Dementia costing UK £23bn a year

Dementia costs the country £23 billion per year- more than cancer and heart disease combined but receives a fraction of the funding, according to a new "wake-up call" report.

The number of sufferers at 822,000 is also 17 per cent higher than has previously been estimated and will pass the one million mark before 2025, the Alzheimer's Research Trust (ART) said.

Revealing stark differences in research funding, it calculated that for every pound spent on dementia studies, £12 is spent on investigating cancer and £3 on heart disease.

Rebecca Wood, chief executive of the ART, called for greater resources to fight the condition, saying: "The true impact of dementia has been ignored for too long.

"The UK's dementia crisis is worse than we feared. This report shows that dementia is the greatest medical challenge of the 21st century."

She added: "If we spend a more proportionate sum on dementia research, we could unleash the full potential of our scientists in their race for a cure.

"Spending millions now really can save us crippling multi-billion pound care bills later."

According to the report, which was prepared with experts from Oxford University, dementia's overall annual cost dwarfs the £12 billion cost for cancer care and the £8 billion for heart disease.

The £23 billion is made up of £9 billion in social care costs, £12 billion in unpaid care and £1.2 billion in health care costs.

Each dementia patient costs the economy £27,647 each year, researchers found, nearly five times more than a cancer patient and eight times more than someone suffering from heart disease.

The expense is driven mainly by the extent of unpaid carers and long-term institutional care - in contrast to cancer and heart disease whose costs are mainly taken care of by the NHS.

Big differences in research funding were also revealed in the study, called the Dementia 2010 report.

At £590 million, cancer research funding is 12 times the £50 million devoted to dementia, while heart disease received more than three times as much. Only stroke research received less.

The report calculated that £295 is spent on research for every person with cancer, compared with just £61 for each person with dementia.

Alastair Gray, professor of health economics at Oxford University and report author, contrasted the perception of the disease with cancer.

He said: "Many of us know people who have had cancer or heart disease but have been successfully treated and survived, so there is a perception that something can be done, and that more research will allow even more to be done.

"In contrast there are no cures for dementia at present; there are not even many ways of delaying it or slowing it down, so there may well be a feeling of inevitability surrounding it.

"However the lack of of effective treatments is surely an argument for devoting more effort to research, not less."

The report also documents a "diagnosis gap", between the expected number of people with dementia and the number of patients with dementia on GP registers.

In England, it is estimated only 31% of people with dementia are registered on GP lists.

Reasons for the low rate include GPs' lack of training and low confidence in diagnosing dementia.

Health minister Phil Hope said on BBC Radio 4's Today programme: "I would fully agree that dementia is one of the most important issues we face as a population, particularly as more and more people are living longer."

From:

http://www.independent.co.uk/life-style/health-and-families/health-news/dementia-costing-pound23bn-a-year-1887987.html

Nanny state wants NHS to provide free marriage guidance

Couples are to be offered marriage guidance counselling for free on the NHS, in a move which has drawn strong condemnation from patients and doctors' groups.

Couples with relationship problems will be offered free sessions for up to six months, as part of a £270 million programme to increase the provision of "talking therapies" for the public, Andy Burnham, the health secretary, announced.

Doctors and patients' groups said they were "horrified" by the use of NHS resources for relationship advice when patients with cancer and dementia were being denied treatment they desperately needed.

Currently, most people seeking help from services like Relate pay between £45 and £60 per session, meaning the free counselling packages will be worth around £1,000 per couple.

The NHS is expected to have to pay existing marriage guidance services, and newly-trained counsellors to provide the therapy.

Doctors and patients groups last night attacked the recommendation, contained in guidance by the National Institute for Health and Clinical Excellence (NICE). NICE has repeatedly come under fire for decisions to reject life-extending drugs for cancer and treatment to reduce symptoms of dementia.

On Thursday, NICE was accused by charities of "condemning patients" to an early death by rejecting the use of Nexavar, a drug which can extend the lives of liver cancer, arguing that its £9 million annual cost – £3,000 a month per patient – could not be justified.

Nick James, professor of clinical oncology at the Cancer Research UK Institute for Cancer Studies said: "I am horrified, in particular because of the way these decisions are taken without public debate.

"I think most people would say treatment for those who are sick with cancer should be top of our list, and I would really question whether these kinds of efforts to preserve marriages are a matter for the state."

NICE has previously restricted the use of drugs to limit the effects of Alzheimer's, costing £2 a day, while provoking further controversy in May when it ruled in favour of alternative therapies like acupuncture for back pain, despite admitting there was little evidence they worked.

Michael Summers, Vice-President of the Patients Association, urged NICE and the Government to "get their priorities right". If we had the luxury of untold sums of money, maybe we would think about paying for couples counselling," he said.

"As things stand, people are still waiting for urgent treatment, being denied drugs for cancer, and dementia, and it seems inappropriate at the very least to start using public money in this way".

From:

http://www.telegraph.co.uk/health/healthnews/NHS-will-provide-free-marriage-guidance

150,000 dementia sufferers being prescribed anti-psychotic drugs unnecessarily

Up to 150,000 people with dementia are being prescribed anti-psychotic drugs unnecessarily, a Government ordered review disclosed.

Only around 36,000 of the 180,000 people on the drugs in the UK derive any benefit from them, it said. Overprescribing of the drugs is linked to an extra 1,800 deaths a year among elderly people.

Anti-psychotic medicines are licensed to treat people with schizophrenia and are used off-licence for dementia patients in care homes and hospitals.

In his review, Sube Banerjee, professor of mental health and ageing at the Institute of Psychiatry at King's College London, said the rate of use of anti-psychotic drugs could be cut to one third of its current level with appropriate action.

