Category Archives: Research/Surveys/Petitions


English: This is an image of Donald Berwick, w...

Berwick Report another waste of NHS resources

Scratching around for any excuse to justify poor health care, latest imported US guru – Don Berwick (imported at vast expense) –  has come up with a report, saying much the same thing that he said last time he was overpaid to tell us what is wrong with NHS.

He says what everyone else has been saying, from Gerry Robinson, Lord Darzi et al, for past decade.  And yet still the Whitehall Mandarins sign their over more scarce NHS cash to pay for what any junior doctor or nurse could point out for free.

I dread to think what the bean counters will extract from this report.  Yes – money will be found for yet another crack-pot ‘initiative’. which is so silly that it reminds one of the Emperor’s clothes kid’s story.  And by the time the ‘initiative’ is quietly dropped, yet more of our money will have been wasted.

Have just come off the phone after 30 minutes with an A & E Matron, trying to explain to me why my care was so lacking last time I was in there.  This was second waste of hers and my time, over what was a simple case of incompetent admin.  But when will hospitals realise we don’t want apologies AFTER the event – what we want is basic good medical care whilst we are being treated.

Until that day, Whitehall mandarins will desperately scratch around for anyone who can be asked to prepare a “report” that might justify why they don’t have to get off their backsides and get down to old-fashioned work.  But I fear they don’t have the brains to recognise the truth if anyone tells them getting back to basics is what the NHS needs.

But then, taking a taxi down to any hospital and asking patients (when no staff are able to over-hear) what they think needs to be improved – that’s old fashioned.

Want to know what report we have paid for says?  

Dept Health has just issued press release today, saying

“Patients Will Have Confidence In A Safe NHS And Staff Will Be Supported To Make Safe Care The Priority
NHS staff should be supported to learn from mistakes and patients and carers must be put above all else in an attempt to make the NHS a world leader in patient safety, an independent report will say today.
Professor Don Berwick, a renowned international expert in patient safety, was asked by the Prime Minister to carry out the review following publication of the Francis Report into the breakdown of care at Mid Staffordshire Hospitals.
The report, led by Professor Don Berwick, follows five months of intensive work to examine the lessons for NHS patient safety from healthcare and other industrial systems throughout the world.
His four key findings are that:
The quality of patient care, especially patient safety, should be paramount
Patients and carers must be empowered, engaged and heard
Staff should be supported to develop themselves and improve what they do
There should be complete transparency of data to improve care
Recommendations in the report include:

The NHS needs to adopt a culture of learning

IF YOU WANT MORE, GET ON TO DEPT HEALTH.  They obviously have plenty of time to issue statements repeating the obvious.

Sign petition to stop discrimination for those claiming Disability allowances

Campaigners organise petition

We saw a lot of very enterprising, gutsy disabled people at the Paraolympic Games.

But some of those who rightly claim disability allowances and benefits, are finding their benefits are being cut.

Recently some sick and disabled people have been singled out and made to go through further tests and interviews to qualify for the benefits they need to live.  Some have been allowed to continue receiving benefits they have been awarded;  whilst others have been told to fill in massive forms – again.

“Proving” you have a disability has become a long drawn-out process, that can make life harder, not easier, for disabled people.  And for those who have already filled out the long and intensive pages of questionnaires, it is cruel to ask them to go through this again.

To make matters worse, this week found the government’s new approach to “testing” people isn’t working. The campaigning organisation 38 Degrees say “As many as 100,000 people could have been denied the money they needed, and put under pressure to work when they can’t.”

Mistakes galore

As 38 Degrees say, Atos, the multi-million pound private company that delivers these tests for the government, has been getting away with making big mistakes. 38 Degrees reckons their errors may mean around 100,000 people were deemed “fit to work”, when they weren’t. Yet despite this terrible performance, Atos have hardly paid a penny in fines. In fact, they’ve made enough profit to sponsor the Paralympics next week.

