Category Archives: Quality of care

Imagine the scenario. A 60 year old lady (she could be a relative of yours) undergoes a routine angioplasty for stable single vessel coronary disease. Unfortunately, shortly following the deployment of the stent into her 90% stenosis of her right coronary a dissection occurs, she suffers an acute myocardial infarction, and dies. She had signed a consent form prior to the procedure indicating that there was a 1% risk of heart attack, stroke or death but she had not been told that having a stent would not prevent a heart attack or prolong her life.  She had previously told her son that she didn’t want to have a heart attack implying that’s why she agreed to the have it done in the first place. Should the Cardiologist, who knew that the procedure would not provide any benefit for what mattered most the patient, and neglected to tell her, be prosecuted? Consent that is not fully informed is not consent at all. But rather than the exception such sequestering of patient important information is very much the norm.

One study revealed that 88% of patients believed they were having the procedure done for the very purpose of preventing a heart attack and 43% of cardiologists when anonymously asked said they would still go ahead and do the procedure even if they knew it would not benefit the patient. Monetary factors, enjoyment of performing the procedure and pressure to keep up numbers of cases for individual cardiologists and hospitals all contribute to overuse. But this is not in keeping with the practice of Evidence Based Medicine which is defined by the integration of individual clinical expertise, best available evidence and most importantly patient preferences and values.

When patient’s were explicitly told lack of prognostic benefit from angioplasty only 45.7% opted for the procedure versus 69.4% who were not explicitly given this information. It is estimated that such information given to patients with subsequent reduction in procedures could save US healthcare $864 million a year.

The Academy of Medical Royal Colleges state that doctors have an ethical responsibility to reduce waste because In a system with finite resources one doctors waste is another patients delay. In the UK approximately a third of coronary angioplasties, 30,000 a year are carried out for stable disease. For many this may be to alleviate symptoms which have not settled with medical therapy but studies suggest this benefit disappears after a year and the recent ORBITA trial suggests stenting offers no improvement in exercise capacity in patients with single vessel disease.

But “too much angioplasty” is just one symptom of a system failure where financial incentives trump patients at every level.

In the US it’s estimated that 20-50% of over $3 trillion dollars spent is inappropriate, wasting resources and/or harming patients.  In the UK Sir Bruce Keogh has suggested 1 in 7 of all medical and surgical treatments in the NHS should not have been carried out on patients.  The Academy of Medical Royal Colleges calculated that at least £2 billion is being wasted on treatments that have clear evidence of no benefit.  But this is likely a gross underestimate of billions more that could be saved/money that could be made better use of if patient preferences and values are taken into consideration.

A pioneering independent free website theNNT.com evaluates evidence based medicine with quick easy to read summaries according to patient important outcomes. It recently published a review that there was no mortality benefit in taking statins for those with a less than 20% risk of developing cardiovascular disease in the next ten years. This risk profile represents the majority of at least 40 million taking statins worldwide but how many of them are aware of this? My own anecdotal twitter survey of 144 respondents revealed 92% would not take a statin on this information. Greater transparency when communicating true benefits and harms of any treatment is an easy win to rapidly improve value in the NHS whilst simultaneously empowering patients with more choice.

Improving the system will also require commissioners to financially reward doctors for carrying out a simple shared decision-making conversation with patients, not on the volume of operations or prescription of more medication which is ethically dubious at best. Every patient should also be empowered by asking the following questions as per the Academy of Medical Royal Colleges Choosing wisely campaign. Do I really need this test, medication or procedure? What are the risks? Are there simpler safer options? What happens if I do nothing?

The system is broken and can be rapidly fixed not by pouring in more money but by adhering to the principles of practising evidence based medicine where patient preferences truly matter.

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Liverpool activist Greg Dropkin has weighed the claims of the RightCare initiative, and found them wanting.  (RightCare: wrong answers Journal of Public Health November 2017). RightCare is an NHS England programme that identifies opportunities for savings and quality improvements and describes itself as ‘a proven approach that delivers better patient outcomes’.

Greg Dropkin’s challenges the modelling assumptions made by RightCare (which have a flavour of a corporate consultancy about them), and the misinterpretation of dissimilar outcomes as opportunities for improvement. The difficulties of measuring unwarranted variation are well documented by Appleby and others in a 2011 Kings Fund report (Variations in health care: the good, the bad and the inexplicable). Unwarranted variation is a slippery notion, even though it appears to be endemic in clinical practice.

The RightCare approach has advantages for the NHS, giving NHS England, the DoH and the Treasury the results they want – the appearance of better quality care with the impression of lower costs. It contributes to the current magical thinking about NHS finances. Sadly, Dropkin’s argument is unlikely to dent this magical thinking much, the NHS being a centralised hierarchy within which conformity is highly valued.

Worse, from our point of view, is that faulty RightCare judgements may result in misallocation of resources through the allied CROC (Co-ordinated Reallocation Of Capacity) programme. For example, if the solution to unwarranted variation in cancer outcomes seems to be proton beam therapy, the NHS will have to invest in plant and machinery, or buy treatment time in the small but growing network of commercial proton beam treatment centres.

However, if RightCare did not exist we would have to invent it. It attempts to address variations in the five tractable conditions that drive secondary care use (heart disease, hypertension, COPD, CKD and atrial fibrillation), and it is interested in under-use as well as over-use of services. Given that pathway standardisations introduced by QOF seem to have only limited impact on clinical outcomes or service use, this makes sense.

An example is RightCare’s Falls and Fragility Fractures Pathway, which defines the core components of an optimal service for people who have suffered a fall or are at risk of falls and fragility fractures. The NHS claims to be working on this, but other priorities have overshadowed falls and fractures, despite their huge cost. The Royal College of Physicians 2010 report Falling Standards, Broken Promises, documents the neglect of this problem. RightCare is right to pick up the problem, and its proposals for a pathway are appropriate and overdue.

The 2011 King’s Fund report recommended changing the focus of initiatives against unwarranted variation from achieving outcomes to fixing care processes (especially shared decision making). This favours pathways, which may be picked up by the Get It Right First Time initiative (GIRFT) as much as by RightCare. (Digression: Why does the NHS have two organisations trying to tackle unwarranted variation? Because they have both evolved from different NHS fiefdoms!)

Shared decision-making is a noble enough idea, but in the NHS’s current toxic climate it too can be warped. ‘Choosing Wisely’ is a programme that aims to discourage doctors from using interventions that are not supported by evidence, free from harm and truly necessary. (Malhotra A et al Choosing Wisely in the UK  BMJ 2015;350:h2308). The NHS in North West London recently asked the public their views on Choosing Wisely, a scheme which it said was “to help reduce waste”. Its proposals for consideration were: encouraging patients to buy medicines over-the-counter when they could; GPs to avoid prescribing medicines that could be purchased; and patients to collect their own repeat prescriptions rather than let pharmacies collect them. What begins as an attempt to improve the quality of care ends as a means to transfer costs to the user.

An incoming Labour administration should change RightCare without abandoning it. Duplication of effort is usually unhelpful, so RightCare and GIRFT should be merged. The emphasis on outcomes and the optimistic claims of savings could both go, to be replaced by evidence-based pathways that regulators could audit and evaluate. And campaigners could harry those in NHS middle management who try to sneak in service reductions or co-payments as part of a quality improvement drive.

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Yet another important figure in the health world adds to the concerns expressed by many others about the serious  situation facing NHS England this coming winter. Niall Dickson, chief executive of the NHS Confederation, which represents all health service organisations, said that there was “an even greater sense of foreboding” this year than last.