Jeremy Wright, chairman of the All Party Parliamentary Group on Dementia, called for more training to be given to care home staff and for greater involvement of the patient's family and friends over the decision on whether to prescribe.

He told BBC Radio 4's Today programme: "We need to give people other ways of avoiding the problem and that means making sure staff who work in care homes are properly trained in dementia.

"We need to involve family members and friends and loved ones much more in the decision to prescribe and the decision to keep prescribing these drugs."

He added: "If we can deal with training, if we can deal with regular reviews and if we can involve family and friends much more often, we will start to reduce the incidence of this very widespread over-prescription."

Nadra Ahmed, chairman of the National Care Homes Association, said the blame did not lie solely with care homes.

She explained it was GPs who made the decision to prescribe dementia sufferers with anti-psychotic drugs.

She told the programme: "One of the things we need to get absolutely clear here is these drugs are prescribed by general practitioners, they are not prescribed by the care home providers. This is about medical conditions which are obviously reviewed by GPs.

"We have clients who come into our homes, sometimes already on these drugs and actually very good providers do tend to use their initiative and try to manage the conditions and wean people off drugs.

"Very often what happens is that GPs are just not giving us enough time in our services to come and review the medication and people can be on this medication and once they're on it, people, quite rightly, are reluctant to take them off."

She also rejected claims that some care home providers sedate dementia sufferers as it makes them easy to manage.

There are around 700,000 people with dementia in the UK. That figure is expected to soar in the coming decades as life expectancy lengthens.

Rebecca Wood, chief executive of the Alzheimer's Research Trust, said: "It's critical that the dangers of wrongly-prescribed anti-psychotics are understood and Government action is taken to prevent putting more people at risk.

"Alzheimer's Research Trust scientists at the Institute of Psychiatry are investigating alternative safer means of reducing agitation among dementia patients.

"We must urgently develop safe and effective treatments for people with dementia.

"Unless researchers develop new treatments, within a generation 1.4 million people will live with dementia in the UK alone."

Paul Burstow, a Liberal Democrat MP who has led a 10-year campaign highlighting the risks of over and inappropriate prescribing, said: "This review comes much too late for thousands of elderly people whose lives have been cut short by the reckless prescribing of anti-psychotic drugs.

"The evidence that anti-psychotic drugs do more harm than good has been mounting for years. There is next to no benefit for the older person and prolonged prescribing can lead to premature death.

From:

http://www.telegraph.co.uk/150000-dementia-sufferers-being-prescribed-anti-psychotic-drugs-unnecessarily

Drugs denied to sick - against the rules of NICE NHS watchdog

Patients in many parts of Britain are being denied effective and sometimes life-saving treatments because of funding shortages in the National Health Service by NICE.

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."

From:
Drugs-denied-to-sick-against-the-rules-of-new-NHS-watchdog.html

Lynda Bellingham hits out over Alzheimer's drugs failure

The actress Lynda Bellingham has spoken about her anger that dementia drugs came too late to save her mother's mind and are still not available to all patients.

Bellingham, 60, who became famous for playing the homely matriarch from the Oxo television commercials, said that her mother had dementia for ten years before she died in 2004, but was not given the drugs she needed in time.

She said: "Mum was put on Aricept, one of the new drugs that health chiefs will only fund for some sufferers. It helped a little but for her it came too late.

"I think it's outrageous that patients are being told they can't have these drugs."

Aricept, which improves memory and day to day life for Alzheimer's suffers, costs about £2.50 a day. The NHS currently only gives it to people with severe forms of the disease, a small proportion of the 700,000 people in Britain with Alzheimer's.

The Loose Women presenter who is to star in a theatre production of Calendar Girls, said that watching her mother's mental deterioration was "heart-breaking".

"Towards the end Mum often didn't recognise us. Logically you understood but emotionally it was devastating," she said.

The family even had to make the difficult decision not to tell their mother that her husband had died because they worried she would not remember.

It comes after Carol Thatcher revealed this weekend that Lady Thatcher forgets the death of her husband and has to be reminded.

Terry Pratchett, the author who was diagnosed with early-onset Alzheimer's last year, has spoken out about the lack of funding the disease attracts and the poor availability of drugs.

He has said that the NHS was not "really set up to deal with" Alzheimer's sufferers and expressed frustration that funding on research for a cure was three per cent of that for cancer.

Bellingham agreed that the disease attracts less attention than cancer because there "is no physical manifestation".

She said: "We must act now to provide the care and support dementia patients and their families need."

From:
Lynda-Bellingham-hits-out-over-Alzheimers-drugs-failure.html

NICE blight- at last a life saving choice for patients

For the past nine years the National Institute for Curbing Expenditure (NICE) has been called upon to make judgments on matters of life and death.

Its role, in essence, is to ration healthcare by assessing the cost effectiveness of new treatments. The startling advances in drugs that can alleviate the symptoms of lethal diseases, particularly cancers, presents it with a particular dilemma, for these new drugs are frequently very expensive.

Nice has to balance the extent to which such drugs may extend a patient's life, the quality of that life, and the cost of the drug to the National Health Service. This is not an easy or an enviable task.

Most clinicians would argue that such a body is necessary. The NHS has finite resources so rationing is unavoidable. It is also important that there is a uniform approach to treatments across the country - Nice was established in an attempt to end the unfairness of the postcode lottery in health provision.

Yet the institute has attracted criticism for the tardiness of its assessment process and, increasingly, for the quality of its decisions.

For example, its refusal in 2006 to sanction the use of Aricept to delay the onset of Alzheimer's caused anger, not least because the cost was just £2.50 a day - a tiny price to pay to alleviate the distress of this disease.

More recently, Nice has been condemned for its refusal to authorise the use of four new drugs for kidney cancer which would cost tens of thousands of pounds a year but could prolong a patient's life, albeit by a matter of months.

