Patients missing their appointments cost the NHS £1bn last year

The money wasted could have funded 1m more cataract operations or 250,000 hip replacements, says chief nursing officer

Patients in a waiting room at the Royal Free hospital in Hampstead, north London.
Patients in a waiting room at the Royal Free hospital in Hampstead, north London.

As the NHS struggles with budget cuts, soaring demand and staff shortages, almost £1bn is being wasted annually by patients missing appointments, figures reveal.

In response, England’s chief nurse has urged patients to cancel their NHS appointments in good time if they are not able to attend, in order to free up resources for those who need them.

The money wasted could fund 1m more cataract operations or 250,000 hip replacements, said Prof Jane Cummings, chief nursing officer for England.

Data released by NHS Digital revealed that in 2016/17 almost 8m hospital outpatient appointments were missed due to patients not attending, compared with 7.5m in 2015/16.

Jane Cummings, chief nursing officer for England.
Jane Cummings, chief nursing officer for England.

With each hospital outpatient appointment costing the NHS approximately £120 in 2016/17, it means almost £1bn worth of appointments were missed.

In addition, more than 9 million people were sent home from A&E in 2016/17 with just guidance and advice, which could have been obtained more conveniently from a pharmacist or by calling 111.

As the NHS celebrates its 70th year, Cummings is urging the public to rethink how they use it in the face of a growing funding crisis. Honouring appointments was a “small but effective way” to help, she said.

“With the NHS coming under pressure as never before, we are asking patients and the public to use the health service responsibly to help ensure that care is readily available for everyone who needs it,” she said.

“There are now more doctors, nurses and other clinicians available at the end of a phone to give advice and guidance to users of the 111 service.”

Some in the NHS believe that patients should be charged for missed appointments and Jeremy Hunt, the health secretary, hinted this was a possibility in 2015 before David Cameron, then prime minister, ruled it out.

However, steps were taken to inform patients of the cost to the NHS of missing their appointments after a study by Imperial College London showed that fewer appointments would be missed if people were given this information.

Simon Stevens, the head of NHS England, recently said its £110bn budget is not enough and called for an increase in funding.

His comments were backed up by the Health Foundation, the King’s Fund and the Nuffield Trust, who – following a joint analysis of NHS finances in England – calculated that the NHS needs £4bn more in 2018 to prevent patient care from deteriorating.

Nice approves life-extending drug for patients with incurable breast cancer

NHS doctors in England able to prescribe pertuzumab after price cut agreed with maker

Doctor looking at mammograms

A drug that can give women suffering from incurable advanced breast cancer an extra 16 months of life has been approved for general use in the NHS in England after a price cut was negotiated with the manufacturer.

The decision by Nice, the National Institute for Health and Care Excellence, to give the green light for NHS doctors to use pertuzumab, sold under the brand name of Perjeta by the Swiss drug company Roche, was enthusiastically welcomed by breast cancer charities.

Baroness Delyth Morgan, chief executive of Breast Cancer Now, said the benefits of the drug for patients with the aggressive form known as Her2-positive breast cancer were extraordinary.

“This is the best news patients with Her2-positive breast cancer and their doctors could have hoped for,” she said. “Perjeta is a truly life-changing drug and we are absolutely delighted and relieved that Nice has finally been able to recommend it for routine NHS use in England.”

Perjeta had been too expensive to be considered for NHS use by Nice, which approves or rejects drugs on the basis of cost-effectiveness. But recently NHS England has begun to intervene with the manufacturers over the fraught issue of the prices of new drugs. Last November, it announced it had struck a deal with Roche.

“While a long time coming, we’re thrilled that tough negotiation and flexibility by NHS England and Nice, and the willingness of Roche to put patients first and compromise on price, has again ensured thousands of women can be given more time to live,” said Morgan.

But she was concerned that women with metastatic breast cancer – which has spread to other parts of the body and is incurable – would not get the drug in other parts of the UK.

“While Perjeta will now continue to be the gold standard of care in England, it has never been routinely available in Scotland, Wales or Northern Ireland. This is the most effective breast cancer drug in years and we must urgently see equality in access for NHS patients across the UK,” she said. She called for other countries to negotiate a deal with Roche.

Roche said the decision ends several years of uncertainty over a drug that is approved for use in 19 other European countries including France, Italy and Spain. “We are extremely pleased that due to the collaborative approach Roche, NHS England and Nice have taken, Perjeta will now be routinely funded on the NHS for eligible patients with advanced breast cancer,” said Richard Erwin, general manager of Roche Products Ltd.

