'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."

Life and Style
ebookNow available in paperback
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

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

    iJobs Job Widget
    iJobs General

    Recruitment Genius: 3rd Line Virtualisation, Windows & Server Engineer

    £40000 - £47000 per annum: Recruitment Genius: A 3rd Line Virtualisation / Sto...

    Recruitment Genius: Refrigeration and Air Conditioning Service Engineer

    £26000 - £35000 per annum: Recruitment Genius: A successful national service f...

    Recruitment Genius: Business Development Executive / Sales - OTE £25,000

    £15000 - £25000 per annum: Recruitment Genius: This is an opportunity to join ...

    Recruitment Genius: Sales Administrator - Fixed Term Contract

    £17500 - £20000 per annum: Recruitment Genius: We currently require an experie...

    Day In a Page

    Sepp Blatter resignation: The beginning of Fifa's long road to reform?

    Does Blatter's departure mean Fifa will automatically clean up its act?

    Don't bet on it, says Tom Peck
    Charles Kennedy: The baby of the House who grew into a Lib Dem giant

    The baby of the House who grew into a Lib Dem giant

    Charles Kennedy was consistently a man of the centre-left, dedicated to social justice, but was also a champion of liberty and an opponent of the nanny-state, says Baroness Williams
    Syria civil war: The harrowing testament of a five-year-old victim of this endless conflict

    The harrowing testament of a five-year-old victim of Syria's endless civil war

    Sahar Qanbar lost her mother and brother as civilians and government soldiers fought side by side after being surrounded by brutal Islamist fighters. Robert Fisk visited her
    The future of songwriting: How streaming is changing everything we know about making music

    The future of songwriting

    How streaming is changing everything we know about making music
    William Shemin and Henry Johnson: Jewish and black soldiers receive World War I Medal of Honor amid claims of discrimination

    Recognition at long last

    Jewish and black soldiers who fought in WWI finally receive medals after claims of discrimination
    Beating obesity: The new pacemaker which helps over-eaters

    Beating obesity

    The new pacemaker which helps over-eaters
    9 best women's festival waterproofs

    Ready for rain: 9 best women's festival waterproofs

    These are the macs to keep your denim dry and your hair frizz-free(ish)
    Cycling World Hour Record: Nervous Sir Bradley Wiggins ready for pain as he prepares to go distance

    Wiggins worried

    Nervous Sir Bradley ready for pain as he prepares to attempt cycling's World Hour Record
    Liverpool close in on Milner signing

    Liverpool close in on Milner signing

    Reds baulk at Christian Benteke £32.5m release clause
    On your feet! Spending at least two hours a day standing reduces the risk of heart attacks, cancer and diabetes, according to new research

    On your feet!

    Spending half the day standing 'reduces risk of heart attacks and cancer'
    With scores of surgeries closing, what hope is there for the David Cameron's promise of 5,000 more GPs and a 24/7 NHS?

    The big NHS question

    Why are there so few new GPs when so many want to study medicine?
    Big knickers are back: Thongs ain't what they used to be

    Thongs ain't what they used to be

    Big knickers are back
    Thurston Moore interview

    Thurston Moore interview

    On living in London, Sonic Youth and musical memoirs
    In full bloom

    In full bloom

    Floral print womenswear
    From leading man to Elephant Man, Bradley Cooper is terrific

    From leading man to Elephant Man

    Bradley Cooper is terrific