So as politicians get ready to stand on the sidelines and applaud Britain’s Paralympians, let’s send them a powerful message: don’t forget your responsibility to the rest of the UK’s disabled people – start making Atos pay for its mistakes.

38 Degrees are asking readers to sign the petition now to tell Iain Duncan Smith, Minister for Work and Pensions, to stand up to Atos and sort out disability benefit tests:

Don’t ignore disabled people’s contributions

The Paralympics are one reminder of the value that disabled people add to life in the UK. But for many disabled people, finding work is impossible. Sometimes that’s because of the nature of their disability, and sometimes its because workplaces don’t try hard enough to include them.

When someone has a disability that prevents them from working, they deserve proper support they can rely on. That support shouldn’t be taken away at a moment’s notice because of inaccurate tests. As politicians get ready to support Team GB’s Paralympians over the next fortnight, let’s make sure they start treating the rest of the disabled people living in the UK with the respect they deserve.

The government has the power to hit Atos where it hurts: financially. They can stop awarding contracts, set higher targets and fine them for poor performance. If enough of us sign the petition demanding this happens, then the government will be forced to hold them to account.

Welsh Disability Forum

On their website the Welsh Disability Forum makes it very clear what Welsh members think of Atos – and goes on to say that another contract for assessing disabilities has been awarded to Capita.

Some of you may shiver when you hear that name – long associated with other NHS contracts.  Private Eye has written frequently about this company, but places an R after the initial C – showing what they think of them!

Should you have a Mammogram?

Cancer Screening – have your say


English: SAN DIEGO (Sept. 22, 2008) Lead Mammo...


There is heated debate in some quarters over benefits or problems caused by Mammograms, with experts taking opposing views.  Recently I attended one debate where world-renowned experts were one step away from an Olympics-style boxing match – it became so heated.

There is an increasing recognition that people should be provided with what they need to make an informed choice themselves about cancer screening, including balanced information about benefits and harms.

Currently, Professor Amanda J Ramirez, National Cancer Action Team  is leading a  review, engaging clinicians, academics and charities, who have helped us develop a proposed approach.  This has been published on

Ramirez is keen to engage YOU in the debate over the coming months. The website will give members of the public an opportunity to have their say about the approach, the type of information that should be available and how it should be presented.  It is well worth taking this survey, which should take about ten minutes, as the answers will be noted and form  help the Team get the views of the public on the approach.


More and more research is showing breast screening can possibly cause harm as well as benefit.  Ever since the pan-European cancer charity Europa Donna held a fascinating debate in London on screening pros and cons, people have been asking questions.  And major organisations have typically stood back and offered platitudes rather than action.

Dept. of Health, NHS, Breast Cancer Charities, cancer hospitals, professionals, etc. have done what they do best – sat on the fence.

Brave souls, from cancer patient Mitzi Blennerhasset,  to one of world’s leading breast cancer surgeons, Prof. Michael Baum, have been calling and calling for an investigation – for more information – for the truth to come out – but finally Richards, the ‘Cancer Czar’,  has been goaded in to action, come off his comfy fence, and ordered a review.

Meanwhile Mitzi has posted a string of information on her website,

The debate was aired here first

It takes guts for a pioneer, lauded for his work, to go on looking at facts – then come out and say further research says “do the opposite”.

Basically, this was what Michael Baum has done. 

Over two years ago, on a night when there was thick snow,  enough interested people managed to fight through the drifts to hear a fascinating debate, put on by Europa Donna.

The debate was between various luminaries of the breast cancer world – and got so heated that the snows were well on their way to be melted.  Michael was there to explain why, having set up the NHS Breast Screening programme, he now advocated caution – and was telling people that the programme should provide much more information, and to urge further investigation into the results.

Of course, if the NHS ‘approves’ something, woe betide anyone who sensibly points out that once a programme is rolling, it might throw up anomalies.  The NHS has approved – so you don’t questions this.  Well, not if you don’t want the medical establishment to close ranks.

