'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."