Eye treatment fears

"We're hearing from more and more people who have been told that they can benefit from the treatment, but that their Primary Care Trust is refusing to help them." Steve Winyard

Fading vision - are patients getting treatment on time?

Wet Macular Degeneration

Eyesight is one of the most important senses that we have, and losing our vision can have a devastating effect.

Inside Out has discovered that some health trusts will watch you go blind rather than fund the treatment that could save your sight.

Fifty people a day lose their eyesight because of age-related macular degeneration (AMD) - a condition that can cause blindness in as little as three weeks.

Drugs are now available which can treat AMD, but elderly people are being forced to fund expensive treatments rather than receive it on the NHS.

Treatment denied

A report published by the Royal National Institute for the Blind (RNIB) suggests that 90 per cent of Primary Care Trusts are refusing to pay for these treatments.

The black spot on this eye reveals AMD

Steve Winyard from the RNIB says:

"We're hearing from more and more people who have been told that they can benefit from the treatment, but that their Primary Care Trust is refusing to help them.

"So they are faced with that awful choice of having to raise cash, otherwise they will go blind."

Feeling cheated

Dieter Klander was diagnosed with AMD.

He was left with no alternative but to pay privately for Lucentis, a drug which is costing him around £2,000 per injection:

"It seems inconceivable to go blind when there is treatment available that stops that process.

"I feel personally cheated and I think everybody else who's got this ailment feels cheated."

Paying for treatment - Cecilia Olesen

Cecilia Olesen was also diagnosed with the disease and was refused treatment on the NHS.

Unable to afford £2,000 for the drugs she needs, Cecilia is paying for a cheaper drug called Avastin, an unlicensed drug which has never been properly tested:

"I'd much rather have a drug that's been tried and tested.

"It's devastating to think that you have paid into the system all these years, and now when you need it you can't get any help."

Paying for healthy eyes

Professor Andrew Lotery, a top Ophthalmologist, told Inside Out that he's angry that patients are being forced to pay for this vital treatment:

Professor Andrew Lotery - keen to make drugs freely available

"The National Health Service as I understand it should be free at the point of access and there shouldn't be a postcode lottery.

"So I'm very keen for these drugs to become available on the NHS as soon as possible."

Although the Government is still assessing these new drugs, the Department Of Health says this is not an excuse for refusing free treatments.

Links relating to this story:

• BBC Health - AMD
• Department of Health
• RNIB
• Macular Disease Society
  

AMD fact file

Check the facts on AMD and find out how to get help

The macula is a tiny area at back of the eye at the centre of the retina.

It is responsible for what we see straight in front of us, enabling us to view fine detail as well as our ability to see colour.

Macular degeneration results when the delicate cells of the macula become damaged and stop working.

Early onset macular degeneration is a genetic disease - called Best Disease or vitelliform macular degeneration.

Middle onset macular degeneration (age 5 to 20) is also genetic - commonly called Stargardt's Disease or macular dystrophy.

Myopic macular degeneration may occur in severely nearsighted people.

If the condition occurs later in life, it is called age-related macular degeneration or AMD.

AMD is the most common cause of poor sight in people over 60.

The exact cause of AMD is not known but several risk factors have been identified including old age, smoking, genetics and nutrition.

AMD can be dry or wet in type - and often begins in one eye

There are two main types of AMD - wet and dry. The dry form is the most common - it develops very slowly causing gradual loss of central vision.

Wet AMD stems from new blood vessels growing behind the retina, causing bleeding and scarring, which in turn can result in sight loss.

MD frequently begins in one eye - the other eye may then become affected.

Wet AMD can develop quickly and can sometimes respond to treatment in the early stages.

AMD is not painful, and very rarely leads to total blindness.

Early symptoms include blurred or distorted central vision and light sensitivity.

If you think you may have AMD visit your optometrist or doctor who will refer you to an eye specialist.

More treatments for wet AMD are likely to become available in the near future.

Help at hand:

Contact the the RNIB Helpline - 0845 766 9999 or email helpline@rnib.org.uk

The Macular Disease Society has local groups and a telephone counselling service - 0845 241 2041.

Royal College of Ophthalmologists - 020 7935 0702.

Source: Royal College of Ophthalmologists, Macular Disease Society and Royal National Institute of the Blind.

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