Nice decided not to approve a second drug for advanced breast cancer, fulvestrant, sold under the brand name Faslodex, which slows its progress by suppressing the hormones that feed it. Samia al Qadhi, chief executive of charity Breast Cancer Care, said “This closed door will be a blow to many diagnosed with the cruel disease.”

The NHS turns 70 this year, and it’s Britain’s greatest medical innovation

Our health service stands alongside other brilliant inventions, such as penicillin, IVF and artificial hips. We must make sure it is fit for the decades to come

The NHS will celebrate its 70th birthday in 2018, after a difficult decade since the global financial crisis culminating in one of the most testing years in our history. The terrorist attacks in London and Manchester, along with the Grenfell Tower tragedy, saw all emergency services, including NHS staff, respond with skill and bravery.

In 1948, at the NHS’s founding, there were no routine antibiotics, anti-cancer drugs or blood pressure treatments, and infectious diseases were common. This has all changed, thanks in part to British science, which has brought the world vaccination, penicillin, IVF, stem cell transplants, artificial hips and MRI scanners, and knowledge of the structure of DNA.

But our greatest innovation by far, with the most far-reaching impact on the health of our nation, has been the NHS. It embodies the British social conscience. Since resources are very stretched, some may question the funding model, and suggest the NHS is not fit for the future. Nothing could be further from the truth. Scientific advances mean it is needed more now than ever before.

Growing up in Africa in the 1960s, I dreamed of moving to Britain and working for its health service. Fulfilling that dream has been a huge privilege. As national medical director I have learned that the NHS will always need to change to match emerging science and shifting disease profiles, and to meet increasing demand within a set budget.

So in the next two years alone we’ll deliver cutting-edge genomic testing for personalised cancer care, a 10% reduction in hepatitis C deaths, and advanced proton beam therapy. And as individual treatments continue to change, so too must the way we provide services: hospitals and GP surgeries still look much as they did when the NHS was founded.

Over the next 12 months we will step up efforts to get different parts of the NHS working better together. Technology will play a part, with more appointments bookable online and greater access to patient records.

Already, in Rushcliffe, Nottinghamshire, extra support for care home residents means they go to A&E nearly a third less often and are almost a quarter less likely to need admission. In Dudley, West Midlands, doctors, nurses and others have worked together to reduce time spent in hospital by the equivalent of 9,600 bed days.

This year NHS bodies in eight places will come together with local councils and other organisations to work as complete care systems, with the needs of patients, not those of institutions, driving decision-making. Local councils can support the NHS through disease prevention via education, housing and transport policies, and social services can help keep people out of hospital. Rather than being the Trojan horse for privatisation that some critics may fear, this is a bold attempt to unite a fractured system and stop people being pushed from pillar to post.

Scientific progress means that soon we will be able to partially predict the future health risk of each child, and hence of the population at large. This science ratifies the wisdom of the founding principles of our NHS, where we share the burden of those risks and pool our money through taxation in order to treat each patient fairly. Our task now as a nation is to enable the NHS to properly adapt to medical advances and public expectations.

This is a challenge. The good news is that, as it heads into its 70th birthday year, we can say that the future of the health service is already in sight in parts of the country, but just not everywhere.

 Bruce Keogh is medical director of the National Health Service in England

Since you’re here …

… we have a small favour to ask. More people are reading the Guardian than ever but advertising revenues across the media are falling fast. And unlike many news organisations, we haven’t put up a paywall – we want to keep our journalism as open as we can. So you can see why we need to ask for your help. The Guardian’s independent, investigative journalism takes a lot of time, money and hard work to produce. But we do it because we believe our perspective matters – because it might well be your perspective, too.

I appreciate there not being a paywall: it is more democratic for the media to be available for all and not a commodity to be purchased by a few. I’m happy to make a contribution so others with less means still have access to information.Thomasine F-R.

Kamal R Mahtani: Using systematic reviews to reduce research waste—who really cares?

The global spend on biomedical research and development is estimated to be about $250 billion (£203 bn; €233 bn) each year—a not insignificant figure. In fact, it roughly equates to the amount that the UK government spends each year on its combined education, defence, and welfare budget.

Kamal R Mahtani

But suppose you heard that the UK government’s budget for education, defence, and welfare was being wasted and provided no public benefit at all—what would your reaction be? Surprise? Indignation? Anger?