Against this background, yesterday's announcement by Nice, formalising a U-turn on the funding of Lucentis to treat wet age-related macular degeneration, the most common cause of blindness in the elderly, is significant.

The move signals a new pragmatism in the way Nice works. In an agreement with the drugs maker Novartis, the institute has stipulated that the NHS will pay for the first 14 treatments and, if further injections are required, the company will pick up the bill.

Such flexibility is the way forward. In October, a Department of Health review is expected to overturn the spiteful rule that deprives a patient of any NHS care if he pays privately for drugs.

This clears the way to co-payment for drugs and will open the floodgates to a new revenue stream for healthcare.

Insurance companies are waiting to offer low-cost policies to top-up basic NHS care. That will leave Nice facing fewer life-and-death decisions because patients will be able to buy their own life-saving treatments without jeopardy.

It will also give patients greater choice as well as control over their own treatment - and that is long overdue.

From the Telegraph's Editorial Opinion:
http://www.telegraph.co.uk/opinion/main.jhtml?xml=/opinion/2008/08/27/dl2701.xml

Drug companies win Alzheimer's Aricept appeal against NICE watchdog

The pharmaceutical industry won a stunning victory in the Court of Appeal over the labour government’s "value for money" watchdog NICE.

NICE, the National Institute for Curbing Expenditure, had acted unfairly in refusing to allow Eisai and Pfizer full access to a computer model used to assess the cost-effectiveness of Aricept, an Alzheimer’s drug, the court ruled.

NICE had decided that the drug should not be prescribed on the NHS to patients with mild Alzheimer’s disease.

But Eisai and Pfizer, which market Aricept in a partnership, were disadvantaged in appealing against this guidance by NICE’s refusal to let them have a “fully executable” version of the economic model it had used.

Had the companies had the full version, they could have tested it using a variety of assumptions and be in a better position to challenge the guidance. The Court of Appeal decision means that NICE must now make such a version available.

Lord Justice Richards, giving the ruling of the appeal judges, said NICE had supplied a spreadsheet of the economic model used to evaluate the drugs and had refused an Eisai request for full details.

“The view I have come to is that, notwithstanding NICE’s considered position to the contrary (to which in itself I am prepared to give some weight), procedural fairness does require release of the fully executable version of the model.”

Refusal to do so, said the judge, put drugs companies at “a significant disadvantage” in challenging the reliability of the model.

He allowed the appeal by Eisai, who will now receive the full details and make new representations to NICE, which will then make a new appraisal of the drugs.

NICE is now considering whether to appeal to the House of Lords. It has always believed that the full details of the computer programs are the intellectual property of the academic teams who developed them, and who are entitled to have them protected.

Andrew Dillon, chief executive of NICE, said: “We will be considering very carefully the findings and the implications for the time it takes us to provide advice to patients and the NHS on the use of new treatments.

“The ruling will increase the complexity of our drug appraisals in some cases and they may take longer as a result. In the meantime, and in accordance with the judges' ruling, we will provide Eisai with an executable version of the economic model used in our appraisal, so that they comment on it.”

From:
http://www.timesonline.co.uk/tol/news/uk/health/article3854121.ece

Health Direct notes that the ruling - the first time that NICE has been successfully challenged in court - could open the door to other companies seeking access to the economic models on the same basis. NICE often uses computer models developed for it by outside teams.

The ruling will not make Aricept available to Alzheimer's sufferers. It will simply enable Eisai and Pfizer to review the model and see if doing so reveals any flaws in NICE’s reasoning. If it does, they will be able to appeal against the guidance.

Neil Hunt, chief executive of the Alzheimer’s Society, said: “The decision is a damming indictment of the fundamentally flawed process used by NICE to deny people with Alzheimer’s disease access to drug treatments.

Pratchett funds Alzheimer's study as labour wouldn't fund treatment

Terry Pratchett the best selling fantasy author is to donate £500,000 for research into Alzheimer's disease. Pratchett, 59, announced the pledge at the Alzheimer's Research Trust annual conference.

Telling leading dementia specialists of his determination to find a cure, he said: "I intend to scream and harangue while there is time."

There are 15,000 people in the UK with early-onset dementia, which strikes under the age of 65 years.

Mr Pratchett has a rare form of the disease called posterior cortical atrophy, in which areas at the back of the brain begin to shrink and shrivel.

He says he is starting to notice its effect on him.

"I've given up my driving licence because I didn't feel confident driving. And if I've got something inside out, it's a little bit puzzling getting it the right way round again."

He added: "The curious thing is that writing goes on, although the typing doesn't."

Mr Pratchett is paying for the Alzheimer's drug Aricept because the NHS says he is too young to get it for free.

The author told the conference he is prepared to go to extreme lengths in order to beat the disease.

He said: "Personally, I'd eat the arse out of a dead mole if it offered a fighting chance.

"I am, along with many others, scrabbling to stay ahead long enough to be there when the cure comes along. Say it will be soon - there's nearly as many of us as there are cancer sufferers, and it looks as if the number of people with dementia will double within a generation.

"In most cases, alongside the sufferer you will find a spouse suffering as much. It is a shock to find out that funding for Alzheimer's research is just 3% of that to find cancer cures."

In total, an estimated 700,000 people in the UK have Alzheimer's disease.

However, the Alzheimer's Research Trust estimates that just £11 per patient is spent annually on research into the disease - compared with £289 for each cancer patient.

Rebecca Wood, chief executive of the Alzheimer's Research Trust, said the trust currently had to turn down two out of every three research projects due to lack of funds.

She said: "Whilst we were deeply saddened to learn of Mr Pratchett's diagnosis, we are delighted that he has chosen to speak out about his experiences with Alzheimer's disease, to raise awareness about its impact and the desperate need for more research.

