She supported the NHS – then it let her down

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

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."

Suggested Topics
Sport
England's women celebrate after their 3rd place play-off win against Germany
Women's World CupFara Williams converts penalty to secure victory and bronze medals
Arts and Entertainment
Ricardo by Edward Sutcliffe, 2014
artPortraits of LA cricketers from notorious suburb go on display
News
newsHillary Clinton comments on viral Humans of New York photo of gay teenager
Arts and Entertainment
The gang rape scene in the Royal Opera’s production of Gioachino Rossini’s Guillaume Tell has caused huge controversy
music
Life and Style
ebookNow available in paperback
ebooks
ebookA delicious collection of 50 meaty main courses
Latest stories from i100
Have you tried new the Independent Digital Edition apps?

ES Rentals

    Independent Dating
    and  

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    Recruitment Genius: Sales Administrator - Spanish Speaking

    £17000 - £21000 per annum: Recruitment Genius: This is a fantastic opportunity...

    Recruitment Genius: Sales Administrator - German Speaking

    £17000 - £23000 per annum: Recruitment Genius: This is a fantastic opportunity...

    Recruitment Genius: Sales Administrator - Japanese Speaking

    £17000 - £23000 per annum: Recruitment Genius: If you are fluent in Japanese a...

    Recruitment Genius: Graphic Designer - Immediate Start

    £16000 - £25000 per annum: Recruitment Genius: This is a fantastic opportunity...

    Day In a Page

    The Greek referendum exposes a gaping hole at the heart of the European Union – its distinct lack of any genuine popular legitimacy

    Gaping hole at the heart of the European Union

    Treatment of Greece has shown up a lack of genuine legitimacy
    Number of young homeless in Britain 'more than three times the official figures'

    'Everything changed when I went to the hostel'

    Number of young homeless people in Britain is 'more than three times the official figures'
    Compton Cricket Club

    Compton Cricket Club

    Portraits of LA cricketers from notorious suburb to be displayed in London
    London now the global money-laundering centre for the drug trade, says crime expert

    Wlecome to London, drug money-laundering centre for the world

    'Mexico is its heart and London is its head'
    The Buddhist temple minutes from Centre Court that helps a winner keep on winning

    The Buddhist temple minutes from Centre Court

    It helps a winner keep on winning
    Is this the future of flying: battery-powered planes made of plastic, and without flight decks?

    Is this the future of flying?

    Battery-powered planes made of plastic, and without flight decks
    Isis are barbarians – but the Caliphate is a dream at the heart of all Muslim traditions

    Isis are barbarians

    but the Caliphate is an ancient Muslim ideal
    The Brink's-Mat curse strikes again: three tons of stolen gold that brought only grief

    Curse of Brink's Mat strikes again

    Death of John 'Goldfinger' Palmer the latest killing related to 1983 heist
    Greece debt crisis: 'The ministers talk to us about miracles' – why Greeks are cynical ahead of the bailout referendum

    'The ministers talk to us about miracles'

    Why Greeks are cynical ahead of the bailout referendum
    Call of the wild: How science is learning to decode the way animals communicate

    Call of the wild

    How science is learning to decode the way animals communicate
    Greece debt crisis: What happened to democracy when it’s a case of 'Vote Yes or else'?

    'The economic collapse has happened. What is at risk now is democracy...'

    If it doesn’t work in Europe, how is it supposed to work in India or the Middle East, asks Robert Fisk
    The science of swearing: What lies behind the use of four-letter words?

    The science of swearing

    What lies behind the use of four-letter words?
    The Real Stories of Migrant Britain: Clive fled from Zimbabwe - now it won't have him back

    The Real Stories of Migrant Britain

    Clive fled from Zimbabwe - now it won’t have him back
    Africa on the menu: Three foodie friends want to popularise dishes from the continent

    Africa on the menu

    Three foodie friends want to popularise dishes from the hot new continent
    Donna Karan is stepping down after 30 years - so who will fill the DKNY creator's boots?

    Who will fill Donna Karan's boots?

    The designer is stepping down as Chief Designer of DKNY after 30 years. Alexander Fury looks back at the career of 'America's Chanel'