His comments came as figures revealed that the number of the most critically ill patients waiting more than an hour for an ambulance has doubled in a year.

Mr Dickson writes “A cash injection at this stage is unlikely to solve the winter pressures, but the chancellor must revisit the pencilled in figures for 2018-19 and 2019-20, which if left as they are, would guarantee more crises and further delays to the reforms that are needed. Mr Dickson added “there has also not been enough investment in community health and social care services”!.

Many health professionals are now facing dire problems resulting from insufficient funding and the government must be held accountable for the inevitable consequences.

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The BBC has revealed that seven NHS trusts missed their cancer, A&E and operations targets; with only two trusts in London meeting their latest A&E target (to see 95% of patients within 4 hours).

This is consistent with NHS data showing that in February 2017 almost all hospital A&E departments (excluding specialist and GP led urgent care centres) failed to see 95% of patients within four hours. Epsom and St Helier University Hospitals NHS Trust was the only London Trust to hit the target that month.

If you want to read more about these figures, you can find them here.

I am very concerned that this is no longer a winter crisis but a perennial crisis; a crisis of the government’s making. Health Secretary Jeremy Hunt’s uncompromising squeeze on Trusts’ finances is leaving London’s health services over-burdened and struggling to provide the best patient care. The strain is taking its toll, with low morale setting in across the workforce.

The government must recognise the need to meet increasing pressures by increasing funding. Expecting Trusts to carry on as they are with no additional resource is neither fair to patients, nor realistic.

This is not complicated; for NHS trusts to hit the government’s targets, they must be properly resourced to do so. And the Government, by failing to do this, is letting every single one of us who relies on the NHS down.

Meanwhile, in City Hall, the Mayor of London is currently consulting on his statutory Health Inequalities Strategy. We know that there is huge variation in health standards across London, and we will be pressing him to look at these figures closely, to ensure all Londoners have access to excellent quality care.

While what we and the Mayor can do in our capacity here at City Hall remains limited; and responsibility for resources and supporting the NHS still falls on the shoulders of the government, we are able to impact a vast array of areas which impact Londoners’ health.

You can contribute to the Mayor’s strategy consultation as either an organisation or an individual here, and I would encourage as many of you as possible to do so.

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Landmark study exposes NHS privatisation risks

Outsourcing of hospital support services (like cleaning, catering, and laundry) is extremely contentious. Private corporations undercut traditional in-house operations, making profits by driving down wages and conditions of service. This is obviously attractive to cash-strapped hospitals.

But does it matter for patients?

Does cheaper mean worse, or can the private sector square the circle by providing better service for less? So far, the authorities in Scotland, Wales and Northern Ireland have been unconvinced. They have insisted that the existing in-house services be retained, ensuring that cleaners are part of the ward team, with a shared commitment to patient care, rather than casual, low paid, and often transient extras. In marked contrast, the NHS in England believes that outsourced services can provide value for money.

So far, the jury has been out. Now, we have solid evidence that should make the NHS in England reassess its position.

Back in 1983, cleaning services were among the first parts of NHS to be outsourced to private contractors. The Conservative Manifesto that year justified the outsourcing, saying it would “make the maximum possible savings by putting services like laundry, catering and hospital cleaning out to competitive tender. We are tightening up, too, on management costs, and getting much firmer control of staff numbers”.

It soon became clear that there were problems. There were numerous reports that contractors seeking to save money, for example by employing fewer staff, with poorer working conditions and hence motivation, were achieving lower levels of cleanliness than the in-house NHS staff they replaced. Yet these fears among frontline workers who could see what was happening were dismissed. The Business Services Association, a lobby group representing outsourcing companies, claimed to widespread incredulity that “There is no evidence to suggest that outsourcing cleaning services causes increased rates of infection” ).

So what does the evidence show?

Do NHS Trusts employing private cleaning services experienced more cases of MRSA, a ‘superbug’ that can cause life-threatening infection which has been previously linked to poor cleanliness? We brought together a number of data sources that, surprisingly, had not previously been combined to ask the question. We had data on 126 NHS trusts during the period 2010-2014.

We found clear evidence that Trusts which outsourced their cleaning services reported significantly more MRSA cases. Yet that was not all. Fewer patients in these hospitals reported that levels of cleanliness were excellent and staff reported fewer handwashing stations.

The one way in which outsourcing achieved its intended goal was cost. Cleaning in these hospitals was about £236 less per bed each year. Of course, that does not account for the excess human and economic costs of infections, and we were only able to measure one type, those due to MRSA. It would be surprising if what we found was limited to one type of bacteria.

Why are these findings important? Privatisation of NHS services is now high on the political agenda, as the impact of cuts to health and social care bite. Outsourcing corporations are eyeing the opportunities and the current government in Westminster is sympathetic to their wishes. Their sympathymight be influenced by prospects of following their predecessors to work for these corporations.

Former Prime Minister David Cameron argued for outsourcing in 2011.“It shouldn’t matter if providers are from the state, private or voluntary sector as long as they offer a great service” and “It’s about ending the old big government, top-down way of running public services and bringing in a Big Society approach; releasing the grip of state control and putting power in people’s hands,” Cameron wrote in the Open Public Services White Paper.

Unfortunately, we have shown that, as far as cleaning services are concerned, it does matter who does it. When the money is tight, as it is in the NHS, it can be very attractive to seek the cheapest option in the short term, even if this is at a cost to patients and, ultimately, to the NHS. When these full costs are taken into account, contracting out may prove to be a false economy.

Notes:

The paper, Outsourcing cleaning services increases MRSA incidence: Evidence from 126 English Acute Trusts, by MARTIN MCKEE, VERONICA TOFFOLUTTI, AARON REEVES, and DAVID STUCKLER is to be published in the journal, Social Science and Medicine. It can be viewed here.

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  We’d All Be Dead

Another Secretary of State pushes determinedly, blindly on with NHS reforms, deluded in the notion that they alone can solve the great mystery of health.

NHS waggon with wheels falling off

My message is: no matter how well intentioned, your policy making is doomed to fail, as others have failed before you. May I humbly suggest another solution?

The NHS is now into its 30th year of perpetual reform (perhaps we should hold an anniversary party?). Yet it is still in need of reform. At what point do the politicians wake up and conclude that, in the way they go about it, it is irreformable?

Our ‘heroes’ in government – it happens to be Conservative but could have been Coalition, New Labour, or Jeremy Corbyn – drive determinedly on with their reforms, confident they will succeed this time because it fits with their ideology, or it washes whiter, or it comes gift-wrapped from a captive think tank, or because ‘we are better than our predecessors’.

The New Scientist examined the neuroscience of these sort of political beliefs:
“All told, the uncomfortable conclusion is that some if not all of our fundamental beliefs about the world are based not on facts and reason – or even misinformation – but on gut feelings that arise from our evolved psychology, basic biology and culture. The results of this are plain to see: political deadlock, religious strife, evidence-free policy-making and a bottomless pit of mumbo jumbo.”

Political decision-making is fallible. Politicians can come up with any policy they like because the system allows them to. The only effective check on flawed policy is the House of Lords. But this only applies to legislation, and then is rarely used and can be circumvented. Public pressure may tell occasionally – from a media campaign to a riot. Equally occasionally, an independent rigorous report may emerge years after a policy’s initiation concluding on its ineffectiveness, and it is changed.

But the vast majority of decisions are either taken in private without recourse or are whipped through by the majority party.

