Category: Health and Social Care

Tories propose nudge, big business AI initiative and ‘personal responsibility’ in place of adequate health care funding

Health spending by govt

A breakdown of spending on health care under each government up to 2016. Under the Major government, we saw a post code lottery of health care provision and patients were left for hours on end in hospital corridors. It’s a grim consideration that the Major government spent rather more on health care than the Conservatives in office since 2010.

Earlier this year, the prime minister was warned that patients being treated within the National Health Service are dying prematurely in hospital corridors, in a letter from A&E chiefs outlining “very serious concerns” about patient safety. 

Sixty-eight senior doctors in charge of some of the busiest accident and emergency departments in England and Wales said safety compromises are becoming “intolerable”. 

The letter includes accounts from frontline A&E doctors, one of whom warned 120 patients a day were being treated in corridors because of a lack of space on wards.

The letter said: “The fact remains that the NHS is severely and chronically underfunded. We have insufficient hospital and community beds and staff of all disciplines especially at the front door to cope with our ageing population’s health needs.”

Other issues raised in the letter, first reported in the Health Service Journal, include patients waiting up to 12 hours for a bed after doctors had decided to admit them, with queues of 50 patients waiting in one emergency department. May said that the cancellation of 55,000 appointments  was “part of the plan” for the NHS last winter, but said of her government’s response “nothing is perfect”.

The National Health Service (NHS) faces significant financial problems in many different areas. It is succeeding in treating more patients than in the past, but this rise in public need for health care, and rising costs coupled with very tight budgets, are translating into widespread pressures on the capacity of staff and managers to keep up with past performance and the standards the service sets itself.” 

Lengthening queues for treatment are happening despite the NHS treating more patients. In England, Scotland, Wales and Northern Ireland, the number of episodes of care provided in NHS hospitals has been rising. In England, for example, the number of episodes of care overseen by a hospital consultant has risen 11.4% between 2010/11 and 2015/16. It is just that the rise in the treatment provided is not keeping pace with the even faster rise in the number of people coming forward.

At the same time, EnglandScotland and Wales have all started in different ways to look at reducing the provision of treatments that may be deemed of ‘less benefit’ to patients. That means that some people who would have had treatment on the NHS before may not in future. 

This decade health services have seen some of the lowest spending increases in their history. In England, real annual increases are only around 1% a year.

Real terms spending has also been roughly flat per person since 2010 in WalesScotland and Northern Ireland.

This compares to an average increase of nearly 4% over the history of the NHS reflecting the fact that, as the OBR has found, an aging population, new technology and rising wealth all tend to increase health spending in a country.

Matt Hancock, the demedicalisation of illness and the neoliberal psychosocial model

Matt Hancock, the Secretary of State for Health and Social Care, has called on patients to have greater responsibility for their own health in the launch of new a policy paper entitled Prevention is better than cure which outlines a vision for a “new 21st-century focus on prevention”.

He says he wants to “radically change the focus of health and social care onto prevention”. 

Last month I wrote an article that pre-empted Hancock’s policy paper, published yesterday. I wrote critically about a number of his proposals in Government plans to use your phone and online data to police your lifestyle and predict ‘threats’ to your health.

Hancock has called for an increase in ‘social prescribing’ – referring patients to classes and community groups – in a bid to “shift the balance” away from GPs ‘automatically prescribing drugs for many illnesses.’  socialprescribing

He said in September“The evidence increasingly shows that activities like social clubs, art, ballroom dancing and gardening can be more effective than medicines for some people and I want to see an increase in that sort of social prescribing.” 

In practice, social prescribing means that GPs, nurses and other healthcare practitioners work with patients to identify non-medical opportunities or interventions that will help, improving support and the wider social aspects of their lives. The services that patients can choose from include everything from debt counselling, support groups, allotments and walking clubs, to community cooking classes and one-to-one coaching.

Both evidence and commons sense suggests that social prescribing may be particularly appropriate and beneficial for isolated, marginalised groups. It is a needs-led community provision that supports and enhances psychosocial health and wellbeing. However, Hancock seems to think it may be used as a substitute for medicine. 

The psychosocial approach has already been used to cut the budget for disability welfare support, with some tragic consequences. Now, the same approach in the form of social prescriptions is being proposed to cut the NHS bill. The University of York has already produced research to show that there is little good quality evidence that social prescribing is cost-effective

The Conservative government has made a link between social prescriptions, cost-cutting and (as I deeply suspected) as a mechanism of extending behavioural modification (euphemistically called “nudgingby the government’s team of behavioural economists and decision-making “experts”).

Nesta, who now partly own the government’s Behavioural Insights Team (the Nudge Unit) are of course at the forefront of promoting social prescriptions among medical professionals, firmly linking what is very good idea with very anti-democratic Conservative notions of behaviour change, citizen responsibility and small-state ideology. So, it’s no longer just about helping people to access a wider range of community-based services and support, social prescribing has also places strong emphasis on “encouraging patients to think about how they can take better care of themselves.” 

Nesta may have a whopping ‘cognitive bias’ here. A ‘perverse incentive’. It’s called the ‘profit’ incentive.

The same (bio)psychosocial model has been used to disingenuously trivialise and euphemise serious physical illnesses, implying either a psychosomatic basis or reducing symptoms to nothing more than a presentation of malingering tactics. This ploy has been exploited by medical insurance companies (infamously by Unum Provident in the USA) and government welfare departments keen to limit or deny access to medical, social care and social security payments, and to manufacture ideologically determined outcomes that are not at all in the best interests of patients, invalidating diagnoses, people’s experience and accounts, and the existence of serious medical conditions

Unum was involved in advising the government on making the devastating cuts to disabled people’s support in the UK’s controversial Welfare Reform Bill.

Hancock said in his speech at the International Association of National Public Health Institutes: “Prevention is also about ensuring people take greater responsibility for managing their own health.

“It’s about people choosing to look after themselves better, staying active and stopping smoking. Making better choices by limiting alcohol, sugar, salt and fat.”

Hancock claims it is not about “patronising” patients, “It’s about helping them make better choices, giving them all the support we can, because we know taking the tough decisions is never easy.”

“In the UK, we are spending £97bn of public money on treating disease and only £8bn preventing it across the UK”.

“You don’t have to be an economist to see those numbers don’t stack up.”

public spending

No, the numbers don’t stack up. Approximately 14 billion is spent by the Department of Health on things like public health initiatives (which aim to improve people’s health so they don’t need to use the NHS as often), education, training, and infrastructure (such as IT and building new hospitals). 

The Conservatives said in their 2015 election manifesto they would provide £8 billion in government, and expect another other £22 billion in savings from the NHS. The Nuffield Trust said this still left unanswered questions on funding:

“£8bn is the bare minimum to maintain existing standards of care for a growing and ageing population …

“improving productivity on this scale [£22 billion] would be unprecedented”

The Conservative government followed through on the commitment and then started claiming it was giving £10 billion, providing the NHS what it asked for, and more.

In their 2017 election manifesto, the Conservatives said they would increase NHS spending by at least £8 billion in real terms over the next five years, and increase funding per head of the population for the duration of the parliament.

Last year the think tanks said there would be a £4 billion gap in health spending in 2018/19 alone, but the £1.9 billion provided by the government at the end of last year meant that “around half of the minimum gap we calculated has been filled.”