Michael doesn’t care; his position in the surgical oncology world is so eminent he doesn’t need to worry.  But it took guts for Mitzi to question the medical establishment, and demand better treatment for cancer patients.

It should be OUR personal choice if we want a mammogram, or not.  Not dependent on fighting the system or paying to go privately.  But to make this choice we should be given the facts, and let’s hope Mike Richards pulls his finger out and gets on with the review.

Here is an extract of Mitzi’s research, up on

*COCHRANE LEAFLET: screening for breast cancer with mammography


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NHS Petition

What Next for the NHS?


38 Degrees, the campaigning organisation, wants your views.

Its members have been discussing what to do next to keep campaigning for the NHS.



Now they are calling for those interested to decide what priorities should be.  You can join in by giving your comments on these issues on

Rightly there are worries about the NHS contracting out services to private providers, but before we condemn these across the board we should remember that there are some very good initiatives, such as the areas where chemo patients can be given infusions at home;  and it is private providers who have worked out how this is practical (as well as cheaper).

There are probably many NHS staff who have been made redundant, but are ideally placed to see where money can be saved and a better service provided.

We should keep in mind that MORE patients must be involved in commissioning;  to keep an eye on where the money is going to be allocated.  And

  1. 1. Campaign for local GPs to use their new powers to protect the NHS
  2. Lansley has put groups of GPs, called Clinical Commissioning Groups (CCGs) in charge of huge decisions about spending on local healthcare.  Do we want to organise local petitions and events asking CCGs to take a stand against privatisation?
  3. There is a question about do patients want to hire lawyers to help write policies to allow CCGs to make the NHS their ‘preferred provider’?   But surely patients should be able to tell their GPs if they want them to buy in to a private provider, or use an NHS facility?  Just because something is run by the NHS, doesn’t mean that it is the most efficient use of resources (see how money is use in NHS Radiotherapy units).
  4. Campaign if and when things start to go wrong in a specific local area, by sounding the alarm and calling for a change of plans  (patients could organise campaigns focusing on specific areas where services are getting worse, or where a private company is ripping off the taxpayer).
  5. 3. Create a people-powered NHS watchdog
  6. There is going to be created HealthWatch boards, Patient Participation Groups, Foundation Trust Governors and CCGs.  Altogether five layers of administration replacing the current three layers.  Do we want this?
  7. 38 Degrees make the novel suggestion that they could train members to do their own local investigations into problems they find out about, and create an online database to get all the information about problems with the NHS together.  This sounds like an eminently sensible suggestion: pay patients to use their time to help save the NHS money.  I bet readers have plenty of suggestions, which hospitals will never listen to.
  8. 5. Deter private companies from encroaching on the NHS.
  9. Lift the lid on corporate healthcare sponsorship of NHS events or public events like the London Marathon
  10.  Support NHS providers if private companies try to challenge them in the courts
  11. Make sure big private companies aren’t the only alternative to NHS service providers
  12. Help ex-NHS staff set up mutuals or co-ops to compete for business
  13. Make sure CCGs consider these not-for-profit alternatives when choosing providers



These are some of the comments on 38 Degree Website:

  1. There is pressure for private providers to be subject to the same laws to provide information under the freedom of information act as NHS 0rganisations do. At present even Landsley could not get the info on breast implants he needed from private companies to sort out the pressure on the NHS to replace them for free.
  2. Advertise the work and ethos of 38 Degrees in professional journals to highlight that there is somewhere for staff to have their say and find out what others are saying. Too many NHS staff are afraid to speak out in my experience but something as innovative as this might get more people prepared to say where things are going wrong. It’s staff on the frontline who really know what possible and what is necessary to improve patient care, and can identify where wasteful practices could be changed. ( Nurse, midwife and Health Visitor, in the NHS since the 70’s)
  3. In USA people can’t believe how many UK residents don’t turn up to doctors appointments, knowing if we had to pay for are appointments many more would turn up (we have to pay if you don’t turn up for a dentist appointment).
  4. Do we take the NHS for granted because we don’t have to pay for any healthcare/hospital treatments?
  5. Why has Andrew Langlsey not yet released the NHS papers for scrutiny, despite being ordered to do so by a High Cout Judge.? It is of great concern that there is not greater transparency.


