Charities unite in a battle to save Yorkshire pensioner's sight

09/04/2008

The Royal National Institute of Blind People (RNIB) and the Macular Disease Society (MDS) have joined forces to help an 81 year-old Yorkshire pensioner win a desperate battle to save her sight, as her local NHS trust is refusing to pay for the sight saving treatment she urgently needs.

 

Dorothy Lyon, from Gilberdyke, East Riding of Yorkshire, faces an agonising race against time to save her sight, following a refusal by East Riding of Yorkshire Primary Care Trust to pay for vital treatment that could stop her from going blind.

 

 

RNIB and MDS have taken up Mrs Lyon’s case and are now fighting the PCT’s decision.

 

Mrs Lyon has the sight threatening eye condition wet Age-related Macular Degeneration (AMD) in her left eye and dry AMD in her right eye. If left untreated, wet AMD can lead to blindness in as little as three months and is the leading cause of sight loss in the UK.

 

Mrs Lyon, who also suffers from angina and osteoporosis, says she will be devastated if her PCT lets her go blind. "The PCT is punishing me simply because I haven’t yet gone blind in one eye. It’s an absolute disgrace that patients are being robbed of their sight, especially when treatments are available. The thought of going blind scares me to death. I really can’t believe my PCT is abandoning me like this."

 

The distraught mother of four, grandmother of six and great grandmother of nine, added: "My family means the world to me. I’d be heartbroken if I couldn’t see their faces again. I hope the PCT will reconsider its decision before it’s too late."

Under East Riding and Yorkshire PCT’s funding policy, 80 per cent of patients with wet AMD are automatically excluded from treatment, with the remaining 20 per cent having to have lost the sight in their first eye, before being considered for treatment in their second eye.

 

Since July 2007, all 14 PCTs in the Yorkshire and Humber region have been using the same restrictive policy - developed by Yorkshire and Humber Strategic Health Authority (SHA) - to decide whether or not to fund AMD treatment for patients.

This means that the majority of patients from the Yorkshire and Humber region are being forced to choose between losing their sight or raiding their life savings. However, for many patients like Mrs Lyon, paying for private treatment is not an option.

 

Despite an urgent application for funding from RNIB and Mrs Lyon’s ophthalmologist, the PCT is refusing to fund her treatment.

Fearing that the wet AMD will spread to her left eye, Mrs Lyon has now been forced to make a desperate appeal to the PCT’s Exceptions Committee to prove she needs treatment.

 

RNIB Campaigns Manager, Barbara McLaughlan, said: "This is a terrible situation for Mrs Lyon to be in. The clock is literally ticking to save her sight. How many more patients must go blind before PCTs in the region finally see sense and make wet AMD treatment widely available?"

Barbara added: "PCTs should stop hiding behind an outdated policy, based on draft recommendations issued by NICE in June last year. NICE is now saying that treatment should be provided to all patients who need it and PCTs must implement this decision immediately, instead of waiting for final guidance."

The National Institute for Health and Clinical Excellence (NICE) announced last week (2 April) that everyone in England and Wales could soon receive sight-saving drug Lucentis on the NHS. In their long awaited Final Appraisal Document (FAD) the drug rationing body said all PCTs in England and Local Health Boards in Wales will soon have to fund Lucentis for patients with wet AMD, whether their first or second eye is affected.

The FAD is a clear preview of NICE’s final decision - due later this year - and means PCTs will no longer be able to use restrictive funding policies to decide who gets funding.

 

Some PCTs have already adopted the latest NICE guidance, but others, such as East Riding of Yorkshire, have refused to do so, instead choosing to wait until final guidance is issued later in the year.

Tom Bremridge, Chief Executive of the Macular Disease Society, said: "This is a disgraceful way to treat Mrs Lyon and is clearly causing her considerable distress. Given the extra cost of supporting people who go blind, PCTs are mistaken in thinking they will save money by denying patients treatment for AMD."

 

RNIB and the Macular Disease Society have an advocacy service called Action for AMD Treatment. Any patient needing help accessing licensed anti-VEGF treatments should call RNIB's Helpline on 0845 766 9999 or the Macular Disease Society Helpline on 0845 241 2041.