Treatment - after you've gone blind
By Jayne Warren - 04/05/2007
A retired man with wet age-related macular degeneration (AMD) has been told by his local Primary Care Trust that he will have to go blind in one eye before they will treat him - even though sight-saving treatments are available on the NHS.
Leslie Howard, who spent a lifetime in devoted public service in the army, police and the prison service, is unable to afford private treatment and so faces losing his sight and becoming housebound.
Mr Howard, from York, was diagnosed with age-related AMD in his right eye in November and could lose his sight in as little as three months. He urgently needs anti-VEGF drugs to save his sight but the PCT says it will only consider funding once he has gone blind in one eye and developed wet AMD in his second eye.
He said: “I’ve spent most of my working life devoted to public service and I’ve never failed to pay my dues. I’ve paid literally tens of thousands of pounds in taxes and to know that I will now lose my sight because I can’t afford private treatment is diabolical.
“Has the Government lost all sense of compassion as well as economics? Is there no way I can get help to save my sight? My wife and I have arthritis of the spine and if I lose my sight, we’ll end up housebound, and that will destroy us.”
AMD is the biggest single cause of blindness in the UK and the financial cost to individuals and society is an estimated £1 billion in the UK alone. Yet, although new treatments can help many people with the condition, most PCTs are currently not prepared to fund this - leaving patients having to pay for the treatment themselves.
Mr Leslie Howard was told that private treatment would cost up to £6,000, plus theatre costs, for the first year and that treatment can be required for more than a year.
Steve Winyard, Head of Campaigns at Royal National Institute for the Blind, said: “It’s unacceptable that older people can only save their sight if they can afford private treatment. The actions of the PCTs are simply unacceptable. There is a moral imperative to save the sight of people where we can. It also makes no economic sense to deny treatment. The cost of supporting people with sight loss far outweighs the cost of treatment.”
Tom Bremridge, Chief Executive of The Macular Disease Society, said, “The so-called ‘second-eye’ policy is wholly unacceptable on ethical and practical grounds. Not treating wet AMD in the first eye carries other dangers because patients have a high risk of developing the condition in the second eye. And if treatment is unsuccessful in the second eye, people may end up losing their sight in both eyes.”
A spokesman for Age Concern, York, told the Mature Times: “If Mr Howard was living in another area he may have been able to have NHS treatment. But the PCT in this area is in financial difficulties, having tried to meet national standards, cutting waiting lists, getting their star ratings and so on.
“The general public is paying the price. What really bothers me is that this man could get treatment if he was living elsewhere, which is wrong. There should be a standard quality of treatment across the nation. Why must Mr Howard pay with his eyesight?”
The North Yorkshire and York PCT told Mature Times that their decision complies fully with National Institute of Health and Clinical Excellence guidance where it exists.
“However there is no NIHCE guidance for the treatment of AMD with anti-VEGF drugs. In agreement with other PCTs in the region, North Yorkshire and York PCT has agreed to fund anti-VEGF drugs for patients for whom it has been evidenced that this will be an effective treatment. This is based on an assessment of the patients against an agreed clinical criteria established by the PCTs.
“If any patient feels they should be considered for treatment outside of the criteria the PCT has agreed a process to consider their individual circumstances.”
Mr Howard, it seems, despite the certain loss of his sight in one eye, does not fulfil their treatment conditions.