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Air Ambulances shouldn't have to pay VAT on fuel

Return VAT on Air Ambulance fuel payments.


New North West Air Ambulance 5

Air Ambulance





With the Budget looming, the Air Ambulance Service wants 100,000 signatures to make the Government review this unfair tax on saving lives.


The Air Ambulance Service is forced to meet rising fuel prices year on year including VAT.

This Service has saved successive governments millions and millions of pounds funded by charitable donations given by the general public to run what has proven to be an essential service.

Whilst the Lifeboat Service has been exempt from VAT on fuel costs since 1977, a similar privilege has not been afforded to the Air Ambulance Service.

Sign the Petition

You can help the call to the government to have an urgent review of this situation.

Sign the petition calling on the government to return in the form of grants to Air Ambulance Service providers all the future VAT which the Treasury collects from them, so that the Air Ambulance Service is in practice exempt from paying VAT in the same way as the Lifeboat Service.

The good news is I was sent details of this petition this morning, when there were 15,000 signatures.

Currently there are  60,669 signatures – will yours be the 100,000th that forces the Government to listen?


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Wales wants to ban smoking anywhere in hospitals


The Welsh Cancer Charity Tenovus wants to ban smoking at Welsh hospitals, and ask anyone who lights up a fag politely to do this outside the hospital premises.

Some Welsh hospitals have even dismantled the shelters erected to protect smokers from bad weather. And this video shows the dismantling, plus some not very happy comments from smokers

Cancer Research UK agrees, and is mounting a campaign under the banner of

The answer is plain


This is the title of  Cancer Research UK’s campaign to stop youngsters taking up smoking.

At a young age, choosing which brands you consume is an important way to create an identity. And they think kids can live without tobacco branding.

Plain packaging means removing all branding from cigarette packs. This means that all packs, from all tobacco brands, will look the same.

This won’t stop everyone from smoking, but it will give millions of kids one less reason to start.

BUT – it’ll only happen with your support. Act now while the Government is listening by  clicking on

and signing the petition.

Plain packs

This campaign is about smokers and non-smokers, coming together to protect the next generation from taking up the habit in the first place.

As Mary from Preston, a previous smoker comments, “I remember how important cigarette brands were to me when I first started smoking. That was 40 odd years ago: it took me several attempts to give up such an addictive habit”.

So please show your support to tell the Government that you support the plain packaging of tobacco products.

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Is Lansley deaf?



The National Health Service Norfolk and Norwic...

Image via Wikipedia


We have all tried to tell Lansley he is going about NHS reforms using a sledge hammer that is out of control – but he doesn’t  seem to be listening.

LaLa wanders around with a smug smile on his face, but when brave campaigners have tried to put their point across, he just pushes past without paying any attention.

Two years ago, I was one who said that the NHS needed to save money, and welcomed the idea of reform.  One only had to step over the doorstep of almost any NHS centre to realise that joined-up thinking was often lacking, and stupid rules and regulations were costing money.

BUT – living in London, I began to realise that the Post Code Lottery is rife;  ‘new’ ways of saving money are designed to save money for a NHS centre, but not for the service overall, GPs are sitting on referral letters – I went to mine for a referral in August;  in October I asked what was happening and was asked, “do you still want it?”.  The referral was finally sent off on January 25th.

So there is ONE FINAL petition that you might like to sign.  It doesn’t cost anything – and might be the proverbial straw – miracles sometimes happen!

Oral Supplements – are they any good?

Or  do they give little help to Cancer Patients?


Various pills

Image via Wikipedia



The Journal of the National Cancer Institute recently published a  meta-analysis of oral nutritional supplementation in cancer patients.

They found no significant improvement in mortality, weight, or energy consumption.

