CampaignsHealthcare RationingAMD TreatmentCouple forced to decide: which one of us will go blind? Couple forced to decide: which one of us will go blind?
07/03/2007
The Royal National Institute of the Blind (RNIB) say they are outraged that the NHS is forcing an elderly couple – both diagnosed with a condition that can lead to blindness – to choose which one’s sight should be saved.
Olive Roberts, 79, from Malmesbury, Wiltshire, was diagnosed with wet age-related macular degeneration (AMD) on Boxing Day 2006. Her husband, ex-civil servant Ron, 81, was diagnosed with the same condition just one week later.
Wet AMD is the leading cause of sight loss in the UK and it can cause people to go blind in as little as three months. People need prompt treatment if they are to minimise their risk of permanent sight loss.
NHS patients Mr and Mrs Roberts were told they needed urgent treatment with anti-VEGF drugs – but if they wanted treatment quickly, they would have to pay for it privately, even though the drugs are licensed for use on the NHS.
Pensioners Mr and Mrs Roberts can only afford private treatment for one of them – it costs more than £600 each month for the drugs, and treatment is ongoing. Forced to choose whose sight they should save, the couple decided that Mrs Roberts should have private treatment because her sight is deteriorating faster.
The couple has applied to the PCT for funding, and although prompt treatment is critical, two months on, they have yet to hear whether their treatment will be funded.
If the NHS should refuse funding, Mr Roberts faces the prospect of going blind to a treatable condition.
Mr Roberts says, "There aren’t really the words to sum up our situation. As it is, I could lose my sight because we can only afford private treatment for one of us. Because Olive was losing her sight so quickly, we decided that she needed the treatment first – but we can’t afford her treatment forever. We know the NHS doesn’t have a bottomless pit of cash but we have only one small pot of gold between us."
Mrs Roberts says, "It’s not an exaggeration to say that I’m worried, for myself and for Ron. What sort of a future do we face? Blindness or the loss of the financial security we’ve worked all our lives for.
"It’s so frustrating that there are treatments available but we can’t get hold of them when we need them. We want to be treated on the NHS quickly, and we want others with wet AMD to be able to get treatment quickly."
Steve Winyard, Head of Campaigns at RNIB, says, "This is a desperate situation for Mr and Mrs Roberts. They have literally had to decide whose sight they will try and save.
"But, frustratingly, this is just one of many cases where older patients are being forced to use their retirement funds to pay for sight-saving treatment that should be available readily on the NHS. Every day people with wet AMD tell us that their PCT is refusing to fund sight-saving treatment. In some cases, patients are using their life savings to pay for private treatment – in cases where people can’t afford private treatment, patients face the prospect of going blind unnecessarily.
"RNIB has been campaigning for PCTs to fund sight-saving treatments for wet AMD. The latest figures suggest that 80 per cent of PCTs are failing to fund anti-VEGF treatments. Even when they do provide funding, it is for very low numbers of patients. Very often, patients also have to fight to get 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."