And what will it cost – everyone not just the exchequer, including travel to receding A & E departments?

The NHS is one of Labour’s great post-war achievements – a massive improvement and, for a time, the envy of the unprejudiced world. Now Labour is unable to countenance the prospect of a new NHS, no matter how tired or lame the old model is.

The Conservatives have too often wanted to remove this large lump of the state. Consequently they are not trusted with a change of model. Indeed Prime Minister Margaret Thatcher had to reassure Britons in 1982 with the promise that the NHS is “safe in our hands.” But true Conservatives would be much happier if the NHS disappeared altogether: it has been a success deeply embarrassing to their beliefs. With the consequence that Labour defends this ailing institution even more fervently.

The two big parties lock horns over its reform but never join hands to consider its successor. So we are stuck with an institution that will never catch up with better functioning models despite how hard anyone tries.

The electoral system pits these jaded heavyweights against each other – neither having come to terms with the modern world – and they wrestle: pulling the NHS this way and that, removing bits, gluing some back on, replacing parts with prosthetics – or contractors as they are termed, using starvation as an appetite-suppressant, smothering it with procedures and managers, and of course, dipping into those sometime quack cure-alls of marketisation and privatization.

Trapped by their history, the parties are stuck in their ideological backwaters, unable to look to best practice overseas or to reconceive a health service for the 21st century.

The NHS is now experiencing exactly the same underfunding that occurred in the 90s as Thatcher’s world concluded. Gordon Brown arrived and restored the funding to functioning levels….. but went too far, such that by the end of his term money was pouring in only to be appropriated by top management for, um, eh, top management. Excess austerity became the new normal once more and the patient is skinned again.

In a two party state without the stabilising influence of other parties always in the canoe of state, each party in power makes the mistake of assuming that their beliefs will endure for the foreseeable future.

In reality, these are practiced for a limited period, only to be declared false gods by their successors. Small state, big state. Hard on welfare, soft on welfare. Private sector good, public sector bad. Public expenditure good, public expenditure bad.

As citizens and consumers we benefit or suffer from the cumulative output of these regimes, the aggregate, not the separate parts. The moving average of successive governments’ results comes at a high cost in wasted taxes and blighted lives. First past the post voting in which a single party gets absolute power for five years to force its prejudices on the majority is no way to produce a great health service.

All that time, effort, and money being consumed in argument and ‘reform’ which could have been used on medicine.

Let’s take the previous major round of reforms started in 2012 by the then Health Secretary of State. This attempt received a scathing appraisal summed up in this article:

“Perhaps the pithiest verdict on the reforms came from Dame Julie Moore, head of University Hospitals Birmingham: “They cut it from 118 quangos to 234, and they reduced the levels of bureaucracy above me from three to 24.”

The article’s conclusions are spot on:

“It was, from top to bottom, a case study in how not to reform the public services: develop your plan in secret; devote no attention whatsoever to making a public case for it (or explaining its purpose and rationale); remove any shred of internal logic by accepting a series of compromises that go against the original spirit of the legislation; squander vast amounts of capital pushing the resulting botch job through; and then fire the guy responsible, even though for all his mistakes he may just be the only person who understands the reforms enough to make them work.

The lesson we seem to be taking is that you can’t trust any politician to make any reforms to the NHS whatsoever.”

The fallacy of politics.

To state the blindingly obvious, we all need and want an excellent national health service, but its existing form cannot provide this. Wonky politics has produced a model which no matter how many attempts at tinkering with/battering it into submission won’t produce the required results. The villain here is our system of government. In terms of organisational theory a quarter of a century of making limited progress, despite repetitive and costly restructuring, demonstrates that the problem is the model of organisation, not the internal structure; and that it is time for a new one.

Public services around the world remind me rather of manufacturing industries before the Japanese got involved. They established ‘best practice’ to such an extent that, today, if your manufacturing is not world class you won’t be in business. As companies like Sony and Toyota started to export in the 80s, the rest of the world first felt the competitive squeeze, then cried foul, then explained away their success as the product of a foreign culture. Then the unprejudiced went to look and learn. What I term global ‘learning engines’ became established through management gurus, journals, professional associations, consultants, business schools etc. Most industries now have these means to acquire, disseminate and apply knowledge and best practice.

They exist already in medical practice. The protocol for treating a particular cancer is the same in Rio, Rotherham, and Riyadh.

But best practice acquisition is not practiced in public service organisation. It’s high time it was. Not so far away from our island isolation, are health models worth considering: ones designed for all, and not the high cost lottery of the US. Look at France as an eye opener. In its 2000 assessment of national systems, the World Health Organization found that France provided “close to best overall health care” in the world. Worth a look?

Or, the 2010 OECD report notes:

“Australia, Iceland, Japan, Korea and Switzerland perform best in transforming spending into health outcomes……….. There is no one-size-fits-all approach to reforming health care systems……..Adopt best practices from the many different health care systems that exist and tailor them to suit actual circumstances.”
Ah, good point.

In various ways these are all national health services, just not the NHS as conceived here.

The question then arises as to how we might get from today’s NHS to tomorrow’s, especially given all the past party political machinations and failure, and how distrustful we are of change.

Canada provides a model for considering, deciding on, and introducing such a major change to such a sensitive service. Its programme of extensive public engagement and deliberation on four potential health service models around 2000, involved all manner of accessing people: It started with an independently assembled fact and information base (without a spun statistic in sight, oh how sensible). The facilitator of that programme concluded a consensus emerged as much based on values as on hard data. He reported this to government, which accepted and implemented it.

The Canadian government’s current stated purpose on health is to ‘hear what Canadians are thinking on a particular issue. The input obtained during these consultations helps form policies and legislation that reflect the concerns of Canadians.’ On something as important as health, Canada has been trying to make adversarial politics redundant as a decision making process. Could we, should we, dare to do the same in this country?

We live with the consequences of fallible policy making littered around us. Reforms based on the good ideas or whims of another delusional Secretary of State have not and will not work. Only consensual politics will end the political deadlock on NHS – and this means looking to best practice. Grown up politics rather than ideological zigzag. Now, there’s a thought.

I’ll be applying my knowledge of how government really works in future blogs. Follow me at edstraw.com for more on the detrimental nature of zigzag policies.

First  published on Slugger O’Toole

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Big data is one of the most prominent buzzwords in the technology landscape today. Knowing what and potentially why customers think and act the way they do is a critical component of asuccessful enterprise, regardless of thesize of a company or the niche audience they serve. But data is not only valuable in the business of offering products to the masses – it is a necessary part of service industries as well, including healthcare systems.

Recently, technology-based customer feedback innovator, HappyorNot, conducted a survey of patient satisfaction levels from more than 6 million patients spanning 25 countries. Scores were assigned based on data gathered from the patients directly, representing a percentage of satisfaction for each country. Sweden ranked highest with a 92.37% satisfaction rate, followed by the US at fourth (89.33%) and the UK rounding out the top ten (81.60%).

While it is interesting to see the results of survey responses in this capacity, the power of insightful data in the realm of patient care satisfaction reaches far beyond a single report.

Electronic patient survey

The Role of Patient Experience Surveys

HappyorNot offers a simple, self-contained method to acquire feedback directly from patients – an innovative solution for a fairly complex need within healthcare systems. Through a single, easy to use terminal within the doctor’s office or facility, the company gives patients the opportunity to share feedback on care received. Four smileys ranging from happy to unhappy sit just below an on-screen question posed by the facility. Patients push the corresponding button that best aligns with their experience, and the data is then transmitted to a cloud-based reporting service. In the blink of an eye, healthcare providers have valuable data on how they are performing, for each and every patient.