"Research is the only way to beat this disease and help people like Terry - to prevent them losing their thinking skills and keep them doing the things they love."

From:
http://news.bbc.co.uk/1/hi/health/7291315.stm

Health Direct notes that once again labour's NHS funding system is again rightly attracting criticism for it's double standards and postcode lottery.

NHS pays out £160m for social care patients

The National Health Service has paid out £180m in compensation to people with continuing care needs whom it moved into the means tested social care system.

The bill is the latest stage in a decade long saga that began in the mid-1990s when the health service started shifting care for deeply dependent patients whose condition could no longer be improved medically but who required continuing nursing as well as social care.

The patients were moved out of free NHS care and on to the social care budget, where they were means tested for the support they received.

Given the level of care such people needed, families and individuals faced bills that in some cases ran to tens of thousands of pounds.

In 2003 Ann Abraham, the health service ombudsman, said that health authorities had "misinterpreted and misapplied" the difficult rules concerning the boundary between health and social care since 1996. The result, she said, had been both "hardship and injustice".

The health department agreed to review cases and said yesterday that it had so far examined 12,000.

"In about 2,000 cases it was found that the decision not to award NHS funding had been incorrect," a departmental spokesman said. "The NHS has paid restitution to the affected individuals or their families, totalling £180m to date," or about £90,000 on average.

A further 1,300 cases remain under review, with the aim of completing them by the end of March. However, the department said that it was not possible to estimate what the final bill would be.

The department said that the ombudsman's ruling and the review had led to improved processes within the NHS in deciding who continued to get free treatment.

About 40,000 people get continuing care packages at present.

Mervyn Kohler of Help the Aged, the charity, said that while restitution was welcome, for many the payments came too late. Some people had been forced to sell their homes to pay for care.

The whole system for continuing care remained "a terrible mess", Mr Kohler said. People were forced to navigate a complex system at a time when they were ill-equipped to do so. Many inconsistencies also remained, he said.

This underlined the need for the government's promised green paper on social care to lead to a radically new funding system that was "easy to understand, accessible and properly funded".

The Alzheimer's Society said that thousands of people with that disease received only means-tested assistance.

From:
http://www.ft.com/cms/s/0/422bbd44-d9d8-11dc-bd4d-0000779fd2ac.html

MPs Call for rethink over NICE drug assessments

The cost effectiveness of new medicines should be judged by National Institute for Curbing Expenditure (NICE) in terms of the wider social benefits that their availability on the National Health Service would bring, according to MPs.

In a report published on Thursday, the Commons health committee also says the threshold at which the life enhancing impact of expensive drugs is deemed to outweigh their cost must be subject to independent scrutiny.

The report recommends a sharp increase in the workload of the NICE to evaluate medicines as they are launched, and to weed out older treatments that are no longer cost-effective.

The committee calls for a change in the law so that Nice can assess not only medical costs and benefits but also the broader social impact of new medicines. It proposes that an independent body should review the balance of cost versus effectiveness.

Paul Hooper, head of the UK subsidiary of Eisai, the Japanese pharmaceutical company that last year challenged Nice’s rejection of its Alzheimer’s drug, said he “welcomed” the demand that wider social benefits be considered – a reference to the burden imposed on family members and social workers by caring for someone with Alzheimer’s.

However, the Association of the British Pharmaceutical Industry, the main trade body, warned that “patients will see little benefit” from the recommendations, and that assessments at the time of drug launches could further obstruct the use of innovative medicines.

Thursday’s report – the second on Nice by the committee since it was set up in 1999 to advise the government on whether the NHS should pay for new medicines – steers clear of radical calls for reforms to pharmaceutical prices at a time when the government is considering an overhaul of the pricing mechanisms.

“Nice plays a vital role in determining NHS policy and it will become more important and demanding as time goes on, especially with reducing budget increases,” said Kevin Barron, chairman of the committee.

He called for an end to political interference from government ministers in Nice’s work, highlighting the pressure to approve Herceptin for early breast cancer treatment and a decision by the Department of Health to authorise new multiple sclerosis drugs despite opposition from the institute.

The report’s demands could require substantial extra funding for Nice and stretch the ability to recruit specialist health economists to carry out the expanded work. However, Doug Naysmith, a member of the committee, said: “This [advice] should not result in a vast increase of new medicines, and possibly the reverse.”

Prof Sir Michael Rawlins, chairman of Nice, said he broadly supported many of the recommendations in the report, but warned of the risk of “unintended consequences” and cautioned that “the details would have to be looked at very carefully”.

The MPs advised caution in the shift towards “risk-sharing” schemes, including one endorsed by Nice last year by which Janssen-Cilag would rebate the cost to the NHS of its multiple myeloma drug Velcade if patients showed no significant improvement. The committee said such schemes had shown no clear benefits.

http://www.ft.com/cms/s/0/be469c0e-bf08-11dc-8c61-0000779fd2ac.html?nclick_check=1

Health Direct has publicised several recent controversial Nice decisions:

Dec 2007- Nice backs down under heavy public pressure on its previous advice that Lucentis should only be used by the NHS to treat wet age-related macular degeneration, which causes blindness, once it affects a patient’s second eye. It can now be used in the first eye to suffer. Consultation closes next week on its revised guidance that Novartis, the manufacturer, should pay if more than 14 injections are required.

Sept 2007- Nice stands by its ruling that the NHS should not use three drugs for early stage Alzheimer’s disease, after winning most aspects of a judicial review challenging this brought by Eisai, manufacturer of one of the drugs, with support from others – Pfizer and Shire – as well as from the Alzheimer’s Society. Nice supports treatment with the drugs, once moderate Alzheimer’s is diagnosed.