However, some measures of quality of life were improved with nutritional supplementation, although included studies were heterogeneous and generally not of high quality.

Supplements are something that come into every cancer patient’s life.

  • Well-meaning friends say “you should be taking xxxxxx”
  • Advertisements bombard you with carefully-worded advice that makes you question if you should be taking X – and paying for it.
  • And you want to do the best for yourself to help your recovery

And meantime a huge industry coins in the money – but is what they are making necessary?

Latest Research

If you are serious about these supplements, then here is some serious information from MedPage and other sources.   A bit dry, but what The Journal of the National Cancer Institute reports is useful.  They have no axe to grind, but their report on surveys and research into this area says:

“Malnourished cancer patients had some improvement in quality of life (QOL) but did not live longer when they received oral nutrition supplements”, a meta-analysis showed.


An analysis of 13 trials found that the only persistent benefits from the supplements related to certain aspects of QOL, including emotional function, dyspnea, loss of appetite, and global QOL, investigators reported online in the Journal of the National Cancer Institute. A preliminary analysis showed improved weight and caloric intake, but the benefit disappeared after adjustment for differences in the studies examined.


“The findings suggest that oral nutritional interventions have no effect on survival, and that the effect on body weight and energy intake is inconsistent, but that statistically significant improvements in some aspects of QOL may be achieved,” Christine Baldwin, PhD, of King’s College London, and co-authors wrote of their findings.


“This review identified few studies, some of which were of poor quality; therefore, more research is needed to characterize the benefits of oral nutritional support in patients with cancer.”

Difficulty getting accurate data


Malnutrition and weight loss affect many cancer patients, reducing the odds of objective response to treatment and survival and leading to poorer QOL. Whether a causal link exists has not been demonstrated, the authors noted. Nonetheless, clinical guidelines in North America, Europe, and Australia recommend prompt attention to cancer patients’ nutrition.


The National Institute for Health and Clinical Excellence (NICE)  in England has recommended oral nutrition support for cancer patients who can swallow. However, that recommendation has its origin in data obtained largely from studies that did not involve cancer patients, the authors continued.


In an effort to identify and describe potential benefits of oral nutrition support in cancer, Baldwin and colleagues performed a meta-analysis of clinical trials conducted from 1998 to February 2010. The final analysis encompassed data from 13 randomized trials involving a total of 1,414 patients.


The authors acknowledged that the studies included in the analysis varied substantially in quality, clinical characteristics, and statistical methods.


The trials involved patients with a variety of cancers. All of the studies’ participants were receiving cancer treatment, and all trials compared oral nutrition supplements against routine care.


A preliminary analysis showed a significant 1.86-kg higher weight in patients who received supplements and a 432 kcal/d difference in daily energy intake (P=0.02 and P<0.001, respectively). After accounting for heterogeneity among the studies, neither difference remained statistically significant.


Analysis of survival showed no difference between the intervention and routine-care groups (RR 1.06, P=0.43).


After adjustment for heterogeneity, nutritional intervention favorably affected several aspects of QOL:


Emotional function, P=0.02
Global QOL, P=0.02
Dyspnea, P<0.001
Loss of appetite, P=0.03


The analysis illustrates how research into nutritional support for cancer patients is “fraught with limitations; hence, it is challenging for clinicians to apply these results to everyday practice,” authors of an accompanying editorial wrote.  In other words, manufacturers can publish their own studies – but there isn’t the money available for serious research to qualify these studies.


“Selecting the right patient for nutritional interventions, both in everyday practice as well as in the clinical research setting, cannot be overstated,” according to Ann O’Mara, PhD, RN, and Diane St. Germain, RN, MS, of the National Cancer Institute.

So what should we do?

Every major institution says you MUST discuss anything you take with your medical team.  Frequently their response is on the lines of “if you want to, take this”.  This is NOT approving the effects of the supplement – merely saying it won’t do you any harm.  But neither does eating sensible food do you any har, and most dieticians will say that eating a varied and sensible diet will give you all the vitamins etc. a body needs.