The data gathered from the survey provided some insight into how patients feel about their care experience, including specific questions focused in the following areas:

  • Practitioner professionalism – did the patient feel as though needs were met during the visit

  • Operational performance – did the patient wait too long to be seen

  • Department-specific performance – was the care provided in a specific department satisfactory

  • Overall satisfaction – did the patient feel that the total experience was positive

Having data on these metrics is a crucial aspect of understanding not only patient experiences but also adherence to overarching healthcare standards. Analyzing data from patient care surveys allows systems and facilities to understand how prevention and treatment processes are working in real-time, as well as work toward higher level clinical outcomes and patient safety. Improving these factors leads to less health care utilization, lessening the financial blow to both patients and providers brought about by low-level care.

Having data on patient experiences within healthcare systems is gaining traction among providers and consumers alike for these reasons. The ability to publicly share information in an effort to assist patientsin making decisions regarding providers and facilities is a necessary step toward the overall improvement of healthcare systems across the board. While the smiley terminals offer a simple solution for gathering patient care data, there is cause to believe that permanent, computerized feedback stations that collect more in-depth data from patients could improve the quality of care to an even greater extent.

Limitations of Current Patient Data Collection Methods

Two main sources of data exist for healthcare system performance: the Care Quality Commission (CQC) and the Health and Social Care Information Centre. First, the CQC, acting as the independent regulator of health and social care in England, requires each healthcare provider to register with the organisation and meet a number of legal requirements prior to providing care. Once registered, services offered by each provider are monitored through the use of data derived from patient survey information, in-house inspections, and national data sources. To help patients make the most informed decisions on provider choice, the CQC publishes periodic reports which offer insight as to how well a provider is performing. Unfortunately, the CQC has a substantial lag between receiving data and making it public, and not all providers are inspected and subsequently rated in a timely manner.

In addition to the CQC, the Health and Social Care Information Centre is a national provider of information, data and IT systems for both health and social care. Each quarter, the organisation gathers data on complaints relating to NHS Hospital and Community Health Services – a clear indication of the quality of patient care within NHS itself. The quarterly report from the Health and Social Care Information Centre is made available to the public with information on the total number of complaints for the period, the number of new complaints, and the number of resolved and unresolved complaints. The purpose of the data is to maintain a level of transparency between patients and providers, but given that not all providers respond or have adequate methods to capture complaints in-house, the information only lends a partial hand in promoting patient care quality.

Looking Ahead

The overall satisfaction of patients is becoming a profoundly necessary measure of the performance of various healthcare systems. The HappyorNot smiley terminals use simple data to develop meaningful insight into the quality of care in a number of healthcare facilities, but more can be done. A representative from the UK-based team of medical solicitors, Patient Claim Line, feels strongly that computerized patient feedback stations like smiley terminals are a step in the right direction; however, an understanding of how the patient data is to be used in affecting quality patient care is a necessary rung in the data ladder.

In order for patients to receive the highest quality care, healthcare systems must not only be willing to listen to concerns but also capable of gathering that data in an accurate, safe way. Further, healthcare systems and the companies that support them have to understand that patient experiences are not a single layer deep. Complaints about treatment, facilities, safety and other critical aspects of care can be highly complex, creating the need for technology able to collect and share advanced data. The combination of big data and healthcare is a promising path for providers and most importantly, the patients who rely on and deserve the highest level of care.

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Don Berwick, a North American fan of the NHS and critic of the wasteful US healthcare system, urges us to create ‘Era 3’ of modern medicine ( Berwick D Era 3 for Medicine & Health Care JAMA 2016;315(13): 1329-1330).

Era 1 was the period of noble, beneficent, self-regulating professionalism that powered the NHS assembled by Labour in 1948. In the compromises needed to launch the new health service, the political class conceded to the professions the authority to judge the quality of their own work.

Era 2 began when the variations in the quality of care; the injustices and indignities inflicted on people because of class, gender and race; the profiteering and the sheer waste of Era 1, became inescapable. Era 2 introduced accountability, scrutiny, measurement, incentives and market mechanisms. As Berwick puts it, “The mechanism of Era 2 is the manipulation of contingencies: rewards, punishments and pay for performance”. Labour contributed to the consolidation of Era 2 during the Blair/Brown governments but the Era’s origin is in the late 1980s with purchaser-provider split, imposition of contracting, the promotion of evidence based medicine and the industrialisation of the NHS.

Era 2 has promoted discomfort, defensiveness, and feelings of anger, of being misunderstood and of being over-controlled. Managers and the Department of Health in turn become suspicious, feel resisted and can become either aggressive (the culture of bullying) or helpless while their political superiors invest more and more in “ravenous inspection and control”.

The conflict between the competing and incompatible drivers of Era 1 and Era 2 diverts attention and resources away from improving and redesigning care. The question for policy makers is how can the conflict be resolved productively, and how can Era 3 be synthesised? What would a modern care system look like?

Berwick has some suggestions, but before considering them we should consider two characteristics of our situation.

Firstly, those most publically defending the NHS are mainly defending Era 1. They want to return to a time before the mechanisms of Era 2 emerged in the NHS. They are deeply conservative in attitude and emotionally are prone to shroud-waving when any change is proposed. Catastrophe is never far away, and conspiracies abound. They are reductionist and tend to have a narrow focus on ‘privatisation’ rather than a broad view of Era 2’s mechanisms. Far from being a solution to the conflict between Era 1 and Era 2, they are part of the problem.

Second, the funding of the NHS is so constrained that its normal functioning cannot be guaranteed. The apparent £22 million budget shortfall in England by 2020 is too big to be corrected by increased productivity, new ways of working, pay restraint and reductions in expenditure on medication. The government’s expectation that squeezing the budget will stimulate higher productivity and creativity in work organisation is not shared by most of those running or working in the NHS.

This is not to say that change is impossible, and some will indeed occur. Nevertheless it seems clear that the financial targets will not be reached. Failure to meet targets is more likely to increase the bullying that is so widespread in the NHS than to reduce it. Continuing reluctance to fund adequately the parts of the care system outside the NHS will just make everything even worse.

Moving from the current underfunded and unstable care system to Era 3 will require solutions around funding and accountability but based on a different approach.

Berwick has nine suggestions for helping Era 3 into being:

  1. Stop excessive measurement
  2. Abandon complex incentives
  3. Decrease the focus on finance (once the quality of care is optimal, costs will fall into place)
  4. Reduce professional prerogative
  5. Recommit to improvement science
  6. Embrace transparency
  7. Protect civility
  8. Really listen (especially to the poor, the disadvantaged and the excluded)
  9. Reject greed (it erodes trust)

How can these ideas work for the NHS? Berwick’s experience is based on US medicine, where the problems are starker than in the UK. But the other side of that coin is that the NHS has many people in it who want to make these kinds of changes. Could Labour come to their aid? How do the suggestions fit with the Labour vision of Whole Person Care?

Berwick’s Era 3 is driven by the escalating costs of US health care and the terrible waste of money in their fragmented and consumerist system. What Berwick wants is a single payer system, but we have that already and our funding problem is shortage not over-expenditure. Increasing the funding of the NHS to allow normal function to be restored will be necessary, but how will Berwick’s other aims be reached?

Stopping excessive measurement and abandoning complex incentives within a light-touch management approach would be welcomed, partly because these changes might foster professional prerogative and favour vested interests by reducing scrutiny and inspection. Would central funding and a better definition of what the care system has to do, combined with decisions by elected local government on how it is to be done, be sufficient to check professional prerogative?