They said even based on the government’s current spending plans there is likely to be a spending gap of over £20 billion by 2022/23. 

Approximately 44 % of NHS trusts—which provide secondary care to patients who’ve been referred there by a GP—were in the red in 2017/18. The figure was 65% just among acute hospital trusts—which make up the bulk of NHS trusts across England.

Collectively they finished 2017/18 with a deficit of around £960 million.

In this context, social prescriptions are used to maintain the status quo, and are likely to be part of a broader process of responsibility ascription – based on the traditional Conservative maxim of self-help, which is used to prop up fiscal discipline and public funding cuts, the extensive privatisation of public services, defense of private property and privilege, and of course, the free market. The irony of the New Right, neoliberal, paternalistic libertarianism is that the associated policies are not remotely libertarian. They are strongly authoritarian. It’s a government that doesn’t respond to public needs, but rather, it’s one that pre-determines public interests to fit within an ideological framework.

Theresa May has pledged millions of pounds to use Artificial Intelligence (AI) to “improve early diagnosis of cancer and chronic disease.” In a speech delivered earlier this year, May also called for the industry and charities to “join the NHS in creating algorithms that can predict a patient’s care requirements based on their medical records and lifestyle information.” 

The government believes that early intervention would provide “less invasive, more affordable and more successful care than late intervention,” which they claim “often fails.”  

While the government has assumed that the unmatched size of the NHS’s collection of data makes it ideal for implementing AI, many are concerned about data privacy.

Importantly, May’s proposal would (once again) allow commercial firms to access NHS data for profit.

In April 2018, a £1bn AI sector deal between UK Government and industry was announced, including £300million towards AI research. AI is lauded as having the potential to help address important health challenges, such as meeting the care needs of an ageing population. 

Major technology companies – including Google, Microsoft, and IBM – are investing in the development of AI for healthcare and research. The number of AI start-up companies has also been steadily increasing. There are several UK based companies, some of which have been set up in collaboration with UK universities and hospitals.

Partnerships have already been formed between NHS providers and AI developers such as IBM, DeepMind, Babylon Health and Ultromics. Such partnerships have attracted controversy, and wider concerns about AI have been the focus of several inquiries and initiatives within industry, and medical and policy communities. 

Last year, Sir John Bell, a professor of medicine at Oxford university, led government-commissioned review. He said that NHS patient records are uniquely suited for driving the development of powerful algorithms that could “transform healthcare” and seed an “entirely new industry” in profitable AI-based diagnostics. 

Bell describes the recent controversy surrounding the Royal Free hospital in London granting Google DeepMind access to 1.6m patient records as the “canary in the coalmine”.

“I heard that story and thought ‘Hang on a minute, who’s going to profit from that?’” he said. 

Bell gave the hypothetical example of using an anonymised data for chest radiographs to develop an algorithm that eliminated the need for chest x-rays from the ‘analytical pathway’.

“That’s worth a fortune,” he said. “All the value is in the data and the data is owned by the UK taxpayer. There has to be really serious thought about protecting those interests as we go forward.”

However, Bell highlighted a “very urgent” need to review how private companies are given access to NHS data and the ownership of algorithms developed using these records.

Hancock, the recently appointed health secretary, is now planning a “radical” and highly invasive system of “predictive prevention”, in which algorithms will use detailed data on citizens to send targeted “healthy living messages” to those flagged as having “propensities to health problems”, such as taking up smoking or becoming obese. 

People’s medical records will be combined with social and smartphone data to predict who will pick up bad habits and stop them getting ill, under radical government proposals. Of course this betrays a fundamnetal assumption of the government: that illness arises because of  bad “lifestyle choices.” 

In the policy paper released yesterday, Hancock says “Prevention means stopping problems from arising in the first place; focusing on keeping people healthy, not just treating them when they become ill. And if they do, it means supporting them to manage their health earlier and more effectively. 

This means giving people the knowledge, skills and confidence to take full control of their lives and their health and social care, and making healthy choices as easy as possible.” 

And: “Last year, over 20 million people used the NHS website. Over the next ten years, digital services will become even more widespread, and the first point of contact for many. The management of health will move out of clinical settings, and into the hands of people. Devices and applications will provide guidance and support around the clock.”

Hancock also said that Public Health England will look at “harnessing digital technology” as a form of “predictive prevention”, potentially leading to targeted health advice for people based on their their location and lifestyle. 

His focus is on “improving health, reducing demand for public services and supporting economic growth.

And: “Predictive prevention will transform public health by harnessing digital technology and personal data – appropriately safeguarded – to prevent people becoming patients. The availability of public data, combined with the existing understanding of wider determinants of health, means we can use digital tools to better identify risks and then help the behaviours of people most in need – before they become patients. 

“Historically, public health has dealt with populations as a whole – a one-size-fits-all approach. The power of predictive prevention comes from enabling people to look at their health in the context of their own life, their own circumstances, and their own behaviour. “

“This means moving beyond a simply clinical view of a body system or disease. It means envisioning a world where everyone can understand their own risks, both in their genetic make-up and from their personal behaviour. We will be able to empower people to make positive changes – and not always in ways we have traditionally thought about.”

Whenever the Conservatives use words like ’empower’, ‘help’ or ‘support’, I worry, because the ideological context of neoliberalism changes the political meaning of these Orwellian Conservative signpost words. Similarly, when Conservatives use the word ‘sustainability’, it is invariably with a view to making catastrophic funding cuts to social safety net provision and wider public services. 

Hancock says more than once: “The ambition is to prevent people becoming patients.”

Inevitably, he came to : “We want to ensure better integration between health and employment support services to help people with health conditions to enter and stay in work. This means ensuring people receive work-related advice and support within the NHS as part of making work a health outcome; on the basis that good work is good for health.” The basis is unverified.

The government conducted a survey in 2011 that showed if people believed that work is good for them, they are less likely to take time off. There is no evidence that demonstrates work is good for health. There is evidence that suggests people who are well enough to work generally do. It is not possible to ‘make’ work ‘a health outcome’. People are either healthy enough to work or they are not. The fact that healthier people work on the whole does not make work ‘good’ for people’s health. Poverty is historically linked with poor health. In work poverty has risen over the last decade. Having a job is no guarantee of escaping poverty or ill health. 

Job coaches are already asking GPs to refer patients to them, and have even suggested that GPs should make sick notes conditional on patients making an appointment with a work coach. 

Hancock’s proposals hint at a plan to extend conditionality in health care. 

Helen Donovan, Professional Lead for Public Health at the Royal College of Nursing, said: “We welcome the fact that the Health Secretary is making prevention a priority, and clearly recognises that a focus on public health will keep people healthier for longer and save the NHS money and resources in the long run.

“But Matt Hancock must realise his plans will start at a disadvantage as local authorities struggle with planned cuts to public health budgets of almost four per cent per year until 2021. While it’s clear he sees that prevention isn’t an optional extra, we need to see properly funded, accountable services delivered by a fully staffed nursing workforce backed by adequate resources. Disadvantaged areas emerge worse off without these vital services with life expectancy and the poorest bear the brunt of underinvestment in public health.”

