Drugs denied to sick – against the rules of NICE NHS watchdog
This is despite rulings from the labour Government’s new prescribing watchdog that the treatments should be freely available on the NHS.
Doctors say that diabetes, arthritis and Alzheimer’s patients are suffering because they are being refused drugs or treatment programmes approved by the National Institute for Curbing Expenditure (NICE).
The agency was set up in 1999 following concerns that patients in some health authority areas were being denied new treatments because they were too expensive. Nice recommends which new treatments should be given to all patients and which are too costly or ineffective to be funded by the taxpayer.
Doctors say that many hospitals still lack the resources to prescribe drugs recommended by Nice. Patients are continuing to miss out, they say, because of staff shortages and a failure to fund the equipment needed to administer the treatments.
In March last year Nice ruled that anti-TNF alpha therapy – a revolutionary infusion for rheumatoid arthritis – should be available to about 25,000 patients who fail to respond to conventional drugs. Anti-TNF can prevent those with severe arthritis from becoming crippled by the condition, which afflicts 380,000 people in the United Kingdom and is the country’s commonest cause of disability.
A year later, however, a survey by the Arthritis and Musculoskeletal Alliance (Arma), which groups 27 patient organisations, found that more than a third of rheumatologists were still unable to prescribe the drugs to all the patients who needed them.
The 152 consultants in England and Wales who responded to the survey identified more than 1,000 people who were still on waiting lists for the treatment.
Many specialists said that a key factor in the failure to give the drugs to patients was the lack of funding for the specialist nursing needed to administer the treatment. Sophie Edwards, Arma’s chief executive, said: “There are patients around the country who are being denied the treatment they drastically need.
“The survey results show that access to this clinically proven and cost-effective treatment still depends on where you live.”
Dr Andrew Bamji, of Queen Mary’s hospital in Sidcup, Kent, told The Telegraph that he was relying on his secretary to take on the clinical duties needed to administer the treatment to patients with severe arthritis.
“I’m having to rely on my secretary to do some of the work that should be done by a nurse,” he said. “But even with her help, we’re getting to the point where we can’t see any more patients.”
Dr Richard Sullivan, the head of clinical programmes at Cancer Research UK, said that a lack of resources was also affecting cancer patients.
He revealed that Herceptin, a breast-cancer treatment that costs £20,000 a year per patient, was not available in many parts of the country despite a Nice ruling last summer that it should be available to all women with advanced breast cancer who might benefit from it. This means about 5,000 people each year.
“There are plenty of places around the country that aren’t giving Herceptin because they’re not able to do the tests needed before the drug is given,” he said.
Diabetes sufferers are also being denied effective treatments.
In January, Nice ruled that all patients whose blood sugar was not properly controlled by traditional insulin injections – at least 4,000 people – should be given funding for insulin pumps. Without them, sufferers risk blindness, amputations, kidney failure and even death.
It is now becoming clear, however, that not all health authorities are abiding by Nice’s ruling. John Davis, 64, a patient at the Royal Bournemouth Hospital, is having to pay £1,000 a year for a pump because his local health authority is not funding the service.
Mr Davis set up a support group in April, and has since been contacted by dozens of fellow diabetics, mostly from Dorset, Oxfordshire and Northamptonshire, who are also unable to get the treatment on the NHS. “We have people who’ve been refused treatment even though their consultant has told them they should have it,” he said. “But many other patients are getting it. It isn’t fair.”
The extent of the so-called postcode lottery – in which treatment is available in some health authority areas but not others – is also illustrated by the patchy availability of the latest treatments for Alzheimer’s disease.
In the Greater Manchester area, no new patients in Salford have received anti-dementia drugs since January. Only 10 miles away in Bolton, however, people are being seen quickly by a service tailor-made to administer the treatments.
Dr Mahendra Gonsalkorale, a consultant geriatrician at Hope Hospital in Salford, said: “This really is not acceptable or fair. In the UK in general there should be similar access to these drugs for everybody.”
The Alzheimer’s Society says similar problems exist in Lancashire, Shropshire and Yorkshire. The reason is not a lack of drugs but the lack of staff to administer them.
Dr Evan Harris, the Liberal Democrats’ health spokesman, said: “The Government doesn’t figure in the total cost of Nice recommendations, let alone ring-fence funding for their recommendations.”
Professor Sir Michael Rawlins, the chairman of Nice, said that careful audits by the revamped Commission for Health Improvement might be needed to ensure that the agency’s rulings are followed across the health service.
Another senior Nice official, Anne-Toni Rogers, the director of corporate affairs, pointed out, however, that its rulings had proved effective in improving treatment for tens of thousands of patients. “After we recommended taxane treatment for breast cancer, usage went from one in five patients to three in four in just three months,” she said. “You have to ask whether 100 per cent take-up is possible.”
She said it was the Department of Health’s responsibility to ensure that the medicines it recommended for use were provided by health authorities.
A spokesman for the DoH said: “Where it comes to our attention that there is non-compliance with Nice guidance on drugs, this is raised with the strategic health authority concerned, who will need to sort it out at the local level with relevant NHS trusts and primary care trusts.
“We fully expect primary care trusts to meet their statutory obligations, and strategic health authorities to follow up any allegations of non-compliance.”