Age Macular Degeneration and Attendance Allowance

You have up to one month to challenge the decision by asking for a Mandatory Reconsideration. This means asking them to look at the decision again. If this fails, you can go to Tribunal, which is free.
It may help if you look st the criteria for AA to see exactly where your mother might qualify.

They wouldn't usually do a cataract operation on someone with AMD in its wet form, in the dry form they might. Wet AMD carries a risk of haemmorhage during cataract surgery and can cause huge problems and loss of vision.

Is the hospital offering any treatment at the moment? Injections or implants or regular monitoring? That would indicate wet AMD which is highly degenerative, dry AMD is much more stable and doesn't usually get monitored as it can't be treated.

The conditions are looked at differently as wet is degenerative and hard to manage and dry is "one of those things" that comes with age.

Either way I would get the sensory team back out and ask them to assess for magnifiers and aids for the kitchen.

Make sure someone goes to the hospital appointments and the hospital are aware of how bad it is. We get elderly people in with severe wet disease who just sit and say "oh yes nurse, it's all about the same nurse, wouldn't want to bother the doctor, I can cope etc" and it takes a family member to pull us aside and say "mum doesn't want to worry doctor but she can't read any more and we are scared to leave her alone as she won't even make a cup of tea". We can discretely make notes and the doctor will then have a word about more dramatic treatments or getting in help or even considering big things like getting the cataracts out as the quality of life can't get much worse than being unable to leave the living room. It also helps when the DWP write in as its on records that the nursing staff have concerns about the patients independence.

spiritus wrote: »

I'd forgotten I started this thread:(

To our knowledge my mother has the dry form of AMD but she doesn't get monitored at all other than an annual visit to her local optician. if she has problems in between she can have an early test. Make sure mum is aware that any sudden changes in vision should be seen by a community optom ASAP and it's not bothering anyone to push for an emergency appointment

My understanding is that Dry Eye AMD can develop into Wet Eye AMD and only being seen once a year doesn't inspire me with confidence that a change in diagnosis can quickly be identified. this is quite rare but make sure your mum is attending the optician, if she's ever too ill to get to the optician they can arrange a home visit.

I strongly feel that she's been left to her own devices in managing this condition with a leaflet thrust into her hand about local support (although she couldn't of course read the leaflet).

She has received some vision aids from a local support group but I have never been there at the time they visited which is something I will address going forward.in some areas this is how it works and in other areas the NHS or local opticians give out the vision aids. If the aids aren't working you should ask mums GP for a referral to the local low vision service.

For many years her previous opticians would prescribe her new glasses when in fact it wasn't the glasses at fault but her AMD. ive heard of this happening, not something I'd do personally though a lot of patients insist on new glasses because in most people's head glasses fix eye problems and we're just being difficult by not prescribing

In the last month she has been diagnosed as having Global Arteritis and is taking steroids to control it but this unfortunately has the added side effect of making her already failing vision blurry.

Our previous appeal for attendance allowance was rejected and I feel angry that there is no direction or advice given to her/us as to what help she may be entitled to either through support or financial benefits.

I am very supportive towards her and help her enormously, more and more each year but I worry how other elderly people without a support network of family and friends must be treated by medical staff. it's awful, we're not allowed to help applicants apply for benefits and can only intervene when the dwp write to us for a report and we can only report on what we know so if Mrs smith is telling us she's coping we can only say what the vision is and that when we last saw her she reported that she's coping well .

theres a few things you can try, asking her to be referred to the local low vision service is the first step.

There is a very recent surgery for dry AMD called eyemax, we don't do it up here but I've been told it's available in some areas in England. You could enquire about the availability in her area and how to get her on the waiting list (if she's willing to have surgery)

The macula society https://www.macularsociety.org/ can send her out a calendar with an amsler grid printed on every month to help monitor progression of her AMD, they can also put her in touch with local groups and possibly give you a referral to eccentric reading classes. Eccentric reading uses the edges of the visual field which are spared in AMD. It's taught in classes over a few weeks and the learner needs to practice for 20-30 minutes daily for the technique to properly work, I've seen some amazing changes in people who learn eccentric reading. You need a special eye test and glasses but these tend to be heavily subsidised by the charities who run the classes.

If your mums in Edinburgh or Ayr she should contact the local eye hospitals and try to get on the Lampalizumab trial, there's no guarantee she'd get put in the treatment group but it's worth a shot.

An internet friend, younger as she's in her late sixties, had cataracts in both eyes and MD. She was getting to the point when she was struggling so was given the cataract op in one eye and she was thrilled by the improvement.


I suspect that she will have to wait to have the other done, as she has good vision in one eye now and some authorities are fobbing cataract patients off until they are really advanced.