Chalmers and Glasziou’s revelation that about 85% of biomedical research may be wasted should evoke at least as great an outraged response. This estimate of wastage is derived from a number of factors—including failure to conduct, describe, and publish research to standards that make the outputs useful. This is particularly concerning, given that much of this research is expected to provide some form of patient benefit.

Among the proposed steps to reduce this waste is a recommendation that new research should not be conducted until a systematic assessment of existing research has been performed. There are at least two reasons why this makes total sense. Why would you want to conduct a new study if the answer was already available? And, more importantly, if the answer was available already, would it even be ethical to enter participants into a new study when some might fare worse?

Some public funders of research, such as the UK’s National Institute for Health Research (NIHR), which manages an annual budget of about £1 billion for applied research, recognise the importance of systematic reviews in reducing research waste. As one example of this, new applicants seeking funding from the NIHR to support primary research must now ensure that their request is informed by knowledge of the existing evidence.

But what about other funders? The aim of a recent survey of the websites of 11 international research funding organisations was “to indicate the extent to which each organisation adopted waste reducing policies and processes.” The authors extracted information on whether the funder involved members of the public in setting research priorities; made full protocols for funded research publicly accessible; and had specific funding streams for methods research. The survey also identified information about how the funders supported the conduct of systematic reviews.

Although the authors reported that they used their judgment in the interpretation of their findings, they do also report that they checked the accuracy of their findings with each organisation. According to their survey results, only two of the funders, the NIHR and the Canadian Institutes of Health Research, had clearly dedicated streams to fund systematic reviews. The survey also concluded that only one funder, the NIHR, made it a prerequisite that all applications for support should be informed by a systematic review of the existing evidence.

Scientific, ethical, and economic reasons make it essential to conduct a systematic review of existing evidence before considering a new study. Failure to do this is simply poor practice. This recent survey shows that there is still work to be done to ensure that this principle is clearly and demonstrably supported. Given their large budgets and major influence on what does and does not get financial support, funding agencies have a particular responsibility to lead this initiative.

Kamal R Mahtani is an NHS GP and deputy director of the Centre for Evidence Based Medicine, Nuffield Department of Primary Care Health Sciences, University of Oxford.

Source: BMJ

Blind British man in world’s first operation to deliver modified DNA to his eyes

Eye surgeons carry out the operation 
A 29-year-old man with an inherited form of blindness has become the first in the world to receive groundbreaking gene therapy  

Thousands of people born with a faulty gene which makes them go blind have been offered new hope after a British man underwent the world’s first operation to deliver new DNA to his eyes and restore his sight.

Around 15,000 people in Britain suffer from x-linked retinitis pigmentosa, a deteriorating condition which brings a slow and irreversible loss of vision, and which is the leading cause of blindness in young people.

Loss of sight occurs because a gene responsible for maintaining the light sensitive cells at the back of the eye is missing half of its DNA code.

 But scientists can now replace the code using a groundbreaking technique which reprogrammes the gene in the lab, then delivers the healthy DNA into the eye, via a harmless virus.
Scientists used a harmless virus to transport the modified DNA to the man's eyes 
Scientists used a harmless virus to transport the modified DNA to the man’s eyes  

Last Thursday, a 29-year-old man became the first person in the world to undergo the procedure at Oxford Eye Hospital and is now recovering.

Robert MacLaren, Professor of Ophthalmology at the University of Oxford, who is leading the trial said: “He is doing well and now at home, but we will have to wait a few years to know if it has stopped his retina from degenerating.

“The effect of disease on families with retinitis pigmentosa is devastating and we have spent many years working out how to develop this gene therapy.

“Changing the genetic code is always undertaken with great caution, but the new sequence we are using has proven to be highly effective in our laboratory studies.

“The genetic code for all life on Earth is made up of four letters – G, T, A and C. In retinitis pigmentosa, however, half of the RPGR gene comprises only two letters – A and G.

“This makes the gene very unstable and prone to mutations, making it a lead cause of blindness in patients with retinitis pigmentosa. RPGR is vital for the light sensitive cells at the back of the eye.”

Robert MacLaren, Professor of Ophthalmology at the University of Oxford
Robert MacLaren, Professor of Ophthalmology at the University of Oxford

Retinitis pigmentosa affects 1 in 4000 people, with symptoms that typically appear between age 10 and 30. Night vision and peripheral vision go first, as the photoreceptors active in low light – the ‘rods’ – start to degenerate.

Eventually the condition affects the ‘cones’ – the photoreceptors responsible for central, detailed, colour vision, causing complete sight loss.

Doctors want to enroll at least 24 more patients in the trial to find out if the technique is safe and effective.

