Woman losing her fight for sight as Kingston says "no" to sight saving treatment

30/04/2008

The Royal National Institute of Blind People (RNIB) and the Macular Disease Society (MDS) have joined forces to help a 69 year-old pensioner who is battling to save her sight, as her local NHS trust has said it will not pay for the sight-saving treatment she urgently needs.

Mary White, from Surbiton, Surrey, faces an agonising race against time to save her sight, following a refusal by Kingston Primary Care Trust to pay for vital treatment that could stop her from going blind. RNIB and MDS have taken up Mrs White’s case and are fighting the PCT’s decision.

Mrs White has the sight threatening condition wet Age-related Macular Degeneration (AMD) - in both eyes. If left untreated, wet AMD can lead to blindness in as little as three months. She has already lost the sight in her left eye and risks going blind unless Kingston PCT agrees to fund her treatment.

A devastated Mrs White, who also suffers from cataracts and has now had to stop driving said: "I’m outraged that the PCT is turning its back on me when I could go blind. This is an appalling way to treat patients, especially when treatments are available. I’ve already lost the sight in one eye and the AMD has spread to my other one. But this is still not enough for Kingston PCT."

Mrs White added: "The thought of not being able to see the faces of my children and grandchildren again absolutely terrifies me. The PCT has completely turned my world upside down. I just hope they have a change of heart before it’s too late for me."

Fearing that she will soon go blind, Mrs White has been forced to drain her life savings and has already spend over £8,000 on private treatment. But with the money fast running out, this is no longer an option for her, leaving her at the mercy of the PCT.

RNIB Campaigns Manager, Barbara McLaughlan, said: "If Mrs White is not an ‘exceptional case’, I’d like the PCT to tell me who is? By hiding behind an outdated and restrictive funding policy, Kingston PCT is needlessly putting the sight of patients in their care at serious risk.

Barbara added: "The PCT is holding patients like Mrs White to ransom as they face a stark choice – either pay for private treatment or risk blindness. This is a terrible situation for Mrs White to be in as the clock is literally ticking to save her sight and she just can’t afford to continue paying for treatment privately.

"The PCT must review its decision immediately and agree to treat all patients who could benefit from sight-saving treatment – as recommended by NICE."

Kingston PCT has said it will only pay for treatment in ‘exceptional cases’. This is forcing patients like Mrs White to prove ‘exceptional circumstances’ to qualify for treatment – a process that can be long and incredibly stressful.

The PCT’s funding policy directly contradicts draft guidance recently issued (2 April 2008) by the National Institute for Health and Clinical Excellence (NICE). In their long awaited Final Appraisal Document (FAD) the drug rationing body announced that all Primary Care Trusts in England and Local Health Boards in Wales will soon have to fund the sight-saving drug Lucentis for patients with wet AMD – whether their first or second eye is affected.

While some PCTs have already adopted this guidance others, such as Kingston PCT, are refusing to do so, until final guidance is issued later this year.