My poor Nan has macular degeneration

snuffalilly

My poor nan is 87 years old.She lives alone and is on income support.She has just been diagnosed with macular degeneration and has been told by her consultant that she could lose her sight at any time.She has been told she may benefit from having injections in her eyes.Unfortunately, these are not done on the NHS so she has been advised they would cost £500 each.To add insult to injury, the doctor said if she lived in Scotland, it would all be free:mad: .
Does anyone have any advice or know if she would be entitled to any financial help.We are all really worried for her.
Thanks.

candygirl

My Great Aunty also has this, and it is so bad that she has been registered blind.Not sure what benefits she gets but she does get some, I am not asking cos she's too proud to talk about money.Think it could be attendance allowance.The Citizens advice are good for benefit queries , as are welfare rights

Fat_Boy

Hi snuffalilly, I can't offer any advice but my fiancee is the best looking (;)) Optomotrist in East Anglia so I'll send her a link to this thread and maybe she can offer some advice this evening when she gets back from work.

All the best

snuffalilly

Thank you Fat Boy.....that is really kind.

seven-day-weekend

Does your nan claim attendance allowance?

http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10012425

Might give her a bit more income if she has to pay.

margaretclare

Hello, and sympathy to you and your Nan

Her doctor is correct, although it was an insensitive thing to say.

There are a number of medications which are not approved for use in the NHS in England. NICE - the National Institute of Clinical Excellence - is the body that has the say-so in England.

There have been other heartrending examples of this. One was a war hero who was using savings to pay privately for the treatment, but he and his wife were both affected, savings were running out and they were having to decide which of them should go blind and which not.

Another example is of medication for Alzheimer's sufferers in the early stages. A further one is the breast cancer medication.

I think that the 'Daily Mail' and 'Daily Express' are interested to hear of these kind of cases. In addition, I would write to your Nan's MP.

Best wishes

Margaret

wishiwasarichgirl

Fat_Boy wrote: »

Hi snuffalilly, I can't offer any advice but my fiancee is the best looking (;)) Optomotrist in East Anglia so I'll send her a link to this thread and maybe she can offer some advice this evening when she gets back from work.

All the best

Gonna have to teach you how to spell optometrist though


Hi Snufalilly,
Sorry to hear about your nan, AMD is a horrible condition, and in my experience some consultants can be extremely insensitive and unnecessarily pessimistic when describing the possible prognosis.

Firstly, your nan will not go completely blind, as mac. degen only affects the central vision. Many sufferers can learn to use their peripheral (side) vision, and manage very well once they adjust to the change.

There are a couple of new treatments available, involving injections into the eyes, but as the consultant said, they are expensive, and it is a postcode lottery as to whether you can get them on the NHS. I don't think being on benefits will entitle your nan to any help towards the cost of the treatment if she goes private unfortunately. Also, none of them are guaranteed to actually improve the vision or cure the condition.

It may be worth asking the consultant if there are any clinical trials of the new drugs which your nan would be eligible for, although the criteria for many of these trials is quite strict.

It's also worth checking every few months whether the treatments have become available on the NHS in your area, as there is an ongoing battle to make them available to everyone.

There is lots of support available for patients & relatives of those with AMD: The Macular Disease Society (UK Charity)
The College of Optometrists
AMD Alliance International (mostly USA based info)
Royal College of Ophthalmologists (PDF Download)
RNIB.org.uk (no link as the webpage appears to be down at the min)
Local social services can help if your nan has been registered as visually impaired - they can suggest changes and tools around the house to make day-to-day life a bit easier.


hope this helps a bit!


Wiggly. Best looking optometrist in East Anglia (allegedly )

snuffalilly

wishiwasarichgirl wrote: »

Gonna have to teach you how to spell optometrist though


Hi Snufalilly,
Sorry to hear about your nan, AMD is a horrible condition, and in my experience some consultants can be extremely insensitive and unnecessarily pessimistic when describing the possible prognosis.

Firstly, your nan will not go completely blind, as mac. degen only affects the central vision. Many sufferers can learn to use their peripheral (side) vision, and manage very well once they adjust to the change.