June 2007- Nice recommends approval of Velcade for multiple myeloma – but only on condition that Janssen-Cilag, the manufacturer, agrees to a “risk-sharing agreement” to rebate the cost to the NHS for patients who fail to show a significant improvement.

Experts criticise NICE drugs advisory body

Labour's drugs advisory body NICE is issuing poor quality guidance because it excludes experts from the drafting process, doctors told MPs on Friday.

Experts on aspects of thrombosis attacked guidelines issued by the National Institute for Clinical Excellence (Nice) for lack of consultation and inappropriate use of evidence.

Dr Beverley Hunt, medical director of Lifeblood, the thrombosis charity, told the Commons health committee: “The Nice process doesn’t use experts well.”

She said specialists in the field were often excluded for fear of conflicts of interest, but those drafting drugs guidance lacked understanding of the scientific data they were reviewing.

Dr Hunt argued that suitably qualified experts should be more closely involved, and that conflicts of interest could be tackled through disclosure and excluding only those who derived more than 10 per cent of their salary from products linked to their advice.

Conflicts could be further minimised by allowing experts to act as advisers rather than formally being among the drafters of guidance, she said.

Dr Hunt’s criticisms were shared by Prof Roger Atkins from the British Orthopaedic Association, who expressed frustration that his colleagues “who have dedicated 20 to 30 years of their lives [to the subject] were simply not involved” in drafting relevant guidance.

Prof Atkins said some guidance issued last year had “very significant flaws”, and it had proved difficult to discuss and propose amendments with the Nice committee concerned.

Richard Barker, director-general of the Association of the British Pharmaceutical Industry, the trade body, endorsed the calls, but stressed that drug companies were keen to consult leading specialists when designing clinical trials.

Nancy Devlin and John Appleby from the King’s Fund, the health think-tank, called for the creation of an independent review mechanism separate from Nice to assess its cost-effectiveness threshold – similar to the Bank of England’s monetary policy committee.

http://www.ft.com/cms/s/0/5c2160b4-7e98-11dc-8fac-0000779fd2ac.html


Drugs watchdog faces legal review- NICE's approach is irrational and flawed
http://www.healthdirect.co.uk/2006/11/drugs-watchdog-faces-legal-review.html

Health Direct notes that even the experts are questioning the deliberations of the National Institute for Curbing Expenditure.

On Fri 17 Nov 06 Health Direct posted- Drugs watchdog faces legal review- NICE's approach is irrational and flawed

A decision by the Labour government's drugs watchdog to restrict the use by the NHS of Alzheimer's medication is to be challenged in court.

Two drug companies plan to apply for a judicial review of the way the National Institute for Health and Clinical Excellence reached its conclusion. NICE ruled NHS patients with newly diagnosed, mild Alzheimer's disease should not be prescribed the drugs.

Neil Hunt, chief executive of the Alzheimer's Society, said: "It's great news that NICE will be challenged in court. NICE holds the fate of thousands of people's lives in its hands and it is only right that it is brought to account."

NICE's Alzheimer's court win condems thousands to more suffering

NICE has thwarted campaigners who have failed in their High Court bid to force the NHS to fund Alzheimer's drugs in people with early stage disease. However, the National Institute for Curbing Expenditure (NICE) has been told to rewrite guidance on how the disease is assessed.

The Court upheld NICE's decision that the drugs are only cost effective in later stage disease. It is the first time a judicial review had been sought on NICE guidance.

Drugs company Eisai brought the case to the High Court with support from fellow drugs firms Pfizer and Shire and the Alzheimer's Society and are now planning to appeal the decision.

They were successful on one count - that tests to assess Alzheimer's are discriminatory in people with learning difficulties or those who speak English as a second language.

But claims that NICE did not properly evaluate the impact of the drugs on the quality of life of carers and that the figures on the cost of long term care used in their analysis were too low were not upheld by the court.

The judge dismissed two further claims of irrationality and procedural fairness.

That means patients with early-stage Alzheimer's will still not be recommended for funding.

NICE guidance in 2001 recommended the drugs - which can make it easier to carry out everyday tasks - should be used as standard.

But guidance published in November 2006, after months of appeals, stated that the drugs should only be prescribed to people with moderate-stage disease.

NICE said the drugs, which cost about £2.50 a day, did not make enough of a difference to recommend them for all patients and were not good value for money.

The Alzheimer's Society said they had won a very important point that NICE guidance is unlawful because it discriminated against significant groups of people. But called the overall ruling "insulting and devastating news".

Andrew Dillon, chief executive of NICE said: "Our guidance stands and the drugs continue to be recommended only for people with moderate Alzheimer's disease, but the court has asked us to clarify our guidance when it is used for certain groups.

Dr Paul Hooper, Managing Director of Eisai UK, said: "The guidance NICE has issued is morally reprehensible. "They are denying patients access to early treatment and that is wrong."

Harriet Millward, deputy chief executive of the UK's largest dementia research charity, the Alzheimer's Research Trust, said: "We are devastated that these drugs will remain unavailable on the NHS to people with early-stage Alzheimer's when they might benefit from them.

"We urgently need to do more research to find better treatments, but research is currently hugely underfunded - we are scraping for every penny to fund vital work."

But Mervyn Kohler, Help the Aged special adviser said the ruling represented "some progress".

"It is important that NICE examines its guidance on these drugs, not just in the light of the ruling today but bearing in mind the public concern which the case has demonstrated."

Gordon Lishman, director general of Age Concern, said the ruling was disappointing.

"The drugs can cost as little as £2.50 a day per person and could make day-to-day life far more manageable for thousands of people."

But Professor Richard Gray, director of the University of Birmingham Clinical Trials Unit, said the court made the right decision.

