She supported the NHS – then it let her down

A two-year delay in approving a drug has cost one elderly woman her sight

(Ben Graville)

Kathleen Shaw makes her usual meal of bread and cheese, feeling her way from the kitchen into the lounge where she will force herself to eat a little. She used to enjoy cooking and loved to eat while sitting outside in her garden. But she's now a prisoner in her own home.

Mrs Shaw went blind in June, 18 months after she was first diagnosed with a curable eye disease. Her local hospital had refused to pay for a sight-saving drug until it was approved by the National Institute for Clinical Excellence (Nice).

Last week Nice ruled that the drug Lucentis should be prescribed on the NHS to treat "wet" age-related macular degenaration, which affects 26,000 new patients every year.

Like many of her generation, Mrs Shaw, 85, a retired primary school teacher from Kent, supported the NHS from the start, 60 years ago. But her beloved NHS did nothing when she became a victim of bureaucracy. The decision came too late for her. She gradually lost the sight in both eyes, while Nice spent two years deciding whether the drug was value for money.

In the time it took to make the decision, her life changed irrevocably. A healthy, independent woman who drove miles to visit her grandchildren is now groping around at home trying not to bump into the door frame.

When The Independent on Sunday first interviewed Mrs Shaw, last August, she was angry but remained hopeful. Bromley Primary Care Trust had rejected medical advice from an eye specialist and refused to pay for her treatment. It insisted on waiting for Nice's decision while other trusts around the country decided to go ahead and pay for the drug, which ophthalmologists were excitedly endorsing.

Mrs Shaw was certain the decision to pay for the drug would come in time to save her eyes. But despite help from the Macular Disease Society, both her appeals were rejected – and there was still no decision from Nice. Now she can barely see her own hands, and feels dejected.

Last week Mrs Shaw said: "I am so angry at Nice for taking so long and taking away my independence. I was there cheering on the NHS right from the start, but I have nothing to thank it for. I was a teacher for 35 years, paid all my taxes, and this is the first time I've ever really needed the NHS. Yet they have sat back and let me go blind."

Lucentis costs nearly £900 per injection and patients can need up to 15 monthly doses, though most need far fewer. It is expensive, but stops the majority of sufferers from going blind.

Nice has publicly apologised, but said it needed two years to consult and consider all the evidence. Mrs Shaw believes the Government would have stepped in had this been a younger person's disease.

"I truly believe this is political," she said. "The elderly are just not seen as important, so who cares about people like me?"

The Government instructs Nice to fast-track some new drugs, a process it introduced after delay in approving the breast cancer drug Herceptin led to widespread criticism of Nice. But thousands of patients waited years before new treatments for Alzheimer's and brittle bone disease were finally approved.

Tom Bembridge, from the Mascular Disease Society, said: "Because this disease doesn't kill, isn't painful and affects older people, there has been a lack of urgency. The fact people have been left to go blind has caused far less outrage than young women with breast cancer being denied drugs."

Mrs Shaw's weight has dropped from eight stone (50kg) to six and a half (41kg) in the year since the IoS last spoke to her. She can no longer read food labels, cook or even use the microwave. She doesn't want to become a burden, but the determination in her voice has started to waver.

She said: "I miss being a free agent, going out, seeing my family and friends. I miss my garden. This has made me old. I could be an independent woman but now I'm just an old woman."