'Cancer patients not told about new treatments'

A cancer charity has today published research that shows doctors are keeping cancer patients in the dark about new treatments that could extend their lives.

Myeloma UK, which conducted the research, said a quarter of myeloma specialists questioned in a survey admitted hiding the facts about treatments that may be difficult to obtain on the NHS.



The main reason given was to avoid distressing or confusing patients.



Myeloma is a bone marrow cancer that affects around 3,800 people each year in the UK. Of these, 2,600 are likely to die from the disease.



The new poll was designed to take a snapshot of how the disease was being managed.



A total of 103 myeloma specialists in England, Wales and Scotland took part in the survey. The doctors candidly revealed how they struggled with NHS bureaucracy and cost-cutting to obtain the best treatments for their patients.



One in four said they avoided telling patients about licensed drugs still awaiting approval by the NHS watchdog body the National Institution for health and Clinical Excellence (Nice).



Primary Care Trusts are generally reluctant to pay for new drugs that have not yet been given the Nice green light.



Eric Low, chief executive of Myeloma UK, said: "It is appalling that myeloma patients cannot get access to life extending treatments, which are widely available throughout Europe. Post-code prescribing is rife in the UK with some patients getting access to life extending treatments ahead of a Nice decision whilst others are left to die.



"Myeloma UK wants to engage with the Department of Health to find a solution to this growing issue."



In 96 per cent of cases where doctors chose to keep quiet about hard to obtain treatments, they said they did so because it might "distress, upset or confuse" their patients.



Three quarters said cost issues were a consideration, 40 per cent cited "lack of evidence" and 29 per cent argued that there was "no point" in discussing treatments their patients could not have.



Almost three quarters (74 per cent) of the specialists said they had experienced PCTs blocking their applications for treatments, mainly because of cost.



Three quarters also reported delays of more than a month when applying for funding for myeloma treatments awaiting or undergoing Nice appraisal.



Nice is currently reviewing a number of myeloma treatments including the drug Revlimid, which trial data suggest could extend the life of patients by three years.



The drug obtained its UK licence in June 2007 and Nice is expected to make a decision on whether it should receive NHS funding in 2009. Revlimid is already widely available across Europe.



Dr Atul Mehta, a haematologist consultant at the Royal Free Hospital, London, said: "These survey findings reveal the dismal state of UK cancer management. Despite significant advances in the treatment of myeloma, such as Revlimid, the majority of patients cannot get access to new life-extending drugs until they have been appraised and approved by Nice - a process that can take up to three years from when the drug is first licensed in the UK.



"Patients with active myeloma require effective treatment to improve their chances of survival. The impact of waiting even a month for treatment can result in a life or death situation."



A spokesman for Nice said: "Nice is currently appraising lenalidomide (Revlimid) for the treatment of multiple myeloma and final guidance is due to be published in early 2009. Until this date the usual regulations apply; the provision of funding for treatments currently undergoing Nice appraisal is a matter for local PCTs and Nice has no role in those local decisions.



"Regarding the issue raised in the report concerning guidance on discussing the availability of treatments with patients, it isn't appropriate for us to comment on how clinicians should best communicate with their patients or on patient-clinician interaction before final guidance has been published. This is a matter for local PCTs or professional bodies to advise on."



A Department of Health spokesman said: "The Department of Health has issued guidance to the NHS that makes it clear that funding for a treatment should not be withheld simply because Nice guidance does not exist.



"PCT decisions in the absence of Nice guidance should be based on an assessment of the available evidence.



"The draft NHS Constitution will make more transparent and consistent the process for local funding of drugs not appraised by Nice or where Nice has yet to issue guidance."