The combined NHS, University of Oxford and Nightstar gene therapy team
The combined NHS, University of Oxford and Nightstar gene therapy team

Never mind free tampons – what schoolgirls need is education about periods.

No other area of school life relies on free samples or branded teaching resources. So why, when it comes to menstruation, have we ceded control to companies?

Schoolgirls using iPads during a lesson at a comprehensive secondary school
‘Donating free tampons for ever is a nice idea, but it’s a short-term solution that benefits multinational corporations as much as it helps kids.’ 

Iwoke up this week to the news that we were being urged to buy tampons for a worthy cause again. According to the charity Freedom4Girls, a school in Leeds has reported that girls are missing school because they can’t afford to buy menstrual products. In response, individuals and charities are donating disposable menstrual products, and calling for them to be provided free in all schools.

Donating free tampons for ever is a nice idea, but it’s a short-term solution that benefits multinational corporations as much as it helps kids, if not more so. Austerity and food poverty (including household toiletries poverty, which includes disposable menstrual products) have highlighted a bigger problem that was masked by the relative financial comfort in the UK a decade or so ago. The menstrual taboos were always there, though. It’s time to acknowledge that we need to start working on medium- and long-term solutions, such as improving menstruation education, removing branding from school resources and eradicating the period taboo for ever.

The news from Leeds was greeted with some very privileged “surely this can’t happen here” handwringing. But this isn’t even a recent development in the UK – it’s just the first time mainstream media has covered it; for those who research school absence, it’s nothing new.

In a letter published in the British Medical Journal in 2010, Dr Daniel Hindley noted that in a Bolton NHS foundation trust study, “menstruation problems” was listed as the fifth most common school absence reason among 251 primary and secondary pupils referred to the trust. He concluded: “It is essential that preventive and early intervention should be seen as the cornerstone of multi-agency working to ensure pupils’ right to education and to protect their health and wellbeing.”

But that didn’t happen seven years ago, and it’s not happening now. If these interventions and recommendations had been followed up, we wouldn’t have kids deciding to truant rather than feel they had the knowledge to manage menstruation themselves or the confidence to talk to parents or teachers.

And as a “Lass war” protester, I need to be clear that this doesn’t just happen in the north of England. And it doesn’t just happen just in the global south. Please don’t come back to me in five years’ time with a news story about someone in the home counties skipping school because of periods. That’s certainly already happening.

If we can’t throw tampons at the problem for ever, what do we do instead? Now that it looks like sex and relationships education is finally going to be made compulsory, we actually have the opportunity to change things and make them stick.

We need to stop leaving lesson plans to companies that are in any way linked to the menstrual product industry. There are market research and projection reports up to 2020 telling the industry that they need to solicit schools to gain young, brand-loyal customers, and that advice hasn’t changed in a century.

Schools need to deal with this better themselves. They’re schools. What are they playing at? No other school subject relies on free samples or branded teaching resources. We need to keep brands away from national curriculum planning for menstruation education, and include experts.

So, policymakers: don’t tell schools to give out free disposables without teaching about reusables in equal measure and legislate against branded resources.

Schools: provide different brands of disposable pads and tampons in the toilets – especially during exams. Ensure school toilets are unlocked and accessible all day long, not just at break times, and that they’re clean and have hot water, soap, dryers and bins. Teach about puberty before it starts, and don’t single out early menstruators. Remove all outer packaging and complain to any companies that send you branded resources, or better still use unbranded, factually accurate, menstruation education resources, and vet everything with an expert on menstruation for quality.

And finally, since the girls from Leeds were confident enough to share their concerns, it’s most appropriate to direct some advice straight to them: if a company sells menstrual products, profit is always going to be their first priority, no matter how they dress it up, and the designs they use on the lesson plans or web content will look just like the product packaging. Don’t let yourself be bought and sold.

Don’t let teachers skip an important part of your education just because someone skipped it for them. Demand better, because you deserve better. Don’t be afraid to keep talking about it. And don’t accept a bunch of free tampons as the best solution for menstrual management – or austerity. There are more options out there, and you have a choice.

Demand to know about reusable menstrual products. You don’t have to spend all your money buying expensive disposables if you don’t want to or can’t. You can use menstrual cups or cloth pads too, or instead – they’re good for the environment and your wallet.