Jonathan Ashworth MP, Labour’s Shadow Health and Social Care Secretary, said: “The Tories have imposed swingeing cuts to public health services, slashing vital prevention support such as smoking cessation services, sexual health services, substance misuse services and obesity help.

“In local communities, years of cuts and failed privatisation have resulted in health visitor and school nurse numbers falling, whilst children are losing out on the key early years health interventions they need.

“Many of the aims announced today are laudable but the reality is currently a further £1bn worth of cuts to health services including public health are set to be imposed by this Government next year.”

He added that unless the cuts were reversed, the green paper (planned for next year) would ”be dismissed as a litany of hollow promises”.

Simon Capewell, a professor of public health and policy at Liverpool University, said the minister was right to emphasise the need for effective prevention of epidemics such as obesity, type 2 diabetes and dementia.

But he added: “We must recognise the huge power of our lived environment, and avoid naively just focusing on ‘personal responsibility’ and ‘individual choices’. People do not ‘choose’ obesity or diabetes or cancer. They have just been overwhelmed by a toxic environment.”

The big drop in the last decade in the number of  UK citizens who smoke showed that firm, consistent government action was the best way to boost public health, Capewell said.

He added: “Mr Hancock can celebrate previous health successes with tobacco control. That success was built not on victim blaming, but on strong tax and regulation policies to reduce the ‘three As’ of tobacco affordability, availability and acceptability.”

Ministers need to take similarly tough action now against “the production of the commodities which harm people’s ill health, including junk food, cheap booze and fixed-odds betting terminals,” he said.

Hancock has of course denied that the government’s austerity programme had an impact on public health. In an interview for the BBC’s Today programme Hancock said: “The biggest impact on your health from the economy is whether or not you have got a job, and there are record numbers of jobs in this country.”

This of course is utter rubbish. If Hancock’s magical thinking was true, health in the UK would have dramatically improved over the last few years in line with ‘record employment levels’. But it hasn’t. The Conservatives are a party that prefers dogma over evidence, ideology over public services and the pseudopsychology of nudge over policies that meet public needs. 

Several health organisations have highlighted that local councils in England have had to cut their public health budgets in recent years, and will do so again next year, because Hancock’s department of health and social care has reduced their grants to divert more money to frontline NHS services. Many local councils have delivered preventative health programmes, but are now finding it increasingly difficult to deliver the statutory services. 

Jonathan Ashworth, the shadow health secretary, heavily criticised Hancock’s remarks. “From telling people to stand up in meetings to now lecturing people about their habits, while cutting £1bn from health services, isn’t a serious plan for improving the health of the nation,” he said.

public spending

Over the weekend Theresa May said the Conservatives “are now the natural party of the NHS” and said the Government was putting the public health system, created 70 years ago, on a path to “prosper for another 70 years and more”. That is most certainly an empirically unverified statement. 

It’s utter rubbish.

Matt Hancock Health secretary at his office

Update
Related  

Demedicalising illness and deprofessionalising healthcare: Rogue company Unum’s profiteering hand in the government’s work, health and disability green paper

GPs told to consider making fit notes conditional on patients having appointment with work coach

Government plans to use your phone and online data to police your lifestyle and predict ‘threats’ to your health

Cash for Care: nudging doctors to ration healthcare provision

Rationing and resource gatekeeping in the NHS is the consequence of privatisation

 


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GPs told to consider making fit notes conditional on patients having appointment with work coach

Thanks to  for the copy of a patient work coach letter to GPs.

One of the most worrying comments on the above letter is that despite claiming the work coach service is voluntary, and that if a patient refuses to engage “it won’t affect any benefit they get”, the letter then goes on to suggest that doctors may consider the issuing of subsequent fit notes conditional (“with the proviso that”) on their patient attending a meeting with the work coach. That one sentence simply makes a mockery of the claim that patient engagement with work coaches is voluntary. 

Illnesses don’t respond to provisos or caveats. People don’t suddenly recover when the Department for Work and Pensions decides that they are fit for work. When job centre staff tell GPs to stop issuing sick notes to patients it can have catastrophic consequences, from which the government never seem to learn. In fact they don’t even acknowledge the terrible costs that their deeply flawed policies are inflicting on citizens. 

Julia Savage is a manager at Birkenhead Benefit Centre in Liverpool. In 2016, she wrote a letter (an ESA65B notification form) addressed to a GP regarding a seriously ill patient. It said:

We have decided your patient is capable of work from and including January 10, 2016.

“This means you do not have to give your patient more medical certificates for employment and support allowance purposes unless they appeal against this decision.

“You may need to again if their condition worsens significantly, or they have a new medical condition.” 

The GP subsequently repeatedly refused to provide him with new fit notes, even as his health deteriorated, and he died months later.

James Harrison – the patient – had been declared “fit for work” and the letter stated that he should not get further medical certificates. The Department for Work and Pensions contacted his doctor without telling him, and ordered him to cease providing sick certification, James died, aged 55.

He was very clearly not fit for work.

It is very worrying that the ESA65B form is a standardised response to GPs from the Department for Work and Pensions following an assessment where someone has been found fit for work.  

The government as boardroom doctors: political jobsworths

The Department for Work and Pensions issued a new guidance to GPs in 2013, regarding when they should issue a Fit Note. This was updated in December 2016. 

In the dogma document, doctors are warned of the dangers of “worklessness” and told they must consider “the vital role that work can play in your patient’s health”. According to the department, “the evidence is clear that patients benefit from being in some kind of regular work”

As a matter of fact, it isn’t clear at all.

The idea that people remain ill deliberately to avoid returning to work  – what Iain Duncan Smith and David Cameron termed “the sickness benefit culture” – is not only absurd, it’s very offensive. This is a government that not only disregards the professional judgements of doctors, it also disregards the judgements of sick and disabled people. However, we have learned over the last decade that political “management” of people’s medical conditions does not make people healthier or suddenly able to work.

Government policies, designed to ‘change behaviours’ of sick and disabled people have resulted in harmdistress and sometimes, in premature deaths.

Call me contrary, but whenever I am ill with my medical and not political illness, I generally trust my qualified GP or consultant to support me. I would never think of making an appointment to see the irrational likes of Esther McVey or Iain Duncan Smith for advice on lupus, or to address my health needs and treatment. 

The political de-professionalisation of medicine, medical science and specialisms (consider, for example, the ghastly implications of permitting job coaches to update patient medical files), the merging of health and employment services and the recent absurd declaration that work is a clinical “health” outcome, are all carefully calculated strategies that serve as an ideological prop and add to the justification rhetoric regarding the intentional political process of dismantling publicly funded state provision, and the subsequent stealthy privatisation of Social Security and the National Health Service. 

De-medicalising illness is also a part of that increasingly behaviourist-neoliberal process:  “Behavioural approaches try to extinguish observed illness behaviour by withdrawal of negative reinforcements such as medication, sympathetic attention, rest, and release from duties, and to encourage healthy behaviour by positive reinforcement: ‘operant-conditioning’ using strong feedback on progress.” Gordon Waddell and Kim Burton in Concepts of rehabilitation for the management of common health problems. The Corporate Medical Group, Department for Work and Pensions, UK. 

Waddell and Burton are cited frequently by the Department for Work and Pensions (DWP) as providing ‘scientific evidence’ that their policies are “verified” and “evidence based.” Yet the DWP have selectively funded their research, which unfortunately frames and constrains the theoretical starting point, research processes and the outcomes with a heavy ideological bias. 

