How the NHS won‘t give mother life extending cancer drug

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How the NHS won‘t give Bonnie a cancer drug that will extend her life – yet spends millions on treatments that don‘t work

Bonnie Fox was denied a vital drug on cost grounds

Bonnie Fox is dying. In April 2015 she gave birth to Barnaby, her first child. Four months later her joy turned to horror when, after experiencing problems breastfeeding, she was diagnosed with advanced and incurable breast cancer.

That was 19 months ago. Since then Bonnie, 39, has been through six months of debilitating chemotherapy and is now on the twin ‘maintenance’ drugs, Herceptin and Perjeta.

For how long is anyone’s guess — ‘the longest I have heard is 12 years, but I have also heard of women for whom they’ve stopped working after a year’, says Bonnie, from Croydon, Surrey.

Juggling treatments and baby-care, Bonnie has returned two days a week to her demanding job as a project manager, and in June last year she married her partner and Barnaby’s father, Ash, the manager of a Waterstones book store.

Now she has one all-consuming ambition: to live long enough to be there for Barnaby’s first day at school.

Her best hope of that is an ‘end-of-life’ drug called Kadcyla, which ‘would buy me more time with my little boy . . . with Kadcyla I might even see him get to school, which, for me, would be a huge milestone to reach’.

But Bonnie can’t have Kadcyla. On December 29, the National Institute for Health and Care Excellence (NICE) announced that, at a cost of £90,000 for each of the 1,200 patients who, like Bonnie, could benefit from the drug, the price was ‘too high in relation to the benefits it gives for it to be recommended for routine commissioning in the NHS’.

‘Cheated once’ by fate, Bonnie says she now feels ‘cheated again: I was relying on that drug’.

Then she read the news that the NHS is paying silly money for other drugs which, with joined-up negotiating, it could be getting for far less.

As much as £380 million a year is being wasted by GPs alone because they’re paying over the odds for drugs that have had their prices hiked by pharmaceutical companies, according to Dr Andrew Hill, a senior research fellow in pharmacology at the University of Liverpool.

The fault, he says, lies with NHS England for failing to track and act over these price hikes.

And that’s just prescriptions in the community in England. Factor in hospitals and all prescribing in Scotland, Wales and Northern Ireland, says Dr Hill, and ‘I wouldn’t be surprised if we’re talking about a billion pounds here in overcharging’.

Dr Hill’s team analysed prices paid for 300 drugs from 2011 to 2015. The biggest price rise they found was the 2,340 per cent increase in the cost of the thyroid drug carbimazole, which cost the NHS an extra £29.8 million in 2015. The cost of the antidepressant drug nortriptyline went up 419 per cent in the same period, landing the NHS with an additional bill of £25.5 million.

‘You would think the NHS would be able to control this,’ Dr Hill told Good Health. ‘This is such an easy opportunity to save money.’

And when you consider the hopes of patients such as Bonnie, this waste is simply immoral.

‘I’m very pro the NHS, it’s been wonderful to me and my family, and I do appreciate it has so many conflicting demands,’ says Bonnie. ‘But when I hear about wastage like this, it is so frustrating.’

One of the many ironies of waste is that while some patients are being denied treatments the NHS can’t afford, others are getting care they don’t need.

As Professor Terence Stephenson, chairman of the Academy of Medical Royal Colleges, has put it: ‘One doctor’s waste is another patient’s . . . lack of treatment.’

The healthcare think tank, The King’s Fund, has highlighted 16 NICE guidelines about sticking to treatments that actually work which, if followed across the NHS, could save £1.9 million per 100,000 of population — in England alone that’s a saving in excess of £1 billion.

Some of the useless, wasteful treatments and procedures given to patients include X-rays for diagnosing lower back pain, and a plaster cast on small wrist fractures in children.

These ‘will heal just as quickly with a removable splint’, according to a report published last October by the Academy of Medical Royal Colleges. The academy published a list of 40 treatments and procedures ‘of little or no benefit to patients’, but costly to the NHS.