Oh, and take it from someone who got teased for leaking on their period at a slumber party while trapped in a blizzard at the age of 13: leaks are not the worst thing in the world. Stick together. I’m proud and impressed that you’re talking about this. And everyone else? Buying tampons for people only lasts for a certain period. It doesn’t address the taboos or end poverty – it feeds right into the rampant capitalism and disposable culture that got us here in the first place.


Referral management schemes: good for whom?

Schemes to manage demand for hospital appointments are booming, a BMJ investigation has found. But few are being evaluated, reports Gareth Iacobucci

Clinical commissioning groups (CCGs) in England are spending millions of pounds on schemes that sift through referrals from GPs to specialist services, some claiming that they reduce costs, while others hope to improve the quality of referrals. But an investigation by The BMJ has found that only a small fraction of schemes are being fully evaluated, leading to questions about their purpose and the effects they are having on patients and doctors.

The BMJ sent freedom of information requests to all 211 CCGs in England, asking for details of any referral management schemes they had in operation. Of the 184 CCGs that responded, 72 (39%) said that they currently commissioned some form of referral management scheme as part of efforts to manage outpatient activity in local hospitals.

A fifth of responding CCGs (36) have commissioned a new referral management scheme since CCGs formed in April 2013. The same number have continued to commission schemes that were previously set up by primary care trusts, the organisations that were superseded by CCGs.

Of the 93 schemes identified, 30 are run by private companies, 27 are run in-house by CCGs, 10 are operated by NHS commissioning support units, 10 are run by NHS trusts, nine are run by not-for-profit organisations, and seven are operated by local GPs or other clinicians.

Just under half (42) of the 93 schemes have been introduced by CCGs since 2013, with the remaining 51 carried over from previous schemes run by primary care trusts.

Have the schemes saved money?

The BMJ also requested information on how much each scheme had cost since it was implemented and how much it had saved. Only 10 of 72 CCGs with schemes in place (14%) were able to provide figures showing that their referral management schemes had saved more money than they had cost. Nine CCGs (12%) supplied figures showing that their schemes had not saved money overall.

Almost three quarters of CCGs with a scheme (74%, 53 groups) failed to provide figures to show whether or not they had saved money overall. Some said that they did not collect data on savings, some said that their referral scheme was designed not to save money but to improve the quality of referrals, and others refused to disclose details of savings, on the grounds of commercial confidentiality.

Fifty of the 72 CCGs with a scheme in place (69%) disclosed the cost of operation. These CCGs combined have spent at least £57m (€67m; $70m) on referral management systems since April 2013.

The schemes vary in terms of their scope and results, with some focusing on single specialty areas and others screening referrals across a wide range of clinical areas (box 1).

Box 1: Examples of referral management schemes in England

  • Wolverhampton CCG—Run since 2014 by the Royal Wolverhampton NHS Trust, this scheme enables consultants to clinically triage all patients referred to the gastroenterology service and direct them to the most appropriate course of treatment. It has delivered a 27% reduction in new outpatient attendances in its first eight months.

  • Ealing CCG—The company Optum was commissioned to scrutinise all referrals to eight specialty areas (cardiology, dermatology, ear, nose, and throat, gastroenterology, gynaecology, paediatrics, urology and renal, and trauma and orthopaedics). Optum was paid £847 000 to operate the contract in 2015-16, when it delivered estimated savings of £973 000. The contract, which began in March 2015, is worth £4.6m over five years.1

  • Brighton and Hove CCG—Optum has been contracted since 2015 to monitor referrals to most clinical specialties. The CCG said that around 7% of referrals are returned to practices either for clinical reasons, such as inappropriate services, or because of lack of detail on the referral form. The CCG refused to disclose the value of the contract on the grounds of commercial sensitivity, but it said that the service did not bring any cost savings and that its primary purpose was “to direct referrals as clinically appropriate or according to patient choice.”

  • Bedfordshire CCG—Has commissioned two referral management “hubs” run by private companies since 2014:

    • Dermatology service provided by Optum—The company says that this hub has reduced elective activity by more than 65% and reduced patients’ waiting times.2

    • Musculoskeletal service provided by Circle Health—Musculoskeletal referrals to the local hospital trust fell by 30% in the first six months of Circle taking over the service.3

  • Rushcliffe CCG—The CCG commissions Circle Health to run two separate referral hubs that have led to substantial reductions in referrals. The first, a three year deal to screen referrals to community trauma and orthopaedics, cut referrals by 14.6% in its first six months of operation, April to September 2016. The second, a teledermatology service that began operating in October 2015, reduced referrals by 33.6% in the six months to July 2016.