As the report  says, “Oral nutritional supplements are often recommended likely, in part, because they are perceived to carry no harm, but who will likely benefit remains an important question.

Doctors say we know our own bodies best.  So if you know a supplement is doing you good, and your doctor approves, go for it.

Otherwise, gnaw on some raw veggies instead – much cheaper and just as good, if not better for you.



Authors of the article and the editorial had no relevant disclosures.


Primary source:   Journal of the National Cancer Institute of USA
Source reference:
Baldwin C, et al “Oral nutritional interventions in malnourished patients with cancer: A systematic review and meta-analysis” J Natl Cancer Inst 2012; DOI: 10.1093/jnci/djr556.


Additional source: Journal of the National Cancer Institute
Source reference:
O’Mara A, St. Germain D “Improved outcomes in the malnourished patient: We’re not there yet” J Natl Cancer Inst 2012; DOI: 10.1093/jnci/djs031.



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Cameron hosts Mad Hatters Tea Party

Were you invited to

English: The Mad Hatter, illustration by John ...

Did Downing Street host these madmen?

Cameron and LaLa’s Tea Party?



Well, it wasn’t for the likes of those who disagree with LaLa and Cameron.  Those invited had been cowed by the Dept. Health’s political roller coaster.  Or perhaps might make money under the NHS reforms.

Sore you didn’t get an invite?

Vent your anger by adding your name to the government e-petition here:

If there is a problem clicking through, please cut and paste.


This  petition set up by a doctor  has now gathered 150,000 signatures (strange – Cameron says doctors are the ones keen on LaLa’s NHS reforms).

It only needed 100,000 signatures to force a debate – so one wonders how many more will be needed to make Downing Street take notice? The more names on it, the more pressure on the government and MPs to rein in Andrew Lansley’s plans.  And hopefully 38 Degrees will be able to take this forward.


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Why cheaper drugs may not be good news for patients

English: Methylphenidate packages from several...



Major  drug companies

facing  job losses

and closures


For years it has been known that drug companies have a very, very close relationship with Doctors and the NHS.

Some would have said too close, especially those cancer patients who suffered from drug side effects and found doctors surprisingly unhelpful.

  •  But there were advantages.  Drug companies needed help from NHS to run clinical trials.
  • Patients who took part in clinical trials were told that they had much better chances.
  • And the end result was cancer survival rates generally improved.

In the ’80s and ’90s, people and politicians began to talk openly about cancer.  Drug companies realised there were billions to be made in producing drugs that helped prolong the life of cancer patients, and started to invest heavily in research and trials, searching for the holy grail of cancer treatment.

Drug companies became the darlings of the stock market.  Yes, the initial outlay was stupendous. But, if a pharmaceutical manufacturer came up with a drug that could be prescribed to treat cancer and prolong life, this was almost a licence to print money.  Don’t knock it though – if you have a company pension it was probably a big investor in drug company shares, seen as ‘blue chip’ investments.

But now there is a new problem looming:  cheap Generic Drugs.

Rise of Generic Drugs

A generic drug is a drug defined as “a drug product that is comparable to brand/reference listed drug product in dosage form, strength, route of administration, quality and performance characteristics, and intended use.

A generic drug must contain the same active ingredients as the original formulation. According to the U.S. Food and Drug Administration (FDA), generic drugs are identical or within an acceptable bioequivalent range to the brand-name counterpart with respect to pharmacokinetic and pharmacodynamic properties.   The FDA’s use of the word “identical” is very much a legal interpretation, and is not literal.

This has meant that generic drugs can have cheaper ingredients, which can sometimes react badly on patients.  But because they are cheaper, NHS doctors will always prescribe a generic drug if one is available;  and where patients have to buy their own drugs, they will tend to buy the cheaper version.  And many insurance companies will only pay for the cheaper version.  Hence drug companies will lose out.