From:
http://news.bbc.co.uk/1/hi/health/6939950.stm

NICE's Alzheimers drug ban is abhorrent the High Court is told when Health Direct posted on 26 Jun when the health watchdog NICE's decision to deprive 100,000 mild Alzheimer's victims of a £2.50 a day drug that can delay the onset of the disease was condemned as "abhorrent and disgusting" in the High Court yesterday.

There are about 100,000 new cases diagnosed each year. They claim Nice has ignored the proven benefits of the drugs. They want Nice to be forced to reconsider its decision that the drugs be given only to moderate and severe Alzheimer's sufferers.

Anger over NHS plan to give addicts iPods

Drug addicts are to be offered gift vouchers and prizes on the National Health Service under plans by the labour government’s medicine watchdog NICE to encourage them to stay clean.

The National Institute for Health and Curbing Expenditure (NICE) will recommend the system of inducements, which could enable clinics to offer televisions and iPods as prizes, to tackle the burgeoning drugs problem.

But patients denied drugs for blindness, Alzheimer’s and lung cancer under Nice rationing are likely to accuse it of wasting public money.

Katherine Murphy, of the Patients Association, said: “Why should these people with self-inflicted problems be given priority over people who have a genuine illness? Some people with genuine disease are being forced to sell their homes for the medicines they need.”

Under the guidelines expected to be published by Nice this week, heroin and cocaine users will be given the financial rewards if they test free of drugs. The scheme is inspired by one already operating successfully in America.

The range of financial incentives is likely to include vouchers, which start at £5 but increase in value each time the addict tests negative. Typically, there would be three tests each week and therefore three chances to gain vouchers of increasing value. Drafts of the guidance suggest giving addicts who test free of drugs tickets for a draw to win prizes worth up to £100.

Research by the University of Connecticut found cocaine and methamphetamine users stayed drug free for longer when they had the chance to win prizes such as telephones, stereos, DVD players and televisions.

Every time addicts gave a negative drugs test they were given tickets for the draw. They “earned” an increasing number of tickets for every week that they remained drug free.

Those who endorse financial rewards for addicts argue that any money will be recouped because those who stay clean will make fewer demands of the NHS.

From;
http://www.timesonline.co.uk/tol/news/uk/health/article2116323.ece

Dementia victims being failed by NHS- NAO

Hundreds of thousands of elderly people suffering from dementia are being comprehensively failed by the labour government and the health service, Whitehall's spending watchdog warns. Far too few people are being diagnosed as suffering from dementia - or are being diagnosed much too late - and even then drugs and other treatments are not widely available.

Britain languishes near the bottom of the European league table for the number of victims receiving anti-dementia drugs. Only five countries have a worse record.

The National Audit Office (NAO) report says urgent action is needed to tackle shortcomings in services for a condition which costs the country £14.3 billion a year - more than £25,000 for every man, woman and child - including £1.2 billion spent by the NHS.

In particular, there needs to be more support for the "selfless" army of nearly half a million carers who look after relatives and friends with dementia.

The report's publication comes as the labour Government's drugs rationing watchdog NICE is facing a legal challenge over its decision to restrict the availability of drugs that can delay the onset of Alzheimer's.

The National Institute for Curbing Expenditure ruled that around 100,000 people in the early stages of the disease should not receive the drugs on the NHS. But drugs companies launched a High Court challenge last week to overturn the decision.

While Nice had ruled out drugs for people in the early stages of Alzheimer's - which accounts for 62 per cent of all dementia cases -this report says there is a consensus that early diagnosis and treatment is vital.

In a highly critical report, the NAO says ministers and the NHS have not given enough priority to a condition which is suffered by around 560,000 people in Britain.

However, that figure is expected to soar by nearly 40 per cent to around 780,000 over the next 15 years as people live longer. By 2051, there will be 1.4 million sufferers.

The report says that dementia is estimated to be a factor in almost 60,000 deaths each year, around 13 per cent of all deaths in Britain. In around 18,000 cases, dementia is the main cause of death, often because victims become so frail they lose the ability to swallow or eat.

Despite its growing prevalence, the report says that only one in three sufferers ever receive a formal diagnosis. It takes twice as long to diagnose patients in Britain than many other European countries.

The report was welcomed last night by campaigners and opposition politicians.

Neil Hunt, the chief executive of the Alzheimer's Society, said: "The human and economic cost of dementia can't be ignored - one in three older people will end their lives with a form of dementia.

"It is absolutely crucial that people with dementia get diagnosed as early as possible so that they and their families get the information and support they need."

• The elderly are finding it increasingly difficult to access crucial care services, a survey reveals today.

Older people are being confronted by a growing "care gap", with low-level services which allow people to carry on living in their home - such as shopping or cleaning - being squeezed out as authorities focus scarce resources on intensive care for the most vulnerable.

The survey by charity Counsel and Care showed that 70 per cent of local authorities only provide care for those with "critical or substantial needs".

From:
http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2007/07/04/nhs104.xml

NICE's Alzheimer's drug ban abhorrent, High Court told

The health watchdog NICE's decision to deprive 100,000 mild Alzheimer's victims of a £2.50-a-day drug that can delay the onset of the disease was condemned as "abhorrent and disgusting" in the High Court yesterday.

In the first ever High Court challenge of its kind, a judge was urged to force the National Institute for Health and Clinical Excellence (aka National Institite for Curbing Expenditure), to reconsider its block on the drugs for those newly diagnosed with the disease.

If successful, the case, brought by the drugs company Eisai and backed by the Alzheimer's Society, could precipitate a flood of legal actions from patients refused other drugs on the NHS.

Nice decided last year that Aricept, Reminyl and Exelon - three inhibitors - should no longer be made available on the NHS.

