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
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?
SPONSORED FEATURES

ES Rentals

    Independent Dating
    and  

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

    iJobs Job Widget
    iJobs General

    Recruitment Genius: Travel Customer Service and Experience Manager

    £14000 - £17000 per annum: Recruitment Genius: The fastest growing travel comp...

    Recruitment Genius: Cleaner / Caretaker / Storeman

    £15500 - £17680 per annum: Recruitment Genius: A position has become available...

    Recruitment Genius: Head of Sales - SaaS B2B

    £60000 - £120000 per annum: Recruitment Genius: This conference call startup i...

    Recruitment Genius: Web Developer

    £25000 - £30000 per annum: Recruitment Genius: This digital and print design a...

    Day In a Page

    Blairites be warned, this could be the moment Labour turns into Syriza

    Andrew Grice: Inside Westminster

    Blairites be warned, this could be the moment Labour turns into Syriza
    HMS Victory: The mystery of Britain's worst naval disaster is finally solved - 271 years later

    The mystery of Britain's worst naval disaster is finally solved - 271 years later

    Exclusive: David Keys reveals the research that finally explains why HMS Victory went down with the loss of 1,100 lives
    Survivors of the Nagasaki atomic bomb attack: Japan must not abandon its post-war pacifism

    'I saw people so injured you couldn't tell if they were dead or alive'

    Nagasaki survivors on why Japan must not abandon its post-war pacifism
    Jon Stewart: The voice of Democrats who felt Obama had failed to deliver on his 'Yes We Can' slogan, and the voter he tried hardest to keep onside

    The voter Obama tried hardest to keep onside

    Outgoing The Daily Show host, Jon Stewart, became the voice of Democrats who felt the President had failed to deliver on his ‘Yes We Can’ slogan. Tim Walker charts the ups and downs of their 10-year relationship on screen
    Secrets of comedy couples: What's it like when both you and your partner are stand-ups?

    Secrets of comedy couples

    What's it like when both you and your partner are stand-ups?
    Satya Nadella: As Windows 10 is launched can he return Microsoft to its former glory?

    Satya Nadella: The man to clean up for Windows?

    While Microsoft's founders spend their billions, the once-invincible tech company's new boss is trying to save it
    The best swimwear for men: From trunks to shorts, make a splash this summer

    The best swimwear for men

    From trunks to shorts, make a splash this summer
    Mark Hix recipes: Our chef tries his hand at a spot of summer foraging

    Mark Hix goes summer foraging

     A dinner party doesn't have to mean a trip to the supermarket
    Ashes 2015: With an audacious flourish, home hero Ian Bell ends all debate

    With an audacious flourish, the home hero ends all debate

    Ian Bell advances to Trent Bridge next week almost as undroppable as Alastair Cook and Joe Root, a cornerstone of England's new thinking, says Kevin Garside
    Aaron Ramsey interview: Wales midfielder determined to be centre of attention for Arsenal this season

    Aaron Ramsey interview

    Wales midfielder determined to be centre of attention for Arsenal this season
    Community Shield: Arsene Wenger needs to strike first blow in rivalry with Jose Mourinho

    Community Shield gives Wenger chance to strike first blow in rivalry with Mourinho

    As long as the Arsenal manager's run of games without a win over his Chelsea counterpart continues it will continue to dominate the narrative around the two men
    The unlikely rise of AFC Bournemouth - and what it says about English life

    Unlikely rise of AFC Bournemouth

    Bournemouth’s elevation to football’s top tier is one of the most improbable of recent times. But it’s illustrative of deeper and wider changes in English life
    A Very British Coup, part two: New novel in pipeline as Jeremy Corbyn's rise inspires sequel

    A Very British Coup, part two

    New novel in pipeline as Jeremy Corbyn's rise inspires sequel
    Philae lander data show comets could have brought 'building blocks of life' to Earth

    Philae lander data show comets could have brought 'building blocks of life' to Earth

    Icy dust layer holds organic compounds similar to those found in living organisms