This behaviourist framing simply shifts the focus from the medical conditions that cause illness and disability to the ‘incentives’, behaviours and perceptions of patients and ultimately, to neoliberal notions of personal responsibility and self-sufficient citizenship in the dehumanising context of a night watchman, non-welfare state, absent of any notion of human rights. 

Medication, rest, release from duties, sympathetic understanding – the remedies to illness – are being appallingly redefined as ‘perverse incentives’ for ill health, yet the symptoms necessarily precede the prescription of medication, the Orwellian renamed (and political rather than medical) “fit note” and exemption from work duties. Notions of ‘rehabilitation’ and medicine are being redefined as behaviour modification: here it is proposed that operant conditioning in the form of negative reinforcement –  punishment – will cure’ ill health. 

It’s a completely slapstick rationale, hammered into shape by a blunt instrument – political ideology. People cannot simply be ‘incentivised’ (coercion is a more appropriate term) into not being ill. Punishing people for being poor by removing their support does not ‘help’ them to stop being poor, either, despite the  doublespeak and mental gymnastic pseudoscientific rubbish the government spouts.

Turning health care into a government work programme 

The government dogmatically assert “The idea behind the fit note is that individuals do not always need to be fully recovered to go back to work, and in fact it can often help recovery to return to work.” 

It was 2015 when I wrote a breaking article about the government’s Work and Health programme, raising concerns that the Nudge Unit team were working with the Department for Work and Pensions and the Department of Health to trial social experiments aimed at finding ways of: “preventing people from falling out of the jobs market and going onto Employment and Support Allowance (ESA).” 

“These include GPs prescribing a work coach, and a health and work passport to collate employment and health information. These emerged from research with people on ESA, and are now being tested with local teams of Jobcentres, GPs and employers.”

Of course the government hadn’t announced these ‘interventions’ in the lives of ill and disabled people. I found out about it quite by chance because I happened to read Matthew Hancock’s  conference speech: The Future of Public Services.

I researched a little further and found an article in Pulse – a publication for for medical professionals – which confirmed Hancock’s comment: GP practices to provide advice on job seeking in new pilot schemeI posted my own article on the Pulse site in October 2015, raising some of my concerns.

Many of us have warned that the programme jeopardises doctor-patient confidentiality, risks alienating patients from their doctors and perverts the primary role and ethical mission of the healthcare system, which is to help people to recover from illnesses. Placing job coaches in GP surgeries makes them much less inaccessible, because it turns tappointments potentially into areas of pressure and coercion. That is the very last thing someone needs when they become ill.

One worry was that the government may use the ‘intervention’ as a further opportunity for sanctioning ill and disabled people for ‘non-compliance’. People who are ill often can’t undertake work related tasks precisely because they are ill. Until recent years, this was accepted as common sense, and any expectation of sick people having to conform with such rigid welfare conditionality was quite properly regarded as both unfair and unrealistic.

I expressed concern that the introduction of  job coaches in health care settings, peddling the myth that ‘work is a health outcome’ would potentially conflict with the ethics and role of a doctor. I also stated my concern about the potential that this (then) pilot had for damaging the trust between doctors and their patients. 

In another article in 2016, titled Let’s keep the job centre out of GP surgeries and the DWP out of our confidential medical records, I outlined how GPs had raised their own concerns about sharing patient data with the Department for Work and Pensions – and quite properly so. 

Pulse reported that the Department for Work and Pensions (DWP) plans to extract information from GP records, including the number of Med3s or so-called ‘fit notes’  issued by each practice and the number of patients recorded as ‘unfit’ or ‘maybe fit’ for work, in an intrusive move described by GP leaders as amounting to “state snooping.”

Part of the reason for this renewed government attack on ill and disabled people is that the Government’s flagship fit note scheme, which replaced sick notes five years ago in the hope it would see GPs sending thousands more employees back to work to reduce sickness-related absence, despite GPs having expressed doubts since before its launch, has predicably failed.

The key reason for the failure is that employers did not take responsibility for working with employees and GPs seriously, and more than half (59%) of employers said they felt unable to support employees by making all of the legally required workplace adjustments for those who had fit notes signed as “may be fit for work.” Rather than address this issue with employers, the government has decided instead to simply coerce patients back into work without essential support.

Another reason for the failure of this scheme is that most people who need time off from work are ill and genuinely cannot return to work until they have recovered. Regardless of the government’s concern for the business and state costs of sick leave, people cannot be simply ushered out of illness and into work by the state to “contribute to the economy.”

When a GP says a person is ‘unfit for work’, they generally ARE unfit for work, regardless of whether the ‘business friendly’ government likes that or not. And regardless of the politically prescribed Orwellian renaming of sick notes, which show ‘paternalist’ linguistic behaviourism in action.

In 2017, the General Medical Council (GMC) – independent regulator for doctors in the UK – wrote a response to the government’s green paper: Improving Lives: The Work, Health and Disability Green Paper consultation. The authors of the document begin by saying ” Our purpose is to protect, promote and maintain the health and safety of the public by ensuring proper standards in the practice of medicine.”

The response continues: “Where doctors are expected to play a role in initiatives such as those set out in the Green paper, our concern is to ensure that any responsibilities that might be placed on doctors would be consistent with their professional obligations and would not risk damaging patients’ trust in their doctors. While we believe that many of the Green paper proposals are promising, we are concerned that key elements appear to present a conflict with the ethical responsibilities we place on doctors. The comments below are seeking clarification in these areas.”

And: “We understand from this Green paper, and from the Department of Work and Pensions’ published FOI response, dated 22 December 2016, that the work coaches who will conduct the mandatory health and work conversation with claimants will not be health professionals. There is a risk that claimants will not get the right support in setting health and work-related goals during this mandatory conversation if the work coach does not have clinical expertise.

“It would be helpful to know whether work coaches will be expected to have access to the claimant’s healthcare team and/or health records to inform these conversations. If so, we would appreciate reassurance that there will be a process for obtaining consent from the claimant, and providing assurance to the relevant health professionals that the individual has provided consent. Given that work coaches do not require medical expertise, we have some concerns about these conversations leading claimants to agree to health-related actions in a Health and Work ‘claimant commitment’. It seems possible that agreed actions might not be clinically appropriate for that individual or not the best course of action given their health condition. 

If a claimant commitment were reviewed by the claimant’s doctor (or other healthcare professional), and the doctor concluded that there was a health risk; then would the claimant be free to withdraw from the commitment without facing a benefits penalty? If not, then this would put the doctor and patient in a very difficult position, if it appeared that the patient had been poorly advised by the work coach and was not making an informed, voluntary decision in requesting a particular treatment or care regime from their doctor. 

We note the intention is for any agreement made in the Health and Work Conversation to be seen as voluntary. However, it seems to us that since the Conversation itself is mandatory and a Claimant commitment may influence subsequent handling of an individual’s Work Capability assessment, then in practice claimants may see these agreements as mandatory.

“As a result they may feel pressured to accept advice and make commitments which may not be appropriate in their case. This would place theirdoctors in a difficult ethical position, and we are concerned to ensure that this is not the case.