  • Nottingham West CCG—Introduced two separate schemes in 2015-16, covering ophthalmology and orthopaedics. Referral rates are still increasing in these areas (by 3% and 1.6%, respectively), but these rises are smaller than the overall 9% increase in outpatient attendances across all specialties in the same period.

Evidence lacking

Richard Vautrey, deputy chair of the BMA’s General Practitioners Committee, said he was concerned that CCGs under financial pressure were increasingly commissioning new schemes without sufficient evidence or evaluation. He said that the lack of evidence provided to The BMJ on savings was a particularly worrying finding and called for much more “openness and transparency” from CCGs.

He said, “As public bodies, there should be an expectation on every CCG to account for what it’s doing. If they are spending large amounts of money on a particular scheme they need to be able to demonstrate that it’s delivering both value for money and a quality service which patients and local practitioners recognise and are supportive of.”

Vautrey questioned what value the schemes offered GPs and was concerned that they might negatively affect GPs’ relationships with consultants. “We should really question whether schemes that are bringing in external companies who haven’t really got a full understanding of the local context, and place a barrier between GPs and their colleagues in the nearby hospital, are adding value or just creating more problems in an already fragmented system,” he said.

Graham Jackson, co-chair of NHS Clinical Commissioners, the membership organisation that represents CCGs, said that referral management was just one mechanism used for managing demand and provided benefits in terms of peer review and education.

But Candace Imison, director of policy at the health think tank the Nuffield Trust and who previously worked at the King’s Fund, where she coauthored a 2010 paper finding that many referral management schemes failed to improve quality and save money,4 expressed concern at the lack of monitoring of cost effectiveness of the schemes. She said, “Outpatient activity is currently the big driver of growth in hospital demand, so it is really important that CCGs have a handle on that. It is worrying if they have off-shored this activity and haven’t really got a handle on it.

“Sadly, I think that with so many commissioner led schemes the cost effectiveness is not properly thought through. If you are investing money in this you should absolutely be assessing whether it is actually driving value.”

Imison also warned that externally run schemes carried clinical governance risks. “You are creating this extra layer in the journey, and that does carry risks with it. I’m not always sure that [commissioners] really look at those risks in a way that they should.”

Box 2: History of referral management schemes in England

  • Schemes were first introduced by primary care trusts in 2005 after the Department of Health under Tony Blair’s government said that referral management should be “a key lever” for managing demand in the acute care sector.

  • By 2007 an estimated 79% of primary care trusts had introduced or were about to introduce new referral management systems.

  • Some schemes were later decommissioned after evidence showed that many schemes failed to improve quality and deliver cost savings.

  • But four in 10 CCGs (which replaced primary care trusts in 2013) currently have a scheme in place. This is split roughly 50:50 between new schemes commissioned since 2013 and old PCT schemes that have been continued.

David Oliver: Improving access to intermediate care 

NHS Benchmarking’s national audit of intermediate care is in its fourth year. The 2015 round described over 340 services from 95 providers in England and 53 clinical commissioning groups.1 In the context of current system challenges it provides crucial data, especially on older people’s services. The median age of patients described is 82.

What do we mean by intermediate care models? The Department of Health’s Halfway Home report said in 2009, “Intermediate care is a range of integrated services to promote faster recovery from illness, prevent unnecessary acute hospital admission and premature admission to long-term residential care, support more timely discharge from hospital and maximise independent living.”2

Intermediate care seems to work for most who receive it. Over 90% of 12 000 patients described in the audit maintained or improved functional independence. Four in five returned home. Around half said that it had improved their ability to maintain social contact. Self reported experience showed that most patients liked and valued the service.

And intermediate care seems to be fairly low cost next to tariffs for acute hospital beds or weekly care home payments. For median stays of 29 days, home based care averaged £1215 (€1440; $1500) per service user in 2015, compared with £5672 for bed based services.

The 2014 audit had estimated that we have only around half the intermediate care places we need in England.3 Yet commissioner spending by weighted 100 000 population has not increased since 2013 despite an ageing demographic and rising unmet demand.1 4 Time from referral to acceptance has increased. Six days is now the average in home based intermediate care, eight days the average in social care led home “reablement.” Potential benefits are negated by delays in accessing services. The implications are stark, for care systems and for service users.

Commissioner spending on intermediate care has not increased since 2013 despite an ageing demographic and rising unmet demand

Delayed transfers of medically stable but stranded patients from hospitals have hit a record high.5 Repeatedly cut social care accounts for the steepest rise,6 but most delays are still among patients awaiting community healthcare.7 A lack of effective post-acute rehabilitation is likely to increase dependence and knock-on demand for social care.