At a cost of £2.50 a day, the drugs were too expensive when weighed against the benefits, it said.

But as the case began in London, Alzheimer's sufferers and their carers protested outside the court, claiming the drugs had given them "a stay of execution".

Inside the court, Mrs Justice Dobbs heard that Keith Turner, 68, a former chiropodist from Hastings, East Sussex, who was diagnosed in April 2004 and prescribed Aricept, said it had given him back his life.

His wife Lillian said it was "abhorrent and disgusting" that Nice was suggesting that carers such as her would be better off the sooner their sick relatives went into care, she said in a statement. "Even when Keith deteriorates - as we accept he ultimately will - each day we live together at home will be a day we cherish and value," she said.

Eisai, the Japanese company that makes Aricept; Pfizer, which distributes it in Britain; and the Alzheimer's Society are accusing Nice of making an "illegal" and "flawed" decision in deciding that those with mild Alzheimer's be denied the drugs.

There are about 100,000 new cases diagnosed each year. They claim Nice has ignored the proven benefits of the drugs. They want Nice to be forced to reconsider its decision that the drugs be given only to moderate and severe Alzheimer's sufferers.

David Pannick, QC, for Eisai, said: "One cannot over-emphasise the distress and damage caused to patients and their families by the disease, which progressively destroys the personality."

Mr Pannick said Eisai and Pfizer recognised that Nice had a difficult job to perform, but it had to adopt a fair procedure, respect rights protected by the law and must not act in an irrational manner.

During the four-day hearing Nice will apparently argue that there was no unfairness.

From:
http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2007/06/26/nelderly226.xml

It has taken 8 months for the legal bods to get to the courts. On 11 Oct 06 Health Direct posted: National Institute for Curbing Expenditure (NICE) blights thousands of Alzheimer sufferers

NICE has been renamed by NHS doctors as the National Institute for Curbing Expenditure after it's latest edict to ban the funding of Alzheimers drugs costing only £2.50 a day- which will effect hunderds of thousands of sufferers. "This blatant cost-cutting will rob people of priceless time" said Neil Hunt of the Alzheimer's Society.

Help the Aged said one in five people over 80 were affected by dementia and the number of people living with the disease was set to double in a decade.

Jonathan Ellis, senior policy manager at the charity, added: "It cannot be right to allow the health of thousands of older people to deteriorate on the altar of cost.

"On the one hand, the labour government says it is committed to improving care for older people, while on the other NICE is blocking access to treatment which would help them retain their independence and dignity. This is botched policy making at its worst."

Move to boost openness on NHS drugs by NICE

The labour government's medicines advisory body will from this autumn open to public scrutiny the work of the committees that decide whether the health service should pay for new drugs. In a ground breaking move to boost transparency, Sir Michael Rawlins, the chairman of the National Institute of Health and Clinical Excellence (Nice), told MPs that the action marked the latest in its efforts to boost transparency and that it had been a matter of "regret" that its committees had previously met in private.

While the agency's decisions are always made public in written form, Mr Rawlins conceded that it was useful to observe the discussion rather than simply reading about it afterwards.

His announcement was made on the first day of an inquiry launched by the House of Commons' health select committee into the operations of Nice, the second since it was launched in 1999 to advise the government on the efficacy and cost effectiveness of new medicines.

It comes at a time of growing criticism of Nice by pharmaceutical companies and patient organisations after a number of rulings that advised against the NHS paying for drugs for patients. In the case of an Alzheimer's drug, this will lead to a judicial review next month over the agency's refusal to release information on how the calculations were made.

The new policy of openness would apply to the deliberations of Nice's five standing advisory bodies, which study drugs, treatments, surgical procedures and public health.

Andrew Dillon, Nice's chief executive, told the FT that the decision put it ahead of practices adopted by equivalent agencies in other countries.

But he cautioned that the agency was still considering some of the practical issues involved. These include changes to the five day review period given to interested parties before decisions are made public, and how to release price sensitive information such as approval of a drug developed by a listed company.

Sir Michael cautioned that while Nice could play a role in the Office of Fair Trading's proposals for a newvalue-based pricing mechanism for drugs in the UK, it would represent "a massive workload" and there were not enough health economists in the country to cope.

Department of Health officials came under criticism from MPs on the committee over the resources made available to local primary care trusts to implement Nice decisions, and the inadequacy of government powers to penalise them if they failed to do so. *GPs could save the NHS more than £200m a year by prescribing lower-cost but perfectly effective drugs, the National Audit Office said yesterday, while patients waste drugs worth at least £100m a year by not taking them.

From:
http://www.ft.com/cms/s/8a923270-04db-11dc-80ed-000b5df10621.html

Health Direct questions Sir Michael Rawlins's claim that he regrets that its committees had previously met in private when several drug companies are having to take the National Institute for Curbing Expenditure to court in an attempt to find out how it justifies it's cost beneafit analysis on drug useage.

On Nov 17, 2006 Health Direct posted: Drugs watchdog faces legal review- NICE's approach is irrational and flawed when a decision by the labour government's drugs watchdog to restrict the use by the NHS of Alzheimer's medication is to be challenged in court.

Two drug companies plan to apply for a judicial review of the way the National Institute for Health and Clinical Excellence reached its conclusion. NICE ruled NHS patients with newly diagnosed, mild Alzheimer's disease should not be prescribed the drugs.

To it's credit it "only" took that MPs three months to wake up to the increase in legal activities against NICE.

Earlier this year on 7 Feb 07 Health Direct posted :NICE faces inquiry by Commons MPs group when the Commons health committee announced terms of reference for a broad inquiry into the work of NICE, the National Institute for Health and Clinical Excellence.