The authors add: “… we make it clear in our guidance that doctors must consider the validity of a patient’s consent to treatment if it is linked with access to benefits. Doctors should be aware that patients may be put under pressure by employers, insurers, or others to accept a particular investigation or treatment (paragraph 41, Consent: patients and doctors making decisions together).

“Difficulty could arise if a doctor does not believe that a patient is freely consenting to treatment and is instead only giving consent due to financial pressure. Doctors must be satisfied that they have valid consent before providing  treatment, which means they could be left with a difficult decision as to whether to refuse treatment in the knowledge that this could affect the patients benefit entitlements.” 

The GMC also raise concerns about how sensitive health data is collected and shared for purposes other for patients’ direct care, without patients being informed or giving consent. The government have simply proposed to access health care data to support “any assessment for financial support” and told GPs to assume consent has been given.

Promoting the myth that work is a ‘clinical outcome’ 

A Department for Work and Pensions research document published back in 2011 – Routes onto Employment and Support Allowance – said that if people believed that work was good for them, they were less likely to claim or stay on disability benefits. 

Of course it may be the case that people in better health work because they can, and have less need for healthcare services simply because they are relatively well, rather than because they work. 

From the document“The belief that work improves health also positively influenced work entry rates; as such, encouraging people in this belief may also play a role in promoting return to work.”

The aim of the research was to “examine the characteristics of ESA claimants and to explore their employment trajectories over a period of approximately 18 months in order to provide information about the flow of claimants onto and off ESA.” 

A political decision was made that people should be “encouraged” to believe that work was “good” for their health. There is no empirical basis for the belief, and the purpose of encouraging it is simply to cut the numbers of disabled people claiming Employment and Support Allowance (ESA) by “helping” them into work.

Another government document from 2014 – Psychological Wellbeing and Work – says: We know that being in work is good for wellbeing and that mental health problems are an increasing issue for the nation and so the Minister for Welfare Reform and the Minister for Care and Support jointly sought to expand the evidence base on common mental health problems.  

“A number of Government programmes assess and support those with mental health difficulties to work, but it is internationally recognised that the evidence base for successful interventions is limited. 

“The Contestable Policy Fund gives ministers alternative avenues to explore new thinking and strategies that offer cross-Government benefits. This report was commissioned through this route.” 

And: “Within the time and resources available for this study the research team did not undertake extensive assessment of the quality of the evidence base (eg assessing the research design and methodology of previous studies)”

The government have gone on to declare with authoritarian flourish that they now want to reinforce their proposal that “work is a health outcome.” Last year, a report by the Mental Health Task Force and chaired by Mind’s Paul Farmer, recommended that employment should be recognised as a ‘health outcome’.  I’m just wondering how people with, say, personality disorders, or psychosis are suddenly going to overcome the nature of their condition and all of a sudden successfully hold down a job for a minimum of six months.

Mind those large logical gaps… 

This has raised immediate concerns regarding the extent to which people will be pushed into work they are not able or ready to do, or into bad quality, low paid and inappropriate work that is harmful to them, under the misguided notion that any work will be good for them in the long run.

It has become very evident over recent years that the labour market is not delivering an adequate income for many citizens and despite “record levels of employment”, the problem seems to be getting bigger. The government’s answer to the problem has been to extend punishment those on low pay, rather than tackle employers who pay exploitative, low wages.

The idea of the state persuading doctors and other professionals to “sing from the same [political] hymn sheet”, by promoting work outcomes in social and health care settings is more than a little Orwellian. Co-opting professionals to police the welfare system is very dangerous. 

In linking receipt of welfare with health services and “state therapy,” with the single intended outcome explicitly expressed as employment, the government is purposefully conflating citizen’s widely varied needs with economic outcomes and diktats, isolating people from traditionally non-partisan networks of relatively unconditional support, such as the health service, social services, community services and mental health services.

Public services “speaking with one voice” as the government are urging, will invariably make accessing support conditional, and further isolate already marginalised social groups. Citizens’ safe spaces for genuine and objective support is shrinking as the state encroaches with strategies to micromanage those using public services. This encroachment will damage trust between people needing support and professionals who are meant to deliver essential public services, rather than simply extending government dogma, prejudices and discrimination.

State micromanagement of tenants

The GMC say in their response to the government’s proposals: “We are unclear about the evidence that might support a move to the position that ‘being in employment’ should be regarded as a ‘clinical outcome’ that healthcare professionals are expected to work towards with people of employment age seeking health-related advice and treatment. This is a highly contentious issue and indeed Dame Carol Black’s report certainly makes clear that there is limited support for this within the profession.” 

I’m not unclear. There is no evidence. In an era of small state neoliberalism and ideologically driven austerity, it is an act of sheer political expediency to claim that ‘worklessness’ is the reason for the poor health outcomes that are in fact correlated with increasing inequality, poverty and lower standards of living – higher mortality;  poorer general health, long-standing illness, limiting longstanding illness; poorer mental health, psychological distress, psychological/psychiatric morbidity; higher medical consultation, medication consumption and hospital admission rates.

Both social security and the National Health Service have been intentionally underfunded and run down by the Conservatives, who have planned and partially implemented a piecemeal privatisation process by stealth, to avoid a public backlash.

Unemployment (not ‘worklessness’ –  that’s part of the privileged discourse of neoliberalism, which serves to marginalise the structural aspects of persistent unemployment and poverty, by transforming these into individual pathologies of benefit ‘dependency ‘and ‘worklessness’) is undoubtedly associated with poverty, because welfare provision no longer meets the most basic living costs.

However to make an inferential leap and claim that work is therefore ‘good’ for health’ is incoherent, irrational and part of an elaborate political gaslighting campaign of an authoritarian government, who simply don’t want to address growing poverty and inequality caused by their own neoliberal policies.

The direction that government policy continues to be pushed in represents a serious threat to the health, welfare, wellbeing, basic human rights, democratic inclusionand lives of patients and the political independence of health professionals.


Related

The new Work and Health Programme: government plan social experiments to “nudge” sick and disabled people into work 

Illustration by Jack Hudson

 


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British Medical Association proposals deemed passive ‘euthanasia by stealth’ for disabled people with degenerative illnesses

Image result for euthanasia 

The British Medical Association have put forward proposals in response to legal test cases in which judges ruled that qualified NHS staff and officials no longer required a court’s permission to withdraw artificial nutrition and hydration from those patients who are incapacitated and unable to communicate or feed themselves.

The Supreme Court justices’ decision in July supported the right of doctors to withdraw life-sustaining nutrition on their own authority, provided they had the explicit permission of the patient’s family or, where no family existed, medical proxy. If there is a disagreement and the decision is finely balanced, an application should still be made to the Court Of Protection. 

The Court of Protection is the specialist court for all issues relating to people who lack capacity to make specific decisions. The court can make decisions and appoint deputies to make decisions about someone’s property and financial affairs or their healthcare and personal welfare.