Would our Era 3 system form around a structured response to societal changes like population ageing and rising consumerism? Will it depend on full engagement of citizens if the NHS is to be sustained, as argued by Wanless in 2002?  Can we resist consumerism but favour personalisation? 

Would Era 3 see the end of the primary/secondary care division? Would it see an end to commissioning as we know it? And would the emergence of local care systems (perhaps based on Sustainability and Transformation Plans) streamline care for reasons of outcome not cost?  Would the Treasury be accepting of the realisation that this might slow the growth in NHS costs but not save money, as such?

The Coalition government started by insisting on policy based on patient outcomes, but soon had that idea lobbied out of them. Were they onto something important, like a counter to medicalisation and a force for evidence-based policy?  Perhaps policy cannot be based solely on patient outcomes because we cannot measure the totality of them – but things like the National Service Frameworks which were based on evidence were a good thing, even if that thought re-connects us to Era 2 although admittedly the softer end of the spectrum of Era 2 policy initiatives.

Civility really does need protection. We know that “policies” can be brilliant on paper but do not necessarily get implemented, and that working relationships can be more significant than structures or laws.  How would better relationships be stimulated?

Staff satisfaction correlates with patient satisfaction, so investment in staff well-being and genuine staff engagement really do matter. But probably the majority of Trusts are poor in their treatment of their staff – the junior doctors’ fears about being exploited are well-grounded – and whistleblowing provokes clear threats to the whistler’s career. Care staff are trapped in a system of zero hours contracts and 15 minute visits with little or no training or development. Will more pay and better conditions be enough to raise morale and satisfaction?

Rolling out best practice after proper benchmarking and a detailed independent evaluation (an Era 2 approach) does not appear to work. What will? What should be measured and what local variability is tolerable; who decides?

Inertia is deep-rooted in the functioning of the NHS. The rationalisation of paediatric cardiac surgery urged in 2001 has yet to happen, whilst discharge planning and alternatives to A&E have been worked on for decades yet remain problematic. Recommitting to improvement science sounds like it belongs here, but in practice what will it mean? Should we try to solve the discharge-from-hospital problem by preferentially funding the growth of 24/7 ‘hospital at home’ services rather than traditional hospitals? What happens when evidence throws up the “wrong” and deeply unpopular answer?

Claims have been made about the transparency within the NHS and much data appears to be available, even to private companies. Yet anyone trying to get information out of the NHS (usually through FoI) experiences obstruction – often based on spurious claims of commercial confidentiality – or is simply ignored. Who owns the data? Who kite-marks its value? How are parts of the care system outside the public sector brought into a transparency framework?

Sadly few if any other specialities followed the example of transparency by the cardiac surgeons (after Bristol) and put outcome and mortality data freely into the public domain. What will overcome professional reticence; the Royal Colleges?

As for really listening, the NHS is especially bad at this. Can it really move to shared decision making? Can it accept the view that patients and communities are assets not a nuisance? Can it embrace engagement and consultation in genuine processes?

Finally, rejecting greed, will anyone dare disagree?

These and other questions need credible answers if the voters are to commit to significant additional funding to support a modern care system. Can Labour find the answers and use them to introduce Era 3 with the same zeal and determination that brought in Era 1?

Steve Iliffe & Richard Bourne 

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I had a nasty experience a couple of weeks ago. I was booted out of the Royal College of Nursing congress in Glasgow while distributing flyers promoting my Parliamentary Petition calling for a whistleblower hotline for NHS staff. The nurses were interested- my flyers went like hotcakes- but after 30 minutes I was told to leave by RCN Scotland officials insisting the call for a hotline conflicted with RCN policy

Whistleblower nurse Danni Gray, from Stoke-on-Trent Hospital, was incredulous that I was ordered to leave. Danni had come a cropper herself when she blew the whistle (her story is featured in the May edition of the “Nursing Standard”, Volume 30). (The picture shows her and I outside the SECC after ejection.)

Peter Gregson and Danny Gray

The RCN is not the only staff association that fears having whistleblowing discussed by its members: UNISON, UNITE, RCN & BMA have all refused to allow their Scottish members to discuss the petition, which calls upon the Scottish Government to establish an independent national whistleblower hotline for NHS staff to replace the current helpline, widely derided as useless.

Because health workers in Scotland are being blocked from debating whistleblowing, I have launched a second petition to support the campaign- a petition for a Petition and is addressed to the aforementioned unions’ leaders.

The reasons unions don’t like my proposals are made clear in this petition: they give priority to relationships with NHS executive management over members well being. I aim to use public pressure to get the healthcare unions to reverse their stand and allow staff to discuss whistleblowing improvements at branch meetings.

I am calling upon the Scottish Parliament to replace the impotent National Alert Line with an effective hotline with investigatory teeth. When staff contact the current helpline, they are referred back to their trade union or manager – which more often than not has led to either nothing happening or, worse, the whistleblower being victimised. Staff surveys found only 57 per cent of staff thought it was safe to speak up and challenge the way things were done if they had concerns about quality, negligence or wrongdoing.

The new proposal would differ in that it would independently investigate reports about mismanagement and malpractice. It would explore perceived negligence or ill treatment of a patient by a member of staff. And bullying too: the 2015 NHS Scotland staff survey revealed 15% of staff are bullied by bosses or colleagues.

The Petition is shortly to go before MSPs and union support is crucial to parliamentary approval. Please help me make Scotland’s health service safer.

Sign the petition.

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The genesis of this talk was in the realisation that my ideas have changed over thirty years, and rightly so. The days when healthcare professionals told the public what they were graciously going to do for them have gone, I hope; and I see now that some of the things I used to think were completely wrong. In fact, they are so wrong that I have managed to come to this conclusion without the need for my wife to point it out to me.

In 2000 I decided that I was fed up with doing training courses that lasted a few hours, and I wanted to do something more substantial, and I saw an advertisement in the British Medical Journal for a Master’s degree in medical law and ethics at Glasgow University. With my wife’s support – and how generous she has always been in supporting me – I completed the degree and graduated in 2003 as a Master of Philosophy. Incidentally, my graduation ceremony was in the first week of December in Glasgow, and after it the university laid on orange juice in their quadrangle gardens, an event marked by the guests clustering in tight groups trying to keep warm.

Studying law changed the way I think. Any medical science is largely a collection of facts. Our exam questions are numerous but fairly short. Having to maintain an argument over essays of 5 to 20,000 words was a new skill I had to acquire, but a really valuable one, and it began right at the outset.

One of the first topics we tackled was that of consent. As you will know, whenever you are faced with an operation, the doctors will ask you to sign a consent form. Things have changed, but when I worked there this was largely a box-ticking exercise, a step you had to go through in order to get your operation, and there were elements of the process that I could immediately see were unsatisfactory. Let me concentrate on three.

First, we ask for your consent when we conduct surgery on you. After all, your surgeon is about to attack you with a knife, and as a judge noted as far back as 1913, that is a criminal offence that is only excused by the fact that you have agreed that he or she may do so. But have you ever been asked for your consent to receiving a medicine? We have assumed that you give your consent by turning up and asking for some kind of treatment; and you demonstrate continuing consent by taking the tablets. Except, of course, that a great many people do not take the tablets; a recent estimate was that £300 million in medicines goes unused in the UK each year. The authors of that report came up with five reasons for that waste:

  • Non Compliance – where the patient takes the medicines, but not in the intended way. For example, taking at irregular intervals or in incorrect doses.
  • Intentional Non Adherence – patient stops taking medication due to side effects or personal beliefs.
  • Unintentional Non Adherence – patient stops taking medicine due to forgetfulness.
  • Non-Preventable Waste – patient dies or a change in treatment means current dispensed medicines are no longer required.
  • Preventable Waste – patient stockpiles medicines “just in case”.