The 44 sustainability and transformation plans around England generally make big assumptions about possible shifts of older people’s care out of hospital and epic reductions in hospital beds and activity. Some propose reductions in community hospitals.8 9

Such schemes often rely on assumptions from bed audit exercises claiming to show that many people in acute hospital beds could hypothetically be supported elsewhere. But a recent NHS Providers’ survey suggested that capacity is inadequate and falling.10

The 2016 Intermediate Care audit is now under way.11 I urge readers to look out for the results and to sense check local reconfiguration plans against them.

End of life care requires ‘widescale improvements’, report says

Royal College of Physicians investigation shows palliative care differs across hospitals with few trusts offering adequate training
NHS end of life care
The report highlights the continued lack of specialist palliative care at weekends, ten years on from recommendations that it be offered seven days a week. 

Fewer than half of NHS patients who were in their last hours or days were told that they were dying by hospital staff, according to a critical report from the Royal College of Physicians (RCP), while a significant number of families and relatives are left feeling they have no emotional support.

The report also highlights the continued lack of specialist palliative care at weekends, 10 years on from Nice recommendations that it should be offered seven days a week.

Complaints by families that dying relatives were not given fluids were one of the chief spurs to an investigation and later withdrawal of the Liverpool Care Pathway – a protocol intended to help people to die well. The RCP audit, which included some who were on the Pathway and others who were not, found that 59% of patients were assessed to see whether they needed fluids through a drip – but conversations about thirst were held with only 17% of patients and 36% of relatives and friends.

The report, which investigated 6,580 deaths in 149 hospitals during May last year, concludes that wide-scale improvements are needed to ensure that care and support for the dying is consistently good.

Half of those dying spend their last days in a hospital, but the RCP’s inquiry suggests some hospitals are a far better place in which to die than others.

“The fundamental problem is about whether this is a national priority and whether this is an NHS priority,” said Dr Kevin Stewart, chair of the RCP’s audit steering group. “We don’t think this area has been given enough prominence.”

According to the findings, doctors and nurses had recognised that most of the patients (87%) were in the last days of their life, but talked about it with less than half (48%) of those who were considered capable of having the discussion. In 93% of cases, however, they told relatives, on average 31 hours before the death.

Most patients were prescribed medication when they needed it for the five key symptoms experienced at the end of life – pain, agitation, noisy breathing, difficulty breathing and nausea and vomiting. Not all needed the drugs, but in the final 24 hours 44% were given pain relief and 17% medication to help with shortness of breath.

Three-quarters of the 858 bereaved family members questioned felt they were involved in decisions about the care and treatment of their dying relative – but a quarter did not and 37% thought the emotional support given to them by the healthcare team was only fair or poor.

The report also found there was very little training for hospital staff in the care of the dying, in spite of national recommendations -– it was mandatory for doctors in only 19% of Trusts and for nurses in 28%. Almost half (47%) of Trusts did not have a named board member with responsibility for care of the dying.

“A core job of any hospital is to care for the dying, yet this audit shows this care is still not being prioritised,” said Dr David Brooks, president of the Association for Palliative Medicine (APM).

“Ten years on from Nice recommending that specialist medical and nursing services should be available seven days a week in palliative care, only a fifth of hospitals are in a position to provide this level of care.”

In the light of the Francis Inquiry and the “More Care Less Pathway” report by Lady Julia Neuberger into the Liverpool Care Pathway, “we find this very troubling”, said Brooks.

“Although we all face dying at some point, there isn’t adequate training and access to specialist support in the majority of hospitals to ensure all dying patients receive the care they deserve whenever they need it,” he added.

“It should be a basic entitlement for a dying person to have high quality, compassionate end of life care. This requires those caring for them to have adequate basic training and access to specialist support when needed, irrespective of where they are in the country.”

Dr Stewart said that although some aspects of care are good in hospitals in England, “I am deeply concerned that some hospitals are falling short of the excellent care that should be provided to both dying people and those important to them. In particular, communication with patients and their families is generally poor. It is disappointing that hospitals don’t seem to recognise this as an important issue, not just for those experiencing this in their own lives, but for the wider public.

“Everyone wants to know that if they are in the same situation, their needs and those of their families, friends and those important to them will be met, with clinically appropriate treatment, sensitivity and compassion.”

Professor John Ellershaw, director of the Marie Curie Palliative Care Institute in Liverpool, said: “It is unacceptable in the current day and age that hospitals are failing patients, and their families, in the care they receive at the end of their life. Too many patients are dying badly in our hospitals when we know how to care for them well.”