Most drugs are patented to ensure that the company that develops them doesn’t lose their commercial advantage by others copying the drug.  Copying would be fairly easy to do;  any company developing a drug has to let the health watchdogs know what the drug was made of – making it easy to copy a successful drug – if it weren’t for patents which make this almost impossible, due to strict legal controls.

But drugs developed during the heydays of research are now coming to the end of their 20- year patent protection, enabling other companies to copy the formula.

So who is going to be first to suffer?

This problem has been growing, and drug maker AstraZeneca has just announced that it will cut another 7,300 jobs in Britain.

This comes a year after Pfizer announced it would close its UK research site.

There are still large profits being made, but there are pressures on the whole industry.

Jonathan de Pass, chief executive of the company EvaluatePharma, says  “It’s just an immensely challenging time for big pharmaceutical companies. Their whole business model is under huge strain – the whole research model is under pressure.”

What about new drugs?

Not so easy.   As Prof.  David Phillips of the Royal Society of Chemistry told the BBC, “It’s a fact that the easy targets, in the body, for the production of drugs have, essentially, all been used up.

“The cost of producing new pharmaceuticals, new drugs, is so astronomical now that it only takes one failure of a drug which doesn’t perform as well as was expected or has side effects – one withdrawn from the market that way can really cripple a company.”

A year ago AstraZeneca wrote down £281m when it discontinued research on Motavizumab , a respiratory medicine. In February 2011, late-stage clinical trials were halted on the prostate cancer drug zibotentan.

Patents usually last 20 years, during which market exclusivity allows companies to recover the research and development costs and make a profit. However, once the patent expires any company can make a “generic” version of the drug and sell it for a tiny fraction of the price.

In the USA the biggest-selling drug in the world – Lipitor (the cholesterol-lowering statin) earned Pfizer £8bn two years ago.  The patent expired in November last year and cheaper alternatives are now on offer.

This could cause a problem for AstraZeneca, as it makes a statin called Crestor. Although its patent does not run out until 2016, it has been suggested that cheap Lipitor could damage sales.

“It’s still early days, but people are going to be prescribed generic Lipitor – that is bound to have an effect,” said Mr De Pass.

So what can be done to ensure continued research into drugs of benefit to patients?

Prof.  Phillips said the key would be research on the fundamental science: “We need to get a stimulus to get that research done in the small companies and in universities so the bigger companies, later down the line, can pick up the promising leads and develop them from there.”


Case Study:  when a cancer patient at Chelsea and Westminster Hospital asked for Monofer (an iron-infusion for aneamia) instead of the one prescribed, which the drug makers said was more suitable for cancer patients.  The patient offered to pay the difference in price;  the hospital refused.  So the patient had the less-suitable drug infused, and six months down the line it has cost the hospital well over £1,000 to pay for consequences of giving wrong infustion – and they have now had to administer Monofer.

When Alan Johnson was Labour Minister of Health, he was made to agree that patients could co-pay for difference in drug costs.  However, this climb-down seems to have been forgotten, so it is up to patients to point out the law to the NHS, and if they would rather have a more expensive drug – they should be allowed to pay the difference.

Pension plans

Almost all pension plans will be investors in drug companies.  They are some of the largest and most profitable in the world, so it makes sense for pension plans to invest in them.  However, if they start losing money, not only will patients lose out, but their pension plan payouts will too.

So what of the future?

Drug companies are beginning to realise that they will have to become more open when talking to patients.  In Britain, we have one of worst compliance records (taking drugs) in world;  oncologists don’t have time to deal with drug side effects, so patients give up and don’t take their drugs.

This is not only bad for patients (according to World Health Organisation French cancer patients on average live over four years longer than Britons), but as we die earlier and don’t take drugs, this affects the drug companies’ profits.

Eventually drug companies will realise that to keep up their profits, so shareholders will authorise reasearch costs for new drugs, they will have to consult more with patients.  When this happens, it will be a win-win situation for both parties – but don’t hold your breath!

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