shocking on so many levels.
Please contact the Macular Society helpline for further discussion.
It would seem advisable to contact your husband's ophthalmologist via their secretary and establish why your husband has not been offered treatment. It would be worth asking if this is because he is outside of NICE guidelines for treatment on the NHS as his visual acuity is better than 6/12. I am attaching a link to a summary of the new NICE guidelines which were issues in January 2018 which refers to this issue in case it does apply:
If he is outside of NICE guidelines for treatment on the NHS, then the ophthalmologist can apply to the funding managers and request if they can use Avastin as an alternative. The Macular Society could also write a letter in support of the ophthalmologist's application.
Please contact us with the results of this phone call so that we can make suggestions as appropriate.
If necessary, we can give you details of private ophthalmologist's. If an individual does opt for private treatment, then it is not a barrier to them being transferred back to the NHS in the future.
Just to make you aware, the impact of the diagnosis of any eye condition and indeed any stage in the process is generally compared to experiencing bereavement. Individuals frequently go through very similar feelings and responses and in no set order. We do have a free telephone counselling service. Please contact us for further details if this is of interest. We need the individual’s verbal consent in order to be able to refer them. It takes a counsellor a maximum of a week to make the initial call. Our counsellors are fully trained and the majority have sight loss themselves. Sessions consist of approximately 6 of around 45-50 minutes each. I am attaching a link to our booklets on Emotional impact which references the counselling service and also our booklet, Supporting someone.
Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments. Please ring us if you would like to benefit from this, or join via the following link:
Thanks for the information. I have already joined the Macular Society. A very helpful man on your helpline has said he will be sending me some leaflets - the sort that we should have been given at the eye infirmary apparently.
My husband is devastated that he hasnt been sent a letter from the hospital. Even as late as yesterday after I had called and been told he would not be treated because of cost, he still thought he would be getting an appointment for the injections the consultant he saw at his first appointment - he was so clear about it that it has come as a shock .
(we havent seen a consultant since. His second appointment was where they took photographs of his retina with a view to getting the injections - he thought. Then he was just sent home and that was that).
We dont even have a name for a consultant. Apparently the man he saw at his first appointment told him he was a stand in for the day as the real consultant was not there - but the man still seemed to know his job and explained what he could, including his estimation that given catching it early meant they could probably deal with the condition and save his sight in his good eye. He suggested four injections would do it initially.
When I had to explain what I had been told when I rang up ( after two weeks of silence) he was in disbelief. I have said the macular society will help..... I have said we should complain to PALS and I have said I will call the Nuffield for information about private treatment on Tuesday . Monday is a bank holiday.
Its seems the whole thing has turned into a shambles.
He is afraid to complain because he thinks he will be highlighted and treated worse once he complains.
I personally would be happier if they had given him some information without me having to chase for it. Still we have nothing as such. No one has properly explained to my husband about the reasons for not treating him or told him anything about how bad his eyes really are ( or not). Or how active the condition is.
I have read now across the internet and it is clear that NHS rationing is something specific to some hospitals. I would like to know why £1000 an injection is "expensive" given how much the NHS spends on other things .....
Whats worst though is being stuck in a nowhere land - no letter, no consultant, no explanation beyond a wet macular "coordinator" looking up his notes and telling me my husband was not being treated because his eye was too good and it was too expensive for them.
Since we have no information, I am not even sure we can go private at this point. He is neither clear of the NHS nor being treated by them. Its a mess .
I think he would benefit from just talking to someone. If I can convince him I hope someone from the Macular Society helpline will be able to explain some of the things he has not been told by the NHS. But I wil have to see what he says. Right now he is mowing the lawn outside ( his way of doing his thinking).
I would suggest going private short term if you have the money to spend. Nice guidelines have only recently changed on too good to treat and most eye experts think you should treat immediately even if 6/6 vision. Wet amd happens quickly so getting the injections quickly would enable it to stabilise and give you breathing space. Within a week of diagnosis my mum had her first injection and after three it’s cleared the ‘leaks’ and her eyesight is still v good, fingers crossed
Dont get me wrong - we are not wealthy people by a long shot but we have saved over the years. No holidays , frugal lifestyle etc. so there is money in the bank and yes, we could "afford" it.
When the hospital woman said that the injections were too expensive for them to treat him , I immediately thought they must be £5000 /£6000 each or maybe more and that treatment would cost ( I dont know) £30,000 - or we might need a mortgage to pay for it.
But £1000 an injection + around £500 ( looking at the Nuffield website) for consultations etc. We can find that money - after all whats money worth if you lose your sight? 80% of everything comes in and is processed through your eyes.
I would make us afford it, even if I have to get a second job to do it and keep it up..
I've had three Eylea injections and have been told that since my eye has responded so well to it (i.e. the CNV has stopped) I'm to have just one more injection, i.e. a fourth, four weeks after the third (in two weeks this coming Monday). I think it's usual, and the suggested use by the manufacturer, to continue at two monthly intervals. I can't say that at the moment I'm totally unconcerned.
I went for what I thought was going to be my fourth and final injection but was told they didn't know why the doctor I had seen had arrange it like that.
So I didn't get an injection this time but am to get one four weeks on and then another three at bimonthly intervals, i.e. as per the Regeneron Eylea information sheet.