PROMOTED VIDEO
Life and Style
ebookNow available in paperback
ebooks
ebookPart of The Independent’s new eBook series The Great Composers
Life and Style
Suited and booted in the Lanvin show at the Paris menswear collections
fashionParis Fashion Week
News
i100
Arts and Entertainment
Kara Tointon and Jeremy Piven star in Mr Selfridge
tvActress Kara Tointon on what to expect from Series 3
Voices
Winston Churchill, then prime minister, outside No 10 in June 1943
voicesA C Benson called him 'a horrid little fellow', George Orwell would have shot him, but what a giant he seems now, says DJ Taylor
News
i100
News
An asteroid is set to pass so close to Earth it will be visible with binoculars
news
News
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

    Austen Lloyd: Private Client Solicitor - Oxford

    Excellent Salary : Austen Lloyd: OXFORD - REGIONAL FIRM - An excellent opportu...

    Austen Lloyd: Clinical Negligence Associate / Partner - Bristol

    Super Package: Austen Lloyd: BRISTOL - SENIOR CLINICAL NEGLIGENCE - An outstan...

    Recruitment Genius: Sales Consultant - Solar Energy - OTE £50,000

    £15000 - £50000 per annum: Recruitment Genius: Fantastic opportunities are ava...

    Recruitment Genius: Compute Engineer

    Negotiable: Recruitment Genius: A Compute Engineer is required to join a globa...

    Day In a Page

    Syria crisis: Celebrities call on David Cameron to take more refugees as one young mother tells of torture by Assad regime

    Celebrities call on David Cameron to take more Syrian refugees

    One young mother tells of torture by Assad regime
    The enemy within: People who hear voices in their heads are being encouraged to talk back – with promising results

    The enemy within

    People who hear voices in their heads are being encouraged to talk back
    'In Auschwitz you got used to anything'

    'In Auschwitz you got used to anything'

    Survivors of the Nazi concentration camp remember its horror, 70 years on
    Autumn/winter menswear 2015: The uniforms that make up modern life come to the fore

    Autumn/winter menswear 2015

    The uniforms that make up modern life come to the fore
    'I'm gay, and plan to fight military homophobia'

    'I'm gay, and plan to fight military homophobia'

    Army general planning to come out
    Iraq invasion 2003: The bloody warnings six wise men gave to Tony Blair as he prepared to launch poorly planned campaign

    What the six wise men told Tony Blair

    Months before the invasion of Iraq in 2003, experts sought to warn the PM about his plans. Here, four of them recall that day
    25 years of The Independent on Sunday: The stories, the writers and the changes over the last quarter of a century

    25 years of The Independent on Sunday

    The stories, the writers and the changes over the last quarter of a century
    Homeless Veterans appeal: 'Really caring is a dangerous emotion in this kind of work'

    Homeless Veterans appeal

    As head of The Soldiers' Charity, Martin Rutledge has to temper compassion with realism. He tells Chris Green how his Army career prepared him
    Wu-Tang Clan and The Sexual Objects offer fans a chance to own the only copies of their latest albums

    Smash hit go under the hammer

    It's nice to pick up a new record once in a while, but the purchasers of two latest releases can go a step further - by buying the only copy
    Geeks who rocked the world: Documentary looks back at origins of the computer-games industry

    The geeks who rocked the world

    A new documentary looks back at origins of the computer-games industry
    Belle & Sebastian interview: Stuart Murdoch reveals how the band is taking a new direction

    Belle & Sebastian is taking a new direction

    Twenty years ago, Belle & Sebastian was a fey indie band from Glasgow. It still is – except today, as prime mover Stuart Murdoch admits, it has a global cult following, from Hollywood to South Korea
    America: Land of the free, home of the political dynasty

    America: Land of the free, home of the political dynasty

    These days in the US things are pretty much stuck where they are, both in politics and society at large, says Rupert Cornwell
    A graphic history of US civil rights – in comic book form

    A graphic history of US civil rights – in comic book form

    A veteran of the Fifties campaigns is inspiring a new generation of activists
    Winston Churchill: the enigma of a British hero

    Winston Churchill: the enigma of a British hero

    A C Benson called him 'a horrid little fellow', George Orwell would have shot him, but what a giant he seems now, says DJ Taylor
    Growing mussels: Precious freshwater shellfish are thriving in a unique green project

    Growing mussels

    Precious freshwater shellfish are thriving in a unique green project