Under the Mental Capacity Act 2005 (which is also currently being re-written by the government), the court has the power to:

• make decisions about the personal welfare or property and financial affairs of people who lack the capacity to make such decisions themselves;
• make declarations about a person’s capacity to make a decision;
• make decisions in relation to serious medical treatment cases, which relate to providing, withdrawing or withholding treatment to a person who lacks capacity;
• authorise deprivation of liberty in relation to a person’s care and residence arrangements;
• appoint a deputy to make ongoing decisions on behalf of a person who lacks capacity, in relation to either the person’s personal welfare or property and financial affairs; and
• make decisions about a Lasting Power of Attorney or Enduring Power of Attorney, including whether the power is valid, objections to registration, the scope of the  attorney’s powers and the removal of attorney’s powers

According to the draft proposals currently being circulated by the British Medical Association (BMA), doctors should be granted the authority to end the lives not only of those patients who are near death or in vegetative or minimally conscious states but also “the much larger group of patients who have multiple co-morbidities, frailty or degenerative neurological conditions.”  

This also includes stroke patients and those with “rapidly progressing brain injury.”   

However, on the NHS site, it says: “In most cases, a minimally conscious state isn’t usually considered to be permanent until it’s lasted several years. 

“It’s impossible to predict the chances of someone in a state of impaired consciousness improving.” 

“Supportive treatment is used to give the best chance of natural improvement. 

“This can involve:

  • providing nutrition through a feeding tube 
  • making sure the person is moved regularly so they don’t develop pressure ulcers
  • gently exercising their joints to prevent them becoming tight
  • keeping their skin clean
  • managing their bowel and bladder (for example, using a tube known as a catheter to drain the bladder)
  • keeping their teeth and mouth clean
  • offering opportunities for periods of meaningful activity – such as listening to music or watching television, being shown pictures or hearing family members talking.” 

And importantly: “It’s impossible to predict the chances of someone in a state of impaired consciousness improving.”

The authors of the BMA document say: “Due to the degenerative nature of their condition, these patients are on an expected downward trajectory and will inevitably die, usually as a result of their underlying condition, although perhaps not imminently and could, potentially, go on living for many years.”

In the Executive Summary of the BMA document, it says that no second opinion need be obtained unless there is ‘reasonable doubt about the diagnosis or prognosis, or where the healthcare team has limited experience of the condition in question’ [ …] ‘it is not necessary to wait until (investigations) have been completed’ if there is not ‘sufficient evidence’ that they will ‘affect the outcome of the best interests assessment’ 

Nutrition and hydration delivered by tubes is currently legally defined as ‘medical treatment’ and not ‘basic ‘care’.  

There have been a number of legal developments that change the way such decisions about life-prolonging treatments are made, in addition to the recent court judgments and the government’s radical withdrawal of the Court of Protection’s Practice Direction 9E which addresses protections concerning serious medical treatment.

The direction was effectively abolished by the Ministry of Justice  and the changes came into effect last December. The Court of Protection in English law is a superior court of record created under the Mental Capacity Act 2005. It has jurisdiction over the property, financial affairs and personal welfare of people who lack mental capacity to make decisions for themselves. 

As the changes to protections were introduced via secondary legislation – a negative resolution statutory instrument – there was very little parliamentary scrutiny. Furthermore, as the instrument is subject to negative resolution procedure no statement regarding implications in relation to the European Convention on Human Rights was required from government ministers, nor was public consultation deemed necessary. An Impact Assessment has not been prepared for this instrument. 

The fact that the UK government had already made amendments to safeguarding laws to accommodate these proposals, which took effect last December, and now plan to make it easier to remove people’s liberty under the Mental Health Act without public consultation, has caused deep unease. In the latest proposed changes to the Mental Health Act, the government seems to think it is appropriate to consider restrictions of people’s liberties as part of their overall ‘care package.’

Picture

The Law Society has issued a rather damning briefing on the Mental Capacity (Amendment) Bill 2018 that moved to a Lords committee stage, early last month.

In their briefing, the society say: “While agreeing that simplification is needed and acknowledging that there are resource constraints, these constraints are “insufficient justification for not implementing fully the safeguards recommended by the Law Commission.” 

It is in light of the most recent change in legislation that the British Medical Association (BMA) put forward  proposals that mean doctors may be permitted to end the lives of patients who may otherwise have survived for years, by the withdrawal of nutrition and hydration, without the need to go to court. While this reduces substantial cost to the NHS in terms of legal fees and in the prolonged treatment for some patients, not everyone is comfortable with these developments.

Writing critically about the legislation changes last year, Mohamed Y Rady and Joseph L. Verheijde say:

“(1) starvation and dehydration is certain to cause death without the presence of concurrent life-limiting disease or life-threatening illness and (2) the dying process by starvation and dehydration can last two to three weeks and can be distressful to both patients and their families. We disagree with the legal and clinical stipulation (post-Bland [a legal case]) that assisted nutrition and hydration (ANH) is medical treatment. Instead, as adopted in many other jurisdictions, we hold that ANH constitutes ‘a basic compassionate care service rendered to disabled persons’. 

“We think that court oversight is of practical importance for the safety of the general public and the protection of vulnerable disabled persons in society.

“We outline our rationale for advocating that court oversight should not be limited to Vegative State/Minimal Conscious State but should include any person.”

The authors added:  “The clinical guidelines have distinguished only three levels of disorders of consciousness (DOC) (coma, Vegative State (VG), and Minimal Conscious State (MCS) based on clinical assessment for the presence or absence of awareness and wakefulness. However, the diagnostic accuracy of the guidelines’ criteria and definitions of the three levels of DOC has not been validated scientifically. Cohort studies suggest that the rate of clinical misdiagnosis in VS is at least 41% and this error rate has not declined over the past 15 years.

“Incorrect diagnosis can result in a fatal outcome because of premature withdrawal of medical care and ANH. The clinical guidelines have not yet acknowledged the relevance of contemporary neuroscience advances to increase the diagnostic accuracy and expand on the available therapeutic options in DOC. Incorrect diagnosis and/or withholding of therapy in DOC violates the trust of families in the transparency and truthfulness of clinicians who are making life and death decisions on behalf of their loved ones.

“The clinical guidelines have recommended that a neurological diagnosis and prognosis should be made at least within four weeks after the onset of prolonged DOC to determine futility of continued medical care and ANH (Royal College of Physicians of London. Under these circumstances, we propose that court oversight can provide an additional safeguard by including independent neuroscience experts to confirm the clinical diagnosis and prognosis of DOC and to ensure that the decision-making processes are well-informed and as rigorous as possible. Life and death decisions in DOC should be supported by contemporary neuroscience, among other considerations, and not be based on outdated clinical guidelines.”

In summary, the authors propose that until such time as we have greater clarity and understanding about the disorders of consciousness, and about the legal and ethical principles to be applied, there remains a need for independent oversight and that applications to the court should continue to be obligatory in all cases where the withdrawal of ANH is proposed, at least for the time being.

Their paper can be read in full here.

The BMA proposals to withdraw nutrition and hydration tubes have also been condemned as ‘euthanasia by stealth’.

Dr Peter Saunders, from the group Care Not Killing, said: “This is a recipe for euthanasia by stealth, but all in the name of autonomy and best interests – the very worst kind of doctor paternalism justified on the grounds that the patient would have wanted it.

“There are conceivably tens of thousands of patients in England and Wales who are vulnerable to the use and abuse of this guidance.

“It will be almost impossible to work out what has happened in a given case and there are no legal mechanisms in place for bringing abusers to justice.”