For example, it said, tap water ‘is just as good for cleaning cuts and grazes as saline solution’.

Sometimes these needless — and wasteful — treatments can do more harm than good. As reported in the Mail last month, 800,000 people in the UK have been on antidepressants for two years or more, with no clinical reason for taking them.

Similarly, an estimated 250,000 people have been on highly addictive tranquillisers for months or even years, despite clear official guidance that no one should take them for longer than four weeks.

Apart from the financial cost (the combined bill to the NHS of the over-prescription of antidepressants, tranquillisers and opioid painkillers may be £160 million every year) there is the human cost to the thousands left to struggle alone with dependency and withdrawal.

Chris Ham, chief executive of The King’s Fund, says that while evidence suggested the NHS was ‘one of the most efficient health systems in the world’, there is ‘still significant scope to improve productivity and reduce waste’.

With the NHS facing ‘huge financial pressures’ it was ‘essential to focus on getting the best possible value for patients from every pound spent . . . for example, through addressing the overuse of certain drugs and treatments or [ensuring] patients are seen faster and don’t need to stay in hospital for so long.’

More galling, perhaps, is the money wasted on the significant variation in executive pay and perks. Take John Adler, chief executive at University Hospitals of Leicester NHS Trust. From just over £245,000 in the financial year to 2015, his total salary and pension package almost doubled the following year to a whopping £485,000 — an astonishing increase of almost 98 per cent.

Yet the trust’s financial review for that year conceded, it had ‘not met all of our financial and performance duties for 2015/16’ and it recorded a deficit of £34.1 million.

What’s more, a Good Health investigation last month revealed Adler’s trust was one of the ten with the largest number of medication errors in NHS England — 2,449 in 2015, causing harm to patients in 185 cases.

In most cases, such errors were blamed by experts on unsafe staffing levels among nurses.

The trust says Adler gets the going rate for the job. Tell that to the chief executive at Leeds Teaching Hospitals NHS Trust, who has almost 3,000 more staff to manage than Adler’s 14,000, yet gets a more modest £272,000 pay-and-pension package.

It’s a similar story at Sheffield Teaching Hospitals NHS Foundation Trust, where the chief executive struggled by on £250,000 less than Mr Adler and has 2,000 more staff to manage.

Mr Adler’s not the only senior manager doing well. A survey of boardroom pay in the NHS last year found that 355 trust directors in England received average salary increases of 2.3 per cent — considerably more than the 1 per cent pay cap imposed on nurses since 2010.

A spokesman for NHS Improvement, the organisation that oversees trusts, said that while the NHS ‘needs strong and capable leaders to meet the challenges it faces’, when it comes to executive pay levels ‘we expect trusts to exercise restraint and we strongly discourage new appointments at the highest pay levels’.

Yet another form of waste that costs the patient and the NHS dear is infection rates. Infections cost money because of the extra surgery and care involved. Infection rates vary wildly, for no obvious good reason. And so do other costly things.

In September 2016, Public Health England identified 102 inexplicable ‘unwarranted variations’, many of which were costing the NHS money. For example, it found that for no obvious reason, the number of days patients being kept in hospital after fracturing a thigh bone ranged from ten to more than 30.

The longer stay, which simply isn’t necessary, increases the risk of contracting hospital infections and blocks beds badly needed by other patients.

And the NHS is in the grip of yet another hugely ambitious IT project, with hospitals poised to plough millions of pounds into new systems, converting hospitals, GPs and pharmacies to electronic records, online appointments and prescriptions to make the NHS paperless by 2020.

It’s as though the disastrous £10 billion National Programme for IT, introduced in 2002 with exactly the same ambitions and finally scrapped barely four years ago, never happened.

NEXT WEEK: How the NHS could save millions simply by saying sorry when things go wrong.

Filed under: General Problems