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
PROMOTED VIDEO
Life and Style
ebooksA superb mix of recipes serving up the freshest of local produce in a delicious range of styles
Life and Style
ebooksFrom the lifespan of a slug to the distance to the Sun: answers to 500 questions from readers
Voices
Oscar Pistorius is led out of court in Pretoria. Pistorius received a five-year prison sentence for culpable homicide by judge Thokozile Masipais for the killing of his girlfriend Reeva Steenkamp
voicesThokozile Masipa simply had no choice but to jail the athlete
Arts and Entertainment
Sister Cristina Scuccia sings 'Like a Virgin' in Venice
music

Like Madonna, Sister Cristina Scuccia's video is also set in Venice

Arts and Entertainment
James Blunt's debut album Back to Bedlam shot him to fame in 2004
music

Singer says the track was 'force-fed down people's throats'

News
i100
Life and Style
The Tinder app has around 10 million users worldwide

techThe original free dating app will remain the same, developers say

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

    IT Project Manager

    Competitive: Clearwater People Solutions Ltd: Our client based in Chelmsford a...

    Business Intelligence Specialist - work from home

    £40000 per annum: Ashdown Group: An established and growing IT Consultancy fir...

    Business Intelligence Specialist - work from home

    £40000 per annum: Ashdown Group: An established and growing IT Consultancy fir...

    IT Manager

    £40000 - £45000 per annum + pension, healthcare,25 days: Ashdown Group: An est...

    Day In a Page

    Two super-sized ships have cruised into British waters, but how big can these behemoths get?

    Super-sized ships: How big can they get?

    Two of the largest vessels in the world cruised into UK waters last week
    British doctors on brink of 'cure' for paralysis with spinal cord treatment

    British doctors on brink of cure for paralysis

    Sufferers can now be offered the possibility of cure thanks to a revolutionary implant of regenerative cells
    Let's talk about loss

    We need to talk about loss

    Secrecy and silence surround stillbirth
    Will there be an all-female mission to Mars?

    Will there be an all-female mission to Mars?

    Women may be better suited to space travel than men are
    Oscar Pistorius sentencing: The athlete's wealth and notoriety have provoked a long overdue debate on South African prisons

    'They poured water on, then electrified me...'

    If Oscar Pistorius is sent to jail, his experience will not be that of other inmates
    James Wharton: The former Guard now fighting discrimination against gay soldiers

    The former Guard now fighting discrimination against gay soldiers

    Life after the Army has brought new battles for the LGBT activist James Wharton
    Ebola in the US: Panic over the virus threatens to infect President Obama's midterms

    Panic over Ebola threatens to infect the midterms

    Just one person has died, yet November's elections may be affected by what Republicans call 'Obama's Katrina', says Rupert Cornwell
    Premier League coaches join the RSC to swap the tricks of their trades

    Darling, you were fabulous! But offside...

    Premier League coaches are joining the RSC to learn acting skills, and in turn they will teach its actors to play football. Nick Clark finds out why
    How to dress with authority: Kirsty Wark and Camila Batmanghelidjh discuss the changing role of fashion in women's workwear

    How to dress with authority

    Kirsty Wark and Camila Batmanghelidjh discuss the changing role of fashion in women's workwear
    New book on Joy Division's Ian Curtis sheds new light on the life of the late singer

    New book on Ian Curtis sheds fresh light on the life of the late singer

    'Joy Division were making art... Ian was for real' says author Jon Savage
    Sean Harris: A rare interview with British acting's secret weapon

    Sean Harris: A rare interview with British acting's secret weapon

    The Bafta-winner talks Hollywood, being branded a psycho, and how Barbra Streisand is his true inspiration
    Tim Minchin, interview: The musician, comedian and world's favourite ginger is on scorching form

    Tim Minchin interview

    For a no-holds-barred comedian who is scathing about woolly thinking and oppressive religiosity, he is surprisingly gentle in person
    Boris Johnson's boozing won't win the puritan vote

    Boris's boozing won't win the puritan vote

    Many of us Brits still disapprove of conspicuous consumption – it's the way we were raised, says DJ Taylor
    Ash frontman Tim Wheeler reveals how he came to terms with his father's dementia

    Tim Wheeler: Alzheimer's, memories and my dad

    Wheeler's dad suffered from Alzheimer's for three years. When he died, there was only one way the Ash frontman knew how to respond: with a heartfelt solo album