Richard Berman, a consultant in palliative care medicine at the Christie Hospital in Manchester, knows his patients are going to die. They have terminal cancer. But when they are in their last days of life, he will tell them only as much as they want.

“It’s not something that you have to let everybody know. The better way of putting it is that the patient should be given the opportunity to learn about what is happening to them,” he said.

He – or someone else on the palliative care team – will ask a broad question in as sesnsitive way as possible, such as “How do you think things are going?”. The patient might respond, “I’m not sure they are going very well”, which gives the doctor the chance to ask, “Would you like me to explain more about what’s going on?”.

It’s a step by step process, said Berman. “There’s never the bombshell question that they are not expecting,” he said. “Not every patient wants to hear more – in which case, the conversation stops there.

It’s difficult to have hard and fast rules about how you do this,” said Berman. “Everyone is different and has a different personality and different culture and background. There should be a very flexible approach.”

Even some people who do want open and frank discussions can get upset, “but the majority know anyway that things weren’t going so well and just want confirmation of that”.

“Sometimes patients are poorly or may become poorly quickly and you may miss the opportunity to have these discussions.” Conversations with family and friends and support for them are also critical. “This is a very sensitive, distressing and difficult time for them. They need to be kept involved in discussions and up to date with what is going on,” he said. At the Christie, they really get few complaints, but “emotions run high. If relatives are distressed and angry and upset, the way forward is to sit them down and explore why. Often it is something that is fairly easily resolvable. It is all about sensitive and open communictaion.”

Decision to deny surgery to obese patients is like ‘racial discrimination’

Bariatric surgeon Shaw Somers said move by local NHS in Vale of York amounts to discrimination because obesity is an illness

An overweight man sitting on the edge of a wall.
Anyone classified as obese – with a BMI of over 30 – will have to wait a year for surgery in the Vale of York.
The decision by an NHS body to restrict obese patients’ access to elective surgery until they lose weight is comparable with racial or religious discrimination, a surgeon has said.

The Vale of York clinical commissioning group (CCG) will make people wait for up to a year for treatment for non-life-threatening conditions such as hip and knee replacements if their body mass index is 30 or higher.

The group said it had taken the decision because it was the “best way of achieving maximum value from the limited resources available”.

Shaw Somers, a bariatric surgeon from Portsmouth, said the move was a logical step and could save money, but amounted to discrimination because obesity was an illness.

“They [the patients] are trying to lose weight in the vast majority of cases and to deny them treatment that they need on the basis of their weight, without then offering them effective help to help them lose weight is rather like discriminating [against] a segment of the population on the basis of their colour or religious persuasion,” he told BBC Radio 4’s Today programme.

“Just saying you can’t have surgery and there is no access to alternative treatments really doesn’t help anyone.”

Chris Hopson, the head of NHS Providers – which represents acute care, ambulance and community services – said the move amounted to “rationing care to save money”.

He told Today that the health service was being asked to deliver too much for the funding available. Rather than commissioning groups making “piecemeal decisions”, Hopson said there should be a national debate about the future of the UK’s healthcare system involving not only politicians, NHS leaders and clinicians – but the public as well, given that tax revenues funded it.

Demand for healthcare was “about to go through the roof” as baby boomers neared the end of their lives, he said. There had been a 6% increase in emergency admissions in the first quarter of this year.

The Royal College of Surgeons (RCS) said that it was a dangerous move that ranked among the “most severe the modern NHS has ever seen”.

She added: “As the true scale of financial pressure on NHS trusts has become clear over the summer, we are fast finding ourselves in a situation where CCGs are introducing draconian commissioning policies, often flouting Nice [National Institute for Health and Care Excellence] or other clinical guidance, in order to balance the books.

A spokesman for NHS England said: “Major surgery poses much higher risks for severely overweight patients who smoke. So local GP-led clinicalcommissioning groups are entirely right to ensure these patients first get support to lose weight and try and stop smoking before their hip or knee operation. Reducing obesity and cutting smoking not only benefits patients but saves the NHS and taxpayers millions of pounds.

“This does not and cannot mean blanket bans on particular patients such as smokers getting operations, which would be inconsistent with the NHS constitution.

“Vale of York CCG is currently under special measures legal direction, and NHS England is today asking it to review its proposed approach before it takes effect to ensure it is proportionate, clinically reasonable, and consistent with applicable national clinical guidelines.”