But it seems a little unfair for us to complain about intentional non-adherence when the patient was never asked to agree to take the medicines in the first place.

Second, an important and necessary step in obtaining consent is that all the possible alternatives are laid out for the patient. It is true that some patients find that unhelpful, because they do not feel equipped to choose between them. Many doctors report that patients say “What would you do?” or “Do whatever you think you should.” But that is not a reason to bypass this step. And too often it is omitted in talking about medicines with patients, and they do not complain. That is one reason why I think a bolshie patient is a good thing. It challenges us to give the explanation we ought to have given in the first place.

To some extent the NHS recognises this. It has two free services for patients that pharmacies provide. The New Medicines Service involves talking to patients when a new medicine is dispensed for the first time, and twice more during the first month, because the evidence is that if a patient is going to deliberately stop it is likely to happen during the first month. It is a common experience that when you leave hospital a lot of things are said to you, sometimes when you’re just relieved to be going home, and it is hard for patients to retain and understand what was said. The New Medicines Service reinforces that information when, we hope, people are better placed to receive it. An evaluation by the University of Nottingham showed that the service increases the number of patients who correctly take a new medicine by around 16%. For existing medicines, there is the Medicines Use Review. Some people refuse these because they think their doctor is already doing it, but they are confusing two different things. The doctor carries out a clinical review – is this the right medicine for the condition this patient has? – but our Use Review looks at whether you understand how and why to take your medicines.

Let me give you an example. We noticed that a gentleman ordered his blood pressure tablets every month, but did not always order his arthritis treatment. It turned out he had plenty left over. The reason was simple. The GP told him to take one with his supper, and some nights he didn’t have supper, so he didn’t take the tablet. When we explained that what the GP meant was to take it, but not to do so on an empty stomach, he took them more reliably.

The third imperative is that whoever collects your consent should be able to answer your questions and give you a fair and complete account of the pros and cons of the treatment that is proposed. Now, here I think we may still have some work to do. The last time I was in hospital the job of getting my consent was given to a junior doctor, and you have to ask whether such a doctor is in a position to answer all the questions that we might have. It would, of course, meet the case if they start the process and then fetch someone else if there is a difficult question. But it is important that people should not feel pressured to sign until they have had all the explanation that they feel they need, and if that means being a bit bolshie, so be it.

It is also important to note that any consent you give is a limited consent. It allows only what is specified, and we have moved away from the kind of consent form that says “Do whatever you want”. It is only sensible that for some operations we include a term that allows the surgeon to get on and fix something that he finds without having to stitch you up and then start again a couple of days later; and there is always the common law duty to act in your best interests which means that if you are unable to give your consent, we do whatever we think is best for you. I hesitate to mention this so soon after lunch, but it’s a good example. The very first operation I observed was for a man who was thought to have cancer of the penis and was going to have it amputated, but when the surgeon cut into the skin it became clear that actually it wasn’t a tumour, but a very large infected cyst. Now, the only thing the surgeon could do according to the consent form was to go ahead and amputate it anyway, but instead he drained the cyst and packed it with antibiotics. That’s what we thought the patient would prefer. On the other hand, there is a famous case, Perry v Shaw, where a surgeon was sued because having performed a tummy tuck on a lady, he used the spare material to give her an unexpected breast enlargement. She went to sleep as a 34B and woke up as a 40DD, and was unhappy about it, and his defence – “I thought she’d like it” – did not impress the judge.

So here we have the first legitimate use of bolshieness – you should be fully informed of the options, the risks and benefits before you begin treatment, and if you are not, you are entitled to be politely stroppy.

Let me expand on this a bit by referring to the work of NICE and other guidelines. NICE is such a big part of our lives that we forget that we have to explain why it is important to others. The National Institute for Health and Care Excellence weighs the evidence for each type of treatment and tells us what we should be doing. For example, if you have diabetes NICE will tell you that you should be offered at least six different drugs because you have an increased risk of stroke or heart attack. That does not mean that you must accept all six, or that your doctor will be failing you if he does not insist on all six.

Let me explain why that is with some examples. One of our patients was given a statin when she left hospital. She is 89. She said the doctor told her it would prolong her life, but quite reasonably she asked me “How much difference can it make at my age? And, actually, I’m not sure I want to live longer.” My advice to her is that she is entitled to say to her doctor “Thanks, but no thanks.” So long as he is satisfied that she understands the implications, the GP will usually be happy simply to note that it was offered and refused. You’re an adult, and you’re entitled to say no. We had a lady who was given a water tablet for her high blood pressure, but because she wasn’t very mobile she had some accidents and decided she didn’t want it any more. She wasn’t too polite about how she expressed it to her doctor, and I doubt he could have put the tablets where she suggested anyway without some difficulty, but she was entitled to say no.

Better that than that she should do what another patient did. She stopped taking her water tablets, but decided not to tell her doctor in case he was cross with her. When she developed fluid on her chest, he doubled the dose, except, of course, that now she didn’t take two tablets instead of taking one. She declined further and was admitted to hospital, where the doctors looked at the treatment she had been having and decided that if two tablets weren’t working they had better give four, but by injection because it was quite urgent now. Suddenly introducing a drug she hadn’t actually been taking proved fatal. So there you are; be bolshie, don’t be dead.

People worry that their doctors will be cross with them if they argue or say no. They won’t – or, at least, the majority won’t and none of them have any right to be. After all, we regularly discuss with people at the ends of their lives how much treatment they want. It is not at all uncommon for them to say “Thanks, but I’d just like to stop the drip and go home now, and let nature take its course.” Nobody yells at them “But you’re going to die if you do that!” It’s their life, and they have every right to make that choice.

Occasionally people will say “But life is a gift from God, and we have a duty to keep it as long as we can.” I observe, however, that if the fact that life is a gift from God trumped other considerations, St Paul would have told Christians to sign anything that meant they didn’t get martyred, and he didn’t. Given a choice between spending your Saturday afternoon in the garden and finishing up as a tasty snack for a lion, I know which way my vote would be cast.

I may add that if you decline treatment, you do not have to give a reason. It’s nice to know, just so we are confident it isn’t because we have misled or confused you, but you are not obliged to share it. In a famous legal judgment known as re T, Lord Donaldson said “An adult patient who … suffers from no mental incapacity has an absolute right to choose whether to consent to medical treatment …. This right of choice is not limited to decisions which others might regard as sensible. It exists notwithstanding that the reasons for making the choice are rational, irrational, unknown or even non-existent.”

The other observation I ought to make is that the relationship between a patient and their pharmacist – or other healthcare professional – depends to a great extent upon trust. I am aware that like Mary Bennet in Pride and Prejudice, I may shortly be told that I have delighted you long enough, or I might continue at length about the grounds of trust. It matters because there have been several recent books pointing to an erosion of that trust. In fact, in many cases when we give consent, we give it not because of any rational argument we have weighed, but because at bottom we trust the professional concerned. Why do we do so?

