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  • FIRST POST
    • spiritus
    • By spiritus 6th Feb 16, 11:49 PM
    • 547Posts
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    spiritus
    Age Macular Degeneration and Attendance Allowance
    • #1
    • 6th Feb 16, 11:49 PM
    Age Macular Degeneration and Attendance Allowance 6th Feb 16 at 11:49 PM
    My mother is 87 and suffers from Age Macular Degeneration in both eyes as well as cataracts.

    Her independence is slowly being eroded away and she calls upon me to help her with an increasing number of tasks. I do not mind doing this at all but recently a friend of hers suggested my mother should try to claim attendance allowance as she believes my mum could be eligible.


    My mum can't read newspapers or books anymore or her mail. She struggles with operating her washing machine, microwave and oven and has had people from our local Sensory Centre to apply bump stickers to some of her appliances.


    She regularly needs my help in reading her medicine prescriptions and I take her shopping weekly to read the packaging to her around the supermarkets.


    I have explained all of this plus other difficulties in her claim form but today she received a letter of rejection and I wondered if perhaps my mum has been too optimistic believing she may get Attendance Allowance.


    I have read other sites dedicated to Age Macular Degeneration and the general consensus is that many sufferers are eligible for this benefit.
Page 1
    • Newly retired
    • By Newly retired 7th Feb 16, 1:46 PM
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    Newly retired
    • #2
    • 7th Feb 16, 1:46 PM
    • #2
    • 7th Feb 16, 1:46 PM
    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.
    • Newly retired
    • By Newly retired 7th Feb 16, 1:57 PM
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    Newly retired
    • #3
    • 7th Feb 16, 1:57 PM
    • #3
    • 7th Feb 16, 1:57 PM
    Page 6 of this document may help you to focus on the aspects which will help you mother to qualify.
    http://www.ageuk.org.uk/Documents/EN-GB/Information-guides/AgeUKIG49_attendance_allowance_inf.pdf?epslanguage =en-GB?dtrk=true
    If you don't get a statement of reasons for the decision you should ask for it, then you will see what to focus on.
    • vlad
    • By vlad 7th Feb 16, 4:27 PM
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    vlad
    • #4
    • 7th Feb 16, 4:27 PM
    • #4
    • 7th Feb 16, 4:27 PM
    I would ask AGE UK for help on your mums behalf with appealing the decision. AFAIK one of the major points of AA is needing help with medication.
    • HOWMUCH
    • By HOWMUCH 7th Feb 16, 8:38 PM
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    HOWMUCH
    • #5
    • 7th Feb 16, 8:38 PM
    • #5
    • 7th Feb 16, 8:38 PM
    Is you mum suitable to have a cataract operation?

    Is the ophthalmologist able to help you by supplying a letter ask at the hospital for a supporting letter.
    Last edited by HOWMUCH; 07-02-2016 at 8:43 PM.
    Why pay full price when you may get it YS
    • GlasweJen
    • By GlasweJen 9th Feb 16, 10:46 AM
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    GlasweJen
    • #6
    • 9th Feb 16, 10:46 AM
    • #6
    • 9th Feb 16, 10:46 AM
    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.
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    • spiritus
    • By spiritus 12th Jun 17, 5:27 PM
    • 547 Posts
    • 270 Thanks
    spiritus
    • #7
    • 12th Jun 17, 5:27 PM
    • #7
    • 12th Jun 17, 5:27 PM
    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.
    Originally posted by GlasweJen
    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.

    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.

    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.

    For many years her previous opticians would prescribe her new glasses when in fact it wasn't the glasses at fault but her AMD.

    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.
    • GlasweJen
    • By GlasweJen 12th Jun 17, 7:42 PM
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    GlasweJen
    • #8
    • 12th Jun 17, 7:42 PM
    • #8
    • 12th Jun 17, 7:42 PM
    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 .
    Originally posted by spiritus

    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.
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    • NeilCr
    • By NeilCr 12th Jun 17, 9:28 PM
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    NeilCr
    • #9
    • 12th Jun 17, 9:28 PM
    • #9
    • 12th Jun 17, 9:28 PM
    I have some contact with our local macular support group. They are very helpful and proactive. It might well be worth getting in contact with your local one (if you have one) to see what they may be able to offer you and your mum

    Maybe go to your local CAB for help with a new AA form - especially as she has a new diagnosis

    Good luck to you both. My partner has macular degeneration so I have huge sympathy for your mum
    • teddysmum
    • By teddysmum 13th Jun 17, 7:44 PM
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    teddysmum
    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.
    • spiritus
    • By spiritus 13th Jun 17, 9:55 PM
    • 547 Posts
    • 270 Thanks
    spiritus
    Thanks everyone. Does anyone know if Attendance Allowance can be paid for sufferers of Macular Degeneration ?

    From the questions asked of my mum last time it seems to be a case of if she can dress herself and go to the toilet herself then she's not entitled to any help
    No Unapproved or Personal links in signatures please - FT3
    • NeilCr
    • By NeilCr 13th Jun 17, 10:15 PM
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    NeilCr
    The answer is yes it can but it's not automatic

    AA is about the effect on the sufferer not the fact that they have a certain illness/disability

    I'd strongly suggest seeing your local CAB/advice centre for help and advice on the completion of a new AA application

    Some good guidance here

    https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/attendance-allowance/claiming-attendance-allowance/help-with-attendance-allowance-form/
    • Lorian
    • By Lorian 13th Jun 17, 10:18 PM
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    Lorian
    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.
    Originally posted by teddysmum
    I know someone who recently thought the same about opportunities for the second cataract op, and had the second done only about 4-5 weeks after the first, I'm not sure, it could be she stepped into a cancellation slot. She too was very pleased with the result.

    She also has MD (being managed)

    The thought of Attendance Allowance hasn't arisen as I don't think she'd qualify.
    Last edited by Lorian; 13-06-2017 at 10:22 PM.
    • teddysmum
    • By teddysmum 14th Jun 17, 5:16 PM
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    teddysmum
    I know someone who recently thought the same about opportunities for the second cataract op, and had the second done only about 4-5 weeks after the first, I'm not sure, it could be she stepped into a cancellation slot. She too was very pleased with the result.

    She also has MD (being managed)

    The thought of Attendance Allowance hasn't arisen as I don't think she'd qualify.
    Originally posted by Lorian


    It does seem to have stricter criteria than the benefits for younger people. For instance being unable to prepare meals counts for DLA and PIP , but for AA you have to have difficulty actually eating the meal (and it doesn't appear to matter if you can't prepare the meal).
    • kpwll
    • By kpwll 14th Jun 17, 9:43 PM
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    kpwll
    My Step-mother had this and was registered partially sighted by the consultant. Someone came out from either from RNIB or Age UK and helped fill in the forms to claim AA. She was successful.
    Good luck to you.
    • Profligate
    • By Profligate 17th Jun 17, 11:21 PM
    • 35 Posts
    • 38 Thanks
    Profligate
    Hi

    It sounds like your mum has care and supervision needs, (during the daytime if not nighttime as well?), and that is what AA is awarded for.

    As other PPs have advised - get advice from Citizens Advice - they can do a full benefits check to see if your mum's getting all she's entitled to, and can help regarding appealing against AA decisions.

    The fact that your mum got refused AA initially does not mean that it was the right decision. I would have a look at AA guidance from the CA or AgeUK etc to ensure the form is being filled out with as strong a case as possible.

    I'm going to repost the link that Neil posted above as it's useful: https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/attendance-allowance/claiming-attendance-allowance/help-with-attendance-allowance-form/

    Good luck
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