The landmark Bland ruling set down that artificial nutrition and hydration by tube are not normal feeding but ‘medical treatment’. It also said that it might not be in a patient’s best interests to be treated, and if medical treatment is not in the best interests of a patient who cannot speak for themselves, it can be stopped. Tony Bland, a Liverpool football supporter was just twenty-two when he suffered severe brain damage in the crush at Hillsborough football stadium in April 1989. The court ruled that he should be allowed to die.

The BMA document was circulated, however, in June. This follows after a court ruling in 2017, which concluded that there was no requirement for court approval before removing patients’ nutrition and hydration tubes.

More recently in July, the country’s highest appeal court, the Supreme Court, ruled in the test case of a patient known only as ‘Y’ that doctors can decide a patient should die without reference to a court.

A spokesman for the BMA said that decisions surrounding the withdrawal of clinically assisted nutrition and hydration (CANH) presented “clinical, ethical and legal challenges.” 

He added: “Following a number of legal developments, the BMA has been working with the Royal College of Physicians and the General Medical Council to produce guidance on best practice for health professionals when facing decisions about CANH.

“CANH is a form of medical treatment. The aim of medical treatment is not simply to prolong life at all costs, and the courts have been clear that in some circumstances it will not be in the best interests of the individual patients to receive it.

“Those making these decisions must do so in full dialogue with families to determine what is right for the individual patient, and of course, when there is any disagreement the court still has an important role to play.”

These proposals come at a time when health care has been subjected to increasing rationing. 

The BMA document says that the decisions on removing nutrition and hydration tubes should be taken by consultants for hospital patients, or GPs for those in nursing or residential homes or living in their own homes. It was suggested that families or friends should be consulted, usually through ‘best interests meetings’ set up to decide whether it would be better for a patient to live or die. However, the BMA suggested that family and friends should not have the final say on the matter.

In the Executive Summary, the BMA say that no second opinion need be obtained unless there is ‘reasonable doubt about the diagnosis or prognosis, or where the healthcare team has limited experience of the condition in question’ [ …] ‘it is not necessary to wait until (investigations) have been completed’ if there is not ‘sufficient evidence’ that they will ‘affect the outcome of the best interests assessment’ 

Shockingly, the BMA also propose that when patients die after the withdrawal of nutrition and hydration tubes, this should not be mentioned on death certificates. Instead only the underlying original condition should be given.

Professor Patrick Pullicino, from East Kent Hospitals University NHS Trust, said that this directs doctors to falsify death certificates. It tells doctors to put down the pre-existing condition and not that they died of dehydration. It will totally conceal the statistics of patients who are being dehydrated to death.”

Understandably, doctors and campaigners who are opposed to euthanasia and the deliberate termination of life by medical staff have condemned the proposals.

Pullicino, who is the consultant that helped expose the controversial hospital deaths under the discredited Liverpool Care Pathway, said the BMA plan was ‘terrible’. 

He added: “It codifies current practices of withdrawing food and fluid at the end of life and thereby encourages it.

“It facilitates the extension of end-of-life pathways to people with neurological diseases who are not dying, which is a very negative thing because there are a lot of disabled neurological patients.

“It perpetuates the myth of ‘best interests’, which has been shown to be erroneous and reflective of members’ views and not of the real best interests of the patients.”

I agree. My inital thoughts are that we need to guarantee people with disabilities have access to high quality palliative care. We need to have a process which reviews every incidence of proposed euthanasia, and that panel needs to include people with disabilities. We need to ensure that family members and service providers or anyone else who will benefit financially cannot abuse any application for end of life withdrawal of clinically assisted nutrition and hydration.

We also need to ensure the absolute transparency and accountability of decision-makers, which must include an accurate and honest record of cause of death on death certificates. Coroners have a duty to prevent future deaths, where medical mistakes have been made.

There is no clear definition of ‘degenerative diseases’ in the BMA document. Some illnesses, such as multiple sclerosis, lupus and other autoimmune mediated diseases, for example, may be progressive. Several of these illnesses may affect the neurological system. Most of the treatments for this group of disorders are experimental. People can improve over time, with or without some treatments, following periods of being critical ill. Many of the treatments are only prescribed as a last resort, as they are prohibitively expensive (biologics in particular) especially at a time of heavy NHS funding cuts. The outcomes of these diseases are widely variable from one person to the next. People may have indefinite remissions after years of being seriously ill. 

Even if these types of disease are not currently included in the BMA guidelines, complications or co-morbidities and frailty arising over the course of an illness may be.  

What guarantee do we have that the categories won’t expand over time?

The legislative changes have been couched in terms of ‘saving money’. The purpose of the NHS is to save lives. Everyone has the basic right to life, that must not be contingent on the ideological preferences of a ‘small state’ neoliberal government. ‘Best interests’ are not an political category, nor are they open to ideological interpretation. 

The UK government’s brand of ideological paternalism towards poor people claiming welfare support, for example, involves the removal of the means of meeting basic survival needs as a punishment in the form of sanctions, also considered to be in people’s ‘best interests’.

Unemployment itself has been redefined as a psychological or character disorder over the last few years, and the welfare state has become a political environment for administering discipline, which has shifted it away from the original purpose of providing basic support and alleviating poverty. Behavioural economics has contributed to bolstering this perspective by pathologising people who need support from publicly funded public services via claims of ‘cognitive deficits’ of poor people, rather than acknowledging the structural explanations of poverty.  Perish the thought that a socioeconomic system founded on competition would foster inequality. 

In healthcare there has been a shift towards ‘behavioural medicine’ too, apparent in the controversial PACE trial and a general emphasis on people’s ‘lifestyle choices,’ and personal responsibility. However these are extremely overly simplistic ideolological narratives that have not emerged because of robust empirical evidence. Public services were not originally designed to punish poor people who need them. Yet the withdrawal of the means of citizens meeting their basic survival needs seems to have become normalised. Pathologising and punishing people who need the support of public services has somehow become acceptable. 

The increasing rationing of treatments within the NHS and the neoliberal logic underpinning this is also a cause for concern. People who need support from any public service are subjected to increasing conditionality and rationing in an era of neoliberal austerity.

A spokesman for the BMA said that decisions surrounding the withdrawal of clinically assisted nutrition and hydration (CANH) presented “clinical, ethical and legal challenges.” 

He added: “Following a number of legal developments, the BMA has been working with the Royal College of Physicians and the General Medical Council to produce guidance on best practice for health professionals when facing decisions about CANH.

“CANH is a form of medical treatment. The aim of medical treatment is not simply to prolong life at all costs, and the courts have been clear that in some circumstances it will not be in the best interests of the individual patients to receive it.

Those making these decisions must do so in full dialogue with families to determine what is right for the individual patient, and of course, when there is any disagreement the court still has an important role to play.

“We shared the draft guidance in confidence with legal and health professionals and organisations and patient support groups to seek their views. The final version will reflect last month’s Supreme Court judgment when it is published this year.” 

The guidance says it is based on the current legal position which it defines as follows:

  • Clinically assisted nutrition and hydration (CANH) – essentially food and fluids by a fine tube through the nose or through the skin into the stomach – is a form of medical treatment
  • Treatment should only be provided when it is in a patient’s ‘best interests’
  • Decision makers should start from the presumption that it is in a patient’s best interests to receive life-sustaining treatment but that presumption may be overturned in individual cases
  • All decisions should be made in accordance with the Mental Capacity Act 2005 (which the government is proposing to amend).