There is an argument that trust derives from the professional standing. We trust doctors generally, even if we have not met them before, because we know that they have taken an oath to do their best for us. We know that they face professional sanctions if they do not do so. And we know of no reason why they would wish us any ill-will. Dr Shipman did not do a lot for that last argument, of course, but I worked on the aftermath of his crimes and it was remarkable that even after he had been convicted a lot of people in Greater Manchester still thought highly of him. It was easy to find people who believed that there must be some other explanation for the death of nearly a tenth of his patients.

This general trust – trust of a class of people – is one reason why some of my colleagues, particularly those who work for pharmacy chains, will argue that it doesn’t matter if you see a different pharmacist each time because they all work to the same procedures and protocols, and are bound by the same standards. All that is true, but our experience of this wonderful city and its people is that they prize the continuity of seeing a familiar face. They trust us, and they forgive us our mistakes because they know we are not indifferent to them.

I recently read an excellent little book by Professor Katherine Hawley, from the University of St Andrews, on the subject of trust, in which she points out that it would be impossible to live a life without trust. How could we sleep if we did not trust our partners not to put a pillow over our faces during the night? What could we eat if we did not trust that our supper was not poisoned?

And what is that trust built upon? It is built upon predictability. We trust because we believe that we know what the person we are trusting will do (or not do). I trust that Gillian will not strangle me in bed, because she never has, despite, no doubt, considerable provocation. I trust that she will not put deadly nightshade in my salad because it hasn’t happened yet. That is why lost trust is so hard to regain – once you haven’t behaved as predicted, how can anyone predict what you will do yet? It is, of course, possible to be predictably unreliable. David Niven once said of Errol Flynn that he was completely predictable, because he always let you down, so you never depended on him. But in our business we try to earn your trust, and to keep it once we have it, by relentlessly doing our best.

One of the delights of being in practice here for so long is that we have seen a whole generation pass through our hands. We have seen babies born who now have babies of their own; we have cared for people who were still vigorous and active, but who have become frail and dependent. We have been much blessed, personally and professionally, but we are very aware of Luke 12:48 and its reminder that much is demanded of those to whom much is given. You taxpayers paid for our education and we have been trying for nearly forty years to repay that debt in some small way.

To close: the celebrated management writer Robert Heller published a book in the eighties which mentioned my then employers, Allen & Hanburys, along with a group of others that had survived over 250 years – Barclays, Lloyds, Fry’s, Rowntrees, Terry’s to name but a few. Apart from a concentration on banking and chocolate, why had they survived when others did not, he asked? And he concluded that their Quaker beginnings had played a large part. Allen & Hanburys was also a Quaker firm and Heller argued that their belief in a duty to give their customers full weight at a fair price, to trade for the lifetime rather than the moment, was what enabled them to keep going. In short, they were trusted; perhaps less so now, but still more than some others. That’s how important trust is.

The person others might describe as a bolshie patient we see as someone who is simply trying to look after their own interests. We need more of them, because if I can’t convince you to do what I think is best, I have no right to demand it of you.

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I actually had no intention of doing any of this. To explain, I am the primary carer for a close relative of mine in hospital.

This week, I had to get a close relative in as an emergency to a large local NHS teaching hospital here in London.

I came across islets of great care. All the nurses were working around the clock. The clinicians looking after my relative indeed showed the 6Cs you’d wish for. The porters who wheeled my relative to investigations were very pleasant when I happened to be there; not stand-offish and very human.

This teaching hospital in fact saved my life in 2007, so I come to the situation with no malice at all. Quite the reverse, I have substantial respect for the staff there.

But there were aspects of really ‘not great’ care which came to my attention which alarmed me. I was close to coming to make a formal complaint, and indeed received the pack from PALS. The purpose of this complaint was to ensure that my concerns did not bubble under the radar, but actually got trapped into the corporate governance systems. In the end, none of this was necessary as my relative received a new consultant, and I had an open discussion with him and two senior nurses on the ward. They took on board my concerns, and the new Consultant who is a geriatrician described my suggestions for improvement as very good.

As a Member of the Royal College of Physicians of London myself, and fully on the medical register, I cannot interfere with my relative’s clinical issues. But sitting as a relative was stressful for me, watching aspects of bad care reveal themselves.

Last week, a cannula was ‘seen’ and not attempted – and delayed by several hours. I can’t reveal what subsequently happened due to confidentiality. As a spectator, this made my ‘carer experience’ worse.

Last week, a junior sister told me off for turning up ten minutes early for visiting hours (2 pm – 8 pm). In explaining herself, she said (verbatim), “she was well within her rights to enquire” – and then progressed to tell me nothing about John’s Campaign nor the RCN’s “Triangle of Care’ which puts at the heart of care a carer, professional and patient.

A few days ago, a medical student tried another cannula. He failed, said he would be back in 10 mins, and never returned. I then asked an hour later to the nurse why the cannula was needed. She said she had no idea. I asked her to ask the medical student whether it was still needed. The nurse looking after my relative said, ‘The medical students says it’s all sorted now.’ 20 minutes later, a porter came to take my relative for a scan, but then it transpired she needed the cannula for that. The junior doctor then explained to me for the first time why the cannula was needed. I went with my relative for the scan, returned, while my relative waited downstairs for a porter. In the meantime, my relative missed an investigation on the ward. I returned an hour later after meeting somebody totally different. On my return at 6 pm, I witnessed a third person attempt the cannula for the investigation which had been bounced to the following day.

It does nauseate me there does not seem to be people who are able to do cannulas in a timely manner on the ward, but this is actually the least of my worries.

I witnessed many examples of patients with cognitive problems not being able to remember interactions on the ward rounds. Ward rounds tended to happen in the morning, when I was not actually allowed onto the ward due to visiting hours. I witnessed other patients being taken off to investigations without any explanation at all – literally being treated as if they were cattle to be transported. I was on a ward round when a Consultant did not even bother introducing himself to me, even though I was there as a relative. Until yesterday, no medic or nurse had involved me in any shared care of the relative, as would have been consistent with the RCN’s “Triangle of Care” guidelines. I witnessed patients being seen by different clinicians every day, totally disorientating for them as they were clearly in an acute confusional state anyway. This is not person-centred care.

But there is hope. The Trust has completed a successful pilot of a handbook for all staff including porters on dementia. It’s brilliant and contains advice – such as the need to be aware that people with dementia might not communicate effectively they’re actually in pain. There will soon be a therapeutic massage service, to help with the wellbeing of carers of people with dementia. A ward somewhere there has special lighting, conductive to improved wellbeing for people with dementia and carers. And they will tentatively roll out John’s Campaign – for people with cognitive impairments who need to have a patient advocate there, this is not a luxury – this is a necessity.

I think also what made a difference was the consultant looking after my relative from yesterday being a Fellow of the Royal College of Physicians, and being dually accredited in general and geriatric medicine. The previous physician was a (good) jobbing physician for adult general medicine, but one who did not introduce himself – and he seemed more concerned about showing off to his juniors whom he called ‘boys’. That doctor in question could have concerned himself with various clinical issues of my relative, which are some of the ‘geriatric giants’. The geriatrician instead crossed off unnecessary investigations and drugs – was entirely practical – and was very keen on preventing further acute hospital admissions, improving wellbeing, and setting up a proactive support in the community for the clinical problems facing the relative.

The new consultant geriatrician viewed my relative to be independent, whereas the three AHPs who had seen my relative had tried my relative out on various mobility aids which she in fact totally hated. My conversation with the social worker was superb, contrary to my expectations. The nursing staff had thought for a week that my relative lived alone. So it was with some amusement that the new Consultant said pointedly yesterday to all of them in our formal meeting together that I lived with her.