I am not going to comment on this as such but would say you are very very very fortunate that you have not had to be a ‘ doctor botherer’ and you have obviously enjoyed good health. If this is your first dealing with the NHS I would count myself as blessed indeed. Instead of tainting the NHS with one brush please think carefully about how much your hospital is to blame instead. I have countless things wrong with my eyes and not yet 50 ( Diabetes type 1, Macular oedema due to diabetes, cateracts, ocular hypertension, ptosis and double vision) and cannot praise my hospital enough and thus the NHS.
Can you google who in UK is the surgeon doing stem cell research on MD? That’s the doc I would want to see if I was in your husband’s situation ( which I am but in the USA) and I would waste no time about it because it can progress rapidly. From an article I read this procedure is yielding promising results there. Good luck!!!
I have read about that research. Its left me wondering if my husbands so called bad eye is so bad? He still has a little sight in it he tells me. I have also read that although the NHS will cast an eye off below a certain level, it might be possible that some function could be restored in that eye.
This is why we need information, communication, some sort of proper diagnosis and at the end of the day - why is the NHS are telling my husband what they have decided and have not discussed his condition wilth him or agreed any plan? ( according to their own web site and letters they should " discuss and agree treatment or no treatment....")
At the very least they could have told us about a private option surely?
By the way, my husband is convinced that all of this is because he isnt the right kind of person to be treated ( ie a nice professional man - he is a tradesman /plumber) or that he did something that made them decide he wasnt worth treating - or simply didnt like him. he is beating himself up over it.
Thanks to everyone for their support and the replies. They are most helpful.
Meanwhile, after reading on the internet, I have changed hubbies diet. He is now getting far more fruit ( of the yellow kinds) and lots of spring greens, .
I am doing all I can.
Not that his diet was unhealthy before.
I read all the so called lifestyle factors that are supposed to be linked to this but my husband has none - never smoked or drank, never really overweight, not even anyone in his family who has had the condition. I just donty know what we have done wrong for him to get it .
You say "what we have done wrong for him to get it" - probably nothing, or maybe a few things. My worst choices in life included smoking. It is indicated as a possible factor -so maybe I *did* do something that lead to my getting wet AMD. But appears it is a combination - genetics and environment. This link is a very technical, detailed study -published in 2016. We may not be able to understand all the technical jargon, but if we read slowly, we can gain some better understandings. ncbi.nlm.nih.gov/pmc/articl...
I just started treatment, getting my 2nd eye injection last week. They did wait, in my case. I was diagnosed in January 2018, they checked me monthly, but did not do 1st injection until March 28, 2018, when it was obvious it was worsening.
I don't have to deal with the NHS here in the US, but my charges for Lucentis injection on March 28, 2018 in $ US dollars are below. Be aware, this would be private pay charges, discounts are applied later
Retina scan- $180
Injection service [doctor, nurse, numbing meds, drops,etc]- $1239
Lucentis Prefill syringe Dose 0.5 x 5 units[$600 per unit] - $3000
I am on Medicare, the national medical coverage for seniors here in the US - they get discounted rate. I also pay for private medical insurance coverage. After those 2 entities paid their part, I was left with a private copay of $400 for one injection.
NOW here comes the sneaky, questionable part..... when I began treatment, I was given a letter that told me to call a phone number for help with copay costs. As $400 per month would add up quickly! That phone number was to Genentech, the manufacturer of Lucentis. they gave me another phone number, to a "Chronic Disease" charity. I then spoke to them, and was given a grant to pay $370 of each injection, that leaves me $30 each injection. Later research reveals these charities are usually established by the drug manufacturing company themselves. By doing this to help people pay some of the cost, it keeps the high drug cost out there - to the drug company's benefit. As always, money is the bottom line.
Just an update. I rang the private Nuffield hospital today ( its the second time I have called - they first time they said they would call back but didnt). Today I found out that injections will cost £1842 each + other consultation costs.
I didnt say anything about what had happened other than we had been told. I just enquired about the cost and what the process was.
I was also told that they would prefer it if my husband saw the same consultant that he had at the NHS hospital ( but that was difficult because we didnt know who that was!) .
They were polite but I still got the feeling they wanted to put us off. The secretary said that I should sit down because the injections were very expensive and I could be looking at £10,000. Since when has anyone decided on the phone whether someone can afford that or not ( btw we could if it saves his sight).
I just get the feeling that life is against us right now. No one actually wants to treat this condition ( wet AMD). Am I missing something here?
I am sorry if it is not the done thing to resurrect threads. I just thought I would update this rather than posting again.
So, my husband went to the Eye Infirmary on 13th April 2018.
The Eye infirmary were less than helpful and the so called " macular co ordinator" said they would not treat him because the injections were too expensive and he would need to be blind first...… then I looked at the private option.
Well, now we have seen the consultant and he has written to my husband . He says that my husbands left eye is actually healthy and doesn't need treatment. He will monitor it to ensure it stays that way .
I relief and a grand outcome. But the fact remains that we were given the run around, left high and dry by the NHS, given wrong information and left worrying for over two months after he was first told anything at all. Had I not made mega efforts, I wonder if we would have ever been told anything at all.
Which does make me wonder about that right eye and whether it can be treated and whether we are just not getting told. I cant trust anyone anymore.
Thank you to the Macular Society for all their help and support and giving me consultant names to arrange to see.
He has an appointment for monitoring on 4th July. Lets hope all is well. I don't want to go through any of this again. Hubby has done nothing but sit and stare into space for eight weeks now.
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Where do I go from here?
MACULAR EDEMA & AVASTIN INJ
New treatment for wet AMD available in Scotland
As my wet amd is getting worse every day i am wondering if this is normal or if i am just unlucky?