The 77-page ‘confidential’ document, which is currently out for ‘consultation’ (although only to a few selected individuals), has been prepared by the BMA in conjunction with the Royal College of Physicians (RCP) and the doctors’ regulatory authority, the General Medical Council (GMC). It will not be open for public consultation at any point before publication later in the autumn.

The draft guidance, which builds on case and statute law and on previous practice guidelines, has huge implications for the care of some of the most vulnerable people in England and Wales.

However, it does not permit assisted dying – which is when a patient wants to end their life. British parliaments have consistently refused to legalise active euthanasia or assisted suicide for people with a quality of life they would not find ‘acceptable’ or would not ‘have wanted’. The BMA is proposing that doctors, not patients should make the choice to end a life, and that to end lives by starvation and dehydration, rather than with a lethal injection, is somehow perfectly acceptable.

So acceptable in fact that the BMA propose starvation and dehydration or withdrawal of care (or treatment if you wish) should be left off the death certificate, suggesting instead that the ‘underlying medical condition’ should be recorded as the cause of death. This suggestion does not inspire confidence in transparency and accountability concerning such fundamentally irreversible medical decisions, since the record of death hides errors in judgment and diagnoses, prevents scrutiny and prevents coroners from fulfilling the mandatory obligation to ‘prevent future deaths’ in the case of medical incompetence, negligence, abuse, deceit and error.

 


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Charity survey shows three-quarters of adults in England back free personal care for over-65s

Image result for pictures of elderly people holding hands

An older people’s charity, Independent Age, is calling for free personal care for all those who need it in England, who are aged 65 and over, to help address the social care crisis. In a new survey conducted by YouGov, exclusively for Independent Age, the majority of adults in England said they would support paying more in tax or a lump sum to fund free personal care. 

Independent Age has released a new reportA Taxing Question: How to pay for free personal care, produced in conjunction with Grant Thornton UK LLP and The Social Market Foundation, which looks at various funding options for social care, including what they would cost the individual and what the funding situation might look like in 10 years’ time.

The YouGov poll of more than 2000 English working-age adults from a UK-wide sample, showed that almost three-quarters (74%) of adults in England support free personal care for everyone who needs it, with more than two-thirds of adults in England (69%) agreeing that they would be willing to pay more tax to provide free personal care for all, either through a small increase in Income Tax (27%), a small increase in National Insurance (25%), a new small tax for people aged between 40 and retirement age (11%) or paying a lump sum on retirement (6%). This high level of support is consistent across the political spectrum and demographic groups based on, gender, age and region. 

Some of the most viable options discussed in the report include increasing Income Tax and increasing National Insurance, these two options had the most support in the poll. Other options that would be viable include asking everyone between the ages of 40 and retirement age, and their employers, to pay a new small tax; or asking those who can afford it to pay a lump sum of £30,000 on retirement.

Looking at increasing all rates of Income Tax as an example, this would:

  • Generate an extra £6.10 billion in 2020/21 if raised by just 1%
  • Be able to provide free personal care for all in 2020/21 if raised by 1.09%
  • Be able to provide free personal care for all in 2030/31 if raised by 2.11%
  • Cost an individual earning the national average annual salary of £26,832 around an extra £12.47 a month if their Income Tax contribution was increased by 1%, which would equate to approximately £7,033 over 47 years (assuming their salary remained the same from 18 to 65).

Free personal care for all would mean providing the support a person needs for everyday activities, including things such as getting in and out of bed, getting dressed, preparing a meal or shopping. This type of care can be provided at home or in a care home, but does not include costs such as food, utilities or other expenses. 

It would also simplify the system, making it easier for people to know exactly how much they’d need to pay while receiving care, and what they’d get in terms of support in return, as well as making it quicker to transfer patients out of hospital. It would also mean that no-one would have to sell their home in order to pay for care. Furthermore, the cost of introducing free personal care is only slightly more in terms of cost than the government’s proposals to deliver social care reforms.

Free personal care at home for people aged 65 and over is currently available in Scotland, which shows that it is viable proposal. It has helped to integrate the care system with the NHS, because setting up care packages is less complicated, and does not need to include discussions about income. Overall NHS costs have decreased in Scotland, delayed transfers of care have decreased, and more people are receiving care at home, allowing them to retain their independence.

A social care system that is not means-tested puts it on the same level as the NHS, and provides a more equal service for those who need it. The report has tried to address some of the issues of the still underfunded Scottish model and offer solutions for sustainable, long-term funding.

However, the report says that there are no ‘easy solutions’, with no single funding option delivering the level of reform that the public want and older people need in ten years’ time. Some funding options, including increasing business rates or Corporation Tax, increasing Council Tax or Inheritance Tax, or charging National Insurance for the over 65s, fall far short of addressing the current social care funding gap.

The report discusses how the proposed funding mechanisms would achieve both the Government’s proposed “cap and floor” model and free personal care, concluding that ultimately the difference between the costs would be relatively small in government terms – around £1 billion in 2020/21, rising to £2 billion in 2030/31 – but that free personal care would result in significant benefits for all older people. A policy of free personal care for all would also send a clear message about how we, as a country, value older people.

Janet Morrison, Chief Executive of Independent Age, says, “Many older people are being let down by a social care system in crisis that is failing to meet their needs. Giving older people the right to free personal care would change that. Not only is it what people want, but they are also willing to pay a bit more tax to get it. It is simple and costs a similar amount to the government’s preferred proposals. However, the government also needs to ensure people are getting the support they need, or the public will not tolerate contributing more in tax or other means to pay for social care.

“In addition, free personal care would significantly reduce the number of older people marooned in hospital due to lack of available personal care, support the joining-up of health and social care support and ultimately enable many more older people to live independently and stay in their own homes for longer.”

The government needs to recognise that if people are being asked to pay more, they need to be reassured that the system is better than it was, and has addressed previous failings, so that it meets the needs and expectations of older people in terms of both availability and quality.

Alex Khaldi, Partner and Head of Social Care Insights, Grant Thornton UK LLP, comments, “With public sector finances edging ever closer to a tipping point, this report marks an important contribution to the ongoing debate around the future of social care funding. Presenting the financial output of each funding option, along with the tax implications, provides a detailed picture of what should be seriously considered going forward.

“Time is running out to address the funding question surrounding the future of our struggling social care system, and it is vitally important that taxation is brought into the discussion to ensure we create a funding system that is fair for everyone. While we know there is no one easy option, this report makes it clear that many people are not adverse to the idea of increased taxation, as long as it is used as intended.

“We hope this analysis forms a useful part of the public debate to help address the growing gap between the increasing demands of a changing demographic and the funding of the system designed to support them.”

Independent Age is urging the government to introduce a social care contribution aligned to a commitment to provide free personal care, to help improve social care for older people, now and in the future. This will not only make it easier for people to navigate the system, but will also reduce NHS spending, make transfers of care from hospital faster, and will allow more people to live at home independently for longer.

It is also recommended that the government should allocate immediate funding to ensure the funding gap does not increase as a minimum. In the long-term, there needs to be a commitment within the NHS 10-year plan, and social care reforms, to radically reform public health and preventative care, to enhance older people’s independence.

 


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