The committee said it wanted to examine "why Nice's decisions are increasingly being challenged" after recent controversial recommendations that the NHS should not use certain costly cancer drugs and should restrict the use of drugs to treat Alzheimer's to those with moderate forms of the disease.

1.7m will have dementia by 2051

More than 1.7 million people in the UK will have dementia by 2051, costing billions of pounds each year, experts have forecast. The grim projections are based on the most up to date evaluation of dementia. Currently 700,000 - or one person in every 88 in the UK - has dementia, incurring a yearly cost of £17bn.

Professor Martin Knapp, of the London School of Economics, one of the report's authors, said: "This research highlights the desperate need for dementia to be made a national priority. Current levels of services and support for people with dementia and carers are clearly inadequate."

One in 20 people over 65 and one in five people over 80 has a form of dementia. Around two thirds of those affected have Alzheimer's disease.

There is no cure for dementia, and those with the condition need increasing care as the disease progresses.

'Piecemeal'

The researchers' investigations reveal caring for one person with late-onset dementia costs an average of £25,472 per year. Currently, the bulk of this cost is met by people with dementia and their families. Two thirds of these people live at home - either alone or with friends or relatives.

They said there were "marked variations" in the levels of provision and spending across the UK, and that care and support is "delivered piecemeal and in an inefficient fashion."

"Dementia is one of the main causes of disability later in life ahead of cancer, cardiovascular disease and stroke, yet funding for dementia research is significantly lower than these other conditions.

"Even delaying the onset of dementia by five years would halve the number of related deaths, saving nearly 30,000 lives annually."

'Intolerable strain'

Neil Hunt, chief executive of the Alzheimer's Society, added: "With every second ticking by, dementia costs the UK £539. We can't afford to ignore the true cost of dementia to society as a whole.

"We must tackle this huge challenge head on."

"We need to invest in dementia services, research, support and training and use what money is being spent more effectively. Planning now will save lives and money in the future."

He added: "This new research shows that the government is failing to support people with dementia and their carers.

"Dementia will place an intolerable strain on our health and social care system unless the right services and support are in place."

Older people's tsar Professor Ian Philp, who is currently preparing new guidance for local health and social care bodies on early intervention and support for people with dementia, said: "This is a significant report that highlights the key issues around dementia and its economic impact."

From:
http://news.bbc.co.uk/1/hi/health/6389977.stm

Health Direct notes that Alzheimer sufferers and their carers lives are currently bearing the brunt of the NHS cash shortages.

On 11 Oct 06- in National Institute for Curbing Expenditure (NICE) blights thousands of Alzheimer sufferers we posted that NICE has been renamed by NHS doctors as the National Institute for Curbing Expenditure after it's latest edict to ban the funding of Alzheimers drugs costing only £2.50 a day- which will effect hunderds of thousands of sufferers.

"This blatant cost-cutting will rob people of priceless time" said Neil Hunt of the Alzheimer's Society.

The backlash against this ruling by the National Institute for Curbing Expenditure led to our posting on 17 Nov 06- Drugs watchdog faces legal review- NICE's approach is irrational and flawed.

A decision by the Labour government's drugs watchdog to restrict the use by the NHS of Alzheimer's medication is to be challenged in court. Two drug companies plan to apply for a judicial review of the way the National Institute for Health and Clinical Excellence reached its conclusion. NICE ruled NHS patients with newly diagnosed, mild Alzheimer's disease should not be prescribed the drugs.

NICE faces inquiry by Commons group

The Commons health committee has announced terms of reference for a broad inquiry into the work of NICE, the National Institute for Health and Clinical Excellence. The committee said it wanted to examine "why Nice's decisions are increasingly being challenged" after recent controversial recommendations that the NHS should not use certain costly cancer drugs and should restrict the use of drugs to treat Alzheimer's to those with moderate forms of the disease.

The committee said it wanted to know "whether public confidence in the institute is waning, and if so why", and said it would be looking at both Nice's evaluation process and the appeal system.

At the same time it will compare the work of Nice with that of the body that is roughly its Scottish equivalent. In some cases the latter has approved treatments that Nice has rejected.

The pharmaceutical industry's concerns that the NHS fails fully to implement Nice's recommendations when it does back new treatments and procedures will also be addressed.

The committee said it wanted to look at "which guidance is acted on, which is not and the reasons for this".

Nice is currently facing a judicial review backed by pharmaceutical companies and the Alzheimer's Society over its decision on Alzheimer's products.

The society said yesterday that the inquiry "should put a long-overdue spotlight on Nice's methods" and the "glaring absence" of an independent appeals process.

http://www.ft.com/cms/s/659096bc-b32b-11db-99ca-0000779e2340.html

The Commons health committee's whilst welcomed by Health Direct is long overdue.

On Fri 17 Nov 06 we noted that the Drugs watchdog faces legal review- NICE's approach is irrational and flawed when a decision by the Labour government's drugs watchdog to restrict the use by the NHS of Alzheimer's medication is to be challenged in court. Two drug companies plan to apply for a judicial review of the way the National Institute for Health and Clinical Excellence reached its conclusion. NICE ruled NHS patients with newly diagnosed, mild Alzheimer's disease should not be prescribed the drugs.

Neil Hunt, chief executive of the Alzheimer's Society, said: "This blatant cost-cutting will rob people of priceless time early in the disease and later clinicians will have no choice but to use dangerous sedatives that increase the risk of heart disease and stroke."

He said there had been "fundamental flaws" in NICE's appraisal process, and called on the government to step in.

Jonathan Ellis, senior policy manager at the charity, added: "It cannot be right to allow the health of thousands of older people to deteriorate on the altar of cost.

"On the one hand, the labour government says it is committed to improving care for older people, while on the other NICE is blocking access to treatment which would help them retain their independence and dignity. This is botched policy making at its worst."