There are a couple of new treatments available, involving injections into the eyes, but as the consultant said, they are expensive, and it is a postcode lottery as to whether you can get them on the NHS. I don't think being on benefits will entitle your nan to any help towards the cost of the treatment if she goes private unfortunately. Also, none of them are guaranteed to actually improve the vision or cure the condition.

It may be worth asking the consultant if there are any clinical trials of the new drugs which your nan would be eligible for, although the criteria for many of these trials is quite strict.

It's also worth checking every few months whether the treatments have become available on the NHS in your area, as there is an ongoing battle to make them available to everyone.

There is lots of support available for patients & relatives of those with AMD: The Macular Disease Society (UK Charity)
The College of Optometrists
AMD Alliance International (mostly USA based info)
Royal College of Ophthalmologists (PDF Download)
RNIB.org.uk (no link as the webpage appears to be down at the min)
Local social services can help if your nan has been registered as visually impaired - they can suggest changes and tools around the house to make day-to-day life a bit easier.


hope this helps a bit!


Wiggly. Best looking optometrist in East Anglia (allegedly )

Thank you so much.Im off to look at some of the websites you have mentioned.

Errata

Watchdog to review its restrictions on blindness drugs

• Guardian, Thursday August 9 2007
• Ian Sample, science correspondent

Major restrictions on the use of drugs to combat blindness are to be reviewed by the health watchdog following protests from doctors' and patients' groups. The National Institute for Health and Clinical Excellence (NICE) will re-examine the cost-effectiveness of two drugs after pleas from groups including the Royal College of Nursing and the Royal College of Ophthalmologists

Things may be looking up.

Ted_Hutchinson

Increased Risk Of Age-Related Macular Degeneration From Gene Variant says "Researchers have found a gene variant that can more than double the risk of developing the degenerative eye disease, age-related macular degeneration."

It follows that people with a higher risk should take as much preventative action as possible. Antioxidants, such as vitamin E, C or zinc, clearly have a protective effect in AMD and probably in cataract. In addition, two carotenoids, lutein and zeaxanthin, may play a more specific role in the eye

Most vitamins are best absorbed from food sources or nature equivalent forms. I find the information at World's Healthiest Foods generally reliable.

You will see from Nutrition and Macular Degeneration that consumption of omega-3 fatty acids, which are particularly prevalent in cold-water fish, also had a protective effect against advanced macular degeneration. Meanwhile, consumption of omega-6 fatty acids, prevalent in vegetable oils, was associated with an increased risk of developing AMD. As that last article shows "Hypertension" as a risk factor for AMD and Higher Blood pressure is related to lower vitamin D3 status it follows that having optimal Vitamin d status throughout the year may be protective of AMD (it certainly is for cancer)

For more information (and links to suppliers of effective strength D3 Cholecalciferol) The Vitamin D Council.

Potential role of dietary n-3 fatty acids in the prevention of dementia and macular degeneration.

Association between vitamin D and age-related macular degeneration in the Third National Health and Nutrition Examination Survey, 1988 through 1994.

foreign_correspondent

Dont know if this is any help, but I saw a bbc programme a couple of weeks ago which said eating spinach regularly could help macular degeneration - they made a lady eat some spinach every day for awhile and found that her eyes had improved...
http://www.bbc.co.uk/sn/humanbody/truthaboutfood/young/spinach.shtml

Spinach is easy to prepare, and can be bought fresh, or in a can or jar, or frozen in chunks which is probably most convenient for one person if she has a freezer or ice compartment.

Perhaps the hardest thing is finding varied things to do with it! It is ok as a green veg on a dinner, or good in anything cheesy or creamy!

I have just searched this and seen that eggs are good too - could your gran eat a spinach omlette or two occasionally?Best wishes, I expect she is worried about losing her independance, but it seems that this is quite a common condition and that steps can be taken to slow it down.

I hope she get the injections, but in the meantime perhaps the spinach could be helpful... at least you know it is a healthy veg and cant do any harm, so there's nothing to be lost by trying it!