Press Centre

NHS leaves employee to go blind

Summary: NHS nurse fights for sight saving treatment

• Further Information
• Notes to editors

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18 May 2007

A widow who has worked for the NHS for 18 years faces blindness in one eye because Dorset PCT has so far refused to give her sight saving drugs, the Royal National Institute of the Blind (RNIB) is outraged to learn.

Sylvie Webb, 58, from Salisbury, was diagnosed with wet age-related macular degeneration (AMD) in her left eye in February 2007. Wet AMD can lead to blindness in as little as three months and people need prompt treatment if they are to minimise the risk of permanent sight loss.

Mrs Webb needs anti-VEGF drugs to save her sight but her PCT has not provided the treatment, saying it has yet to formulate a policy for the treatment.

This is despite the fact that PCTs should have known since 2002 that anti-VEGF drugs were on their way, and that two treatments are now licensed for use on the NHS.

Mrs Webb says, “In February, my consultant asked for a ‘rapid response’ to my request for treatment because my sight is deteriorating ‘day by day’ and ‘it is difficult to improve vision once it is lost’. At the time, the PCT said it hadn’t got a policy and it would address the situation in April – but it has now postponed this until June. I’m extremely worried that time is running out for me and other patients.

“I’m a young woman and want to carry on working, and then I’d like to do all the things I had planned for my retirement. I’m also worried about the health of my other eye. I know I’m at increased risk of getting wet AMD in that eye and this could mean I end up losing my sight. The women in my family live into their 90s; I can’t accept the possibility of being blind unnecessarily for the next 35 years. Also, surely it will cost the government more to let me go blind than to save my sight?”

Steve Winyard, Head of Campaigns at RNIB, says, “This is disgraceful. Some anti-VEGF treatments for wet AMD have been licensed for a year now and PCTs knew they were coming. They should have been ready to give them to patients.

“It’s little comfort for Mrs Webb that she can’t get treatment simply because her PCT has yet to decide a policy. The PCT needs to get its act together and ensure these drugs are available to patients now and without a struggle.

“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, says, “It’s well known that an eye with wet AMD can go from good to useless in three months. For Dorset PCT to delay decision making from April to June is negligent and disgraceful. It is outrageous that in this day and age Mrs Webb faces losing her sight owing to bureaucratic idleness.”

Further Information

For further media information, photos or to interview Mrs Sylvie Webb or an RNIB spokesperson, please contact Deirdre Good, Christina Nicolaidou or Paul McDonald, RNIB Press Office, on 020 7391 2223 (out of hours mobile: 07968 482812).

Notes to editors

• Every day another 100 people will start to lose their sight. There are around two million people in the UK with sight problems. RNIB is the leading charity working in the UK offering practical support, advice and information for anyone with sight difficulties. If you, or someone you know, has a sight problem, RNIB can help. Call the RNIB Helpline on 0845 766 9999
• Mrs Sylvie Webb’s PCT is Dorset PCT. Mrs Webb is a secretary at Wiltshire PCT.
• In 2002 the National Horizon Scanning Centre issued its first report about the anti-VEGF drug Macugen. The work of this centre ensures that PCTs have access to early information about new drugs that are likely to be introduced over the next few years.
• Anti-VEGF treatments target VEGF (vascular endothelial growth factor), a protein involved in the formation of new blood vessels. In the eye, high levels of VEGF can cause proliferation of blood vessels and fluid leakage. The number of times patients require treatment with an anti-VEGF drug varies – some patients require injections for two years or more.
• Each year 26,000 people in the UK develop wet AMD. Approximately a quarter of a million people in the UK are thought to have the condition.
• RNIB campaigns 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.
• RNIB and The Macular Disease Society have launched an AMD advocacy service called Action for AMD Treatments. Any patient needing help accessing licensed anti-VEGF treatments should call RNIB’s Helpline on 0845 766 9999.

Content author: pressoffice@rnib.org.uk

Last updated: 08/04/2008 18:38