So – progress.

I think ‘whistleblower’ is an unnecessarily strong word for the situation I found myself in. But all feedback is gold dust for the NHS, I now strongly believe. I also recommended a point of contact for all relatives. Nobody on the ward ever introduced themselves on the phone with their names or responsibilities. I thought originally the #hellomynameis campaign was a bit gimmicky, but now I 600% see where Kate Granger is coming from.

A note to this Trust – please do not treat carers as invisible, and do not treat patients as targets of investigation and speciality follow-up merely. They are persons with their own beliefs, concerns and expectations. And above all, I am pleased senior people at this Trust were utterly brilliant in acting on feedback.

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Personal budgets are in the headlines after Pulse published research based on FOI requests to CCGs.  The headline on BBC’s Today programme was “Treats instead of Treatments” and the line promoted by Pulse was that Personal Health Budgets (PHBs) lead to inappropriate ‘non-evidenced based’ spending by the NHS. The examples provided included a summer house, a Wii Fit consul, an iRobot, holidays, horse-riding, music lessons and a sat nav device; or as Pulse put it in their scare headline:

“NHS allows patients to splash cash on holidays, summer houses and Wii Fits.”

Interestingly this shock headline generated the most intense media interest in the idea of a personal budgets in my career. I have been working on these ideas since 1990, and invented the concept of personal budget.  I have seen how powerful it can be for people to have more control, choice and creativity in their lives; although I’m also very aware of how good ideas can come unstuck and be corrupted.

Thomas Edison once said of innovation, “The worst is to come, for it takes about seven years to convert the average man to the acceptance of a solved problem.” However I think that when it comes to the welfare state seven years is something of an under-estimate. Government can both resist and distort innovations, and the normal rules of human behaviour don’t apply when you are dealing with vested interests of the civil servants, politicians and the professional establishment. As Robert Townsend put it:

“It’s a poor bureaucrat who can’t stall a good idea until even its sponsor is relieved to see it dead and officially buried.”

However, once Government does get hold of an idea then everything changes. After the New Labour Government became enthused by these ideas in 2005 I watched them, quite naturally, slip from my control, and that was a humbling experience. So it was interesting for me to find myself defending personal health budgets on the BBC and Sky when they are now being implemented by a Government that I despise.

Looking at the report by Pulse in detail is also interesting, both for what it reveals and for what it hides. It provides a useful indication of the overall level of spending on PHBs, estimated at £123 million per year for 2015-16, which is just over 0.1% of NHS spending. Yet I suspect that the amount spent on things Pulse deems inappropriate must be minuscule, and I could find no relevant data.

Furthermore we learn that the number of people using PHBs is 4,800, which suggests an average package cost for individuals of £25,600. This is a significant sum and it probably reflects the fact that PHBs have been targeted on those people with most significant needs, often people on continuing care packages. However, this fact, and the significant needs of those using PHBs, was not mentioned in the report.

Another interesting point raised by Pulse was the fact that, in a survey of more than 1,500 patients by the Patient Information Forum, more than half of patients with long-term conditions felt they would be ‘unable to make decisions’ on spending a PHB. I must admit to be confused here. Surely this means that a significant number of people do feel ready to make such decisions. That sounds like a great starting point for an emerging innovation like PHBs. There is clearly significant interest and demand already.

The Pulse report also touches on some of the real issues, for example: How do we define who is eligible and what level of funding should be made available? Dr Brian Fisher rightly suggests these issues are critical and that without the necessary controls PHBs could become unaffordable. However I doubt this is the main risk for the current programme. Progress in implantation remains slow and getting a PHB is far from easy. If funding levels are successfully set around current norms then the programme will continue to generate efficiencies – not increased costs. However effective implementation will be vital if efficiency is to be guaranteed.

In contrast to this, Pulse also argues that these individual arrangements may lead to the opposite problem – increased cost-cutting. In the UK’s current context I suspect this is the bigger risk. Monolithic and institutional services are much harder to cut and much easier to defend; and while the 30% cut to social care in England may not have been caused by the use of personal budgets it certainly certainly hasn’t help to defend social care from this assault.

However the one example of cost-cutting provided by Pulse is problematic. Pulse cites a day centre that was forced to close because its funding had been put into personal health budgets. I must say this sounds quite odd to me. NHS money isn’t labelled in advance like this. Surely if the money ear-marked for personal health budgets (0.1% of spend) could not be used to fund the day centre then some of the other (99.9%) NHS spending could have been used? It sounds to me like somebody’s been making up excuses:

“Sorry, we just had to close your day centre so as to fund these wacky personal health budgets.”

In reality there was clearly not enough support from within the CCG to justify funding the day centre. More importantly, this touches on a profound weakness in the Pulse argument. If personal health budgets are of any value then they must allow people to change how money is currently used. If money is used differently then it cannot be used on the things that it was spent on in the past. Is this really a bad thing? Do services have a divine right to exist? Moreover, while Pulse questions the evidence base of PHBs, what is the evidence base for mental health day centres? People do not use day centres because it is a carefully thought through and personalised solutions to their needs. People use day centres because that is where the system has historically invested money.

The final major criticism mentioned by Pulse (although interestingly not picked up by any of the media I spoke to on the day) was the ideological question: isn’t personalisation just a right-wing neoliberal idea? Now, personally, this is the most puzzling criticism for me. I am still struggling to understand how shifting socio-economic power to disabled people or to people with long-term health conditions is right-wing. I still don’t understand why leaving power with the NHS bureaucracy or medical establishment is left-wing. We’ve got something very muddled here.

Of course I can see that there is a severe danger that the current trend to ‘target’ ‘means-test’ and ‘privatise’ may be used to undermine the principles of the NHS. However I suspect that the real risk comes from the 8-9% of NHS spending that has already been privatised to the likes of Virgin.  It is private companies, not citizens and patients, who will eventually undermine the NHS, if we choose to let them.

Behind the headlines and the arguments what is clear is that many in the medical establishment are not convinced of the benefits of PHBs and are now willing to be much more aggressive in their resistance to their expansion. So, the question we must ask is why? I can see at least two possible hypotheses:

  1. Senior doctors and others are genuinely concerned with the well being of the welfare state. They wish to defend the principles of free and universal services and to reduce inequality and poverty in the UK and they genuinely believe that personal health budgets threaten the welfare state.

OR

  1. Senior doctors don’t want to share power with patients. They are worried they will lose control and that ordinary citizens will have more control individually and may start to ask more challenging questions collectively.

Both these hypotheses would explain the extreme scaremongering that we find in the Pulse report. I hope the first hypothesis is true. For if it is the first hypothesis that is true then, over time, more and more doctors will see the benefit of personal health budgets and will understand that it doesn’t have to threaten the NHS but can be part of extending the principles upon which the NHS was built. Personal and citizen empowerment is what the NHS should be about.

Moreover if these current fears reflect a real commitment to social justice then I expect to see the BMA and other leading professional bodies come into alliance with disabled people, trade unions and with the braver charities, in order to challenge the current Government’s vicious attack on the welfare state. We will see active protests to:

  • The selling off of the NHS
  • Deep cuts to social care and the means-testing of social care
  • Cutting benefits, especially for disabled people and people who are sick

One interesting test is coming up soon, for the UK Government is currently being investigated by the UN for breaching the human rights of disabled people. I look forward to clear and powerful statements by the BMA supporting the rights of disabled people to have the resources that are necessary for them to be full citizens – whether those resources come from the NHS or from elsewhere.

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