Chronic Fatigue Syndrome 2

The Eye received many supportive letters for stating Chronic Fatigue Syndrome/ME has biological causes but also some criticisms. As one doctor put it: ‘Every illness had a physical, psychological and social component, and limiting diagnosis or treatment to only one aspect of someone’s illness is likely to lead to a much poorer outcome. This ‘triple diagnosis’ applies to any disorder you care to consider, although obviously in varying proportions. The one exception seems to be CFS/ME where any suggestion that there might be a psychological or social component leads to criticism. That Cognitive Behavioural Therapy (CBT) is the only treatment which has repeatedly been shown to have any benefit is conveniently ignored.’

ME campaigners don’t ignore the fact that CBT and Graded Exercise Therapy (GET) have been shown to work in randomised controlled trials and are endorsed by lofty scientific institutions such as the Cochrane Collaboration and NICE, but they do challenge the science. The PACE trial, which compared four non-drug treatments for CFS/ME, has caused particular controversy and activists have had to fight to gain access to some of the data which they are reanalysing to determine if claims about the efficacy of GET and CBT have been overstated. The PACE researchers have done their own reanalysis of their data and believe their original results to be valid. MD has a long list of credible scientists who believe the PACE trial findings, and an equally long list of those who don’t. Who do you believe?

Because there is no biological test for CFS/ME, it may be that we are dealing with different illnesses. Those with mild to moderate CFS may get better with CBT and GET – and some may even get better on their own. Many activists believe these patients have chronic fatigue but not ME. Those with severe CFS (which many activists recognise as ME) are often housebound or wheelchair bound and some may be made worse by the demands of CBT and GET. Other activists are adamant that CFS and ME are completely different. The debate is unlikely to be resolved until there are definitive diagnostic tests, which is one reason why more research is needed.

MD agrees that the split between mind and body is unhelpful, and there are indeed physical, psychological and social elements in all illnesses, either as causes or consequences. But it was doctors who initially dismissed a physical basis for CFS/ME, and as a consequence insufficient attention and resources have been given to doing large scale biological, nutritional and genetic studies that might provide alternative treatments to the non-drug options currently on offer. In MD’s experience, CBT can help treat distressing anxiety and depression, and it can help people live with any chronic disease whatever the causes. But we should investigate pharmacological and nutritional treatments too. There are a significant number of CFS/ME patients who aren’t helped by current treatments. Genetic studies may reveal that CFS/ME is in fact multiple different disorders requiring different approaches. And given the large number of people affected (250,000 in the UK), we need to do this research.

MD has now listened to around six hundred NHS patients up to the age of 19 who have been referred because profound fatigue has led to a drastic reduction in their previous levels of activity, usually with significant school absence. Families are desperate for help. The consultations are up to 90 minutes long, with breaks, and can be very complex. Some patients have CFS/ME, some have chronic fatigue likely to be due to other causes, and many have a mixture of both. It is not unusual to see young people who not only have very disabling fatigue, but also anxiety, depression, a history of a self-harm or an eating disorder. They may have diabetes, autistic spectrum disorder or ADHD. They may be bullied, live in poverty, have chaotic lives or exam overload. Often they are socially isolated and not believed. Sometimes it isn’t easy to figure out precise causes for the fatigue, even in 90 minutes.

Because there isn’t yet a specific diagnostic test for CFS/ME, the diagnosis is made on criteria which inevitably have an element of subjectivity. We try to take into account other potential causes of fatigue. All patients diagnosed with CFS/ME have profound post-exertional malaise that can completely wipe them out for hours, days and even weeks (see Eye last). All have unrefreshing sleep. Most recall a time when they were very active and full of energy and a clear trigger to the symptoms starting, usually an infection. Most young patients who are able to engage in treatment recover in time.

Current NHS provision for help with CFS/ME is very patchy and many children and adults have no access to any treatment locally. Those most severely affected are often housebound, with cuts in domiciliary visit funding delaying or preventing assessment. Carers often have to give up work. Complex physical, psychological and social issues abound in all chronic disease, but prejudice mustn’t blind us from looking for genetic causes and drug and nutritional treatments, or trying and trialling the non-drug treatments we already have. Research data must be shared for others to fairly analyse and use. But ultimately, individual patients decide what works for them, and what doesn’t.

Note: The ME/CFS Epidemiology and Genomics Alliance (MEGA) has recently been set up to try to improve the scientific understanding of ME/CFS, and investigate the biology of the illness. It comprises a group of 15 UK scientists and four patient charities (Action for M.E., the Association of Young People with ME, the ME Association and ME Research UK, with Action for M.E. taking a representative role) who have come together to establish a big data research study of over 10,000 adults and 2,000 children and young people. More details here

Chronic Fatigue Syndrome 1

MD’s greatest regret as a junior doctor was not to take the time to understand ME (Myalgic Encephalopathy). As a result, MD was infected with the same prejudices as many of his peers, namely that ME isn’t a biological illness and that it predominantly affects middle class patients (‘Yuppie flu’). Both beliefs are entirely wrong, and I apologise unreservedly for them. They have caused huge distress and damage to those with ME. Medicine has particularly failed those with severe ME, many of whom have lived for decades with a very disabling disease and the enduring falsehood that it’s ‘all in the mind’ or due to ‘faulty beliefs’. Psychological illness can be as distressing and real as any physical illness, and often the two occur together. But ample evidence exits of biological abnormalities in patients with ME, though we are some way off having a definitive pathological test and effective drug treatments.

ME is often used synonymously with Chronic Fatigue Syndrome (CFS), but the illness is far more than fatigue. MD’s view – working in an NHS clinic for young people with chronic fatigue – is that ‘CFS/ME’ is a cluster of disorders which centre not just on severe, disabling fatigue but on post exertional malaise (PEM). This means that previously very active patients can suddenly crash after physical or cognitive activity, which completely wipes them out for at least 24 hours and often much longer, with multiple unpleasant symptoms. Anyone who has lived through or observed such crashes is left in no doubt that the disease isn’t psychological.

CFS/ME is often – but not always – triggered by a viral infection. Nausea, severe pain, headaches, sensitivity to light, sound and touch, cognitive dysfunction and dizziness caused by faulty blood pressure control (orthostatic intolerance) are common. Patients also suffer poor and unrefreshing sleep, waking up feeling utterly exhausted. A huge reduction in energy is accompanied by an inevitable reduction in previous levels of activity. In young people, CFS/ME is the commonest cause of long term school absence, and the threat of legal action for poor attendance is all too common.

In 2015, the US Institute of Medicine reviewed over 9000 research articles and concluded ME has a biological basis and is a ‘serious, chronic, complex systemic disease’ characterised by neuro-immune abnormalities causing patients to be severely intolerant to exertion. Other studies have shown abnormalities in cellular metabolism, gut bacteria and gene expression in some patients. The ME Association’s Christmas Appeal is raising funds to analyse 300 blood samples from a CFS/ME biobank, looking at metabolomics – chemical clues that are left behind after changes in cells – picking up on research from the University of California which suggested that CFS/ME could be the body going into a state of semi-hibernation. Many other examples of innovative research were presented at the recent International Association for CFS/ME conference in Fort Lauderdale, with chronic inflammation a recurring theme. But even the hard core researchers admit it could be years before we have definitive tests and effective drug treatments. Funding for further trials is needed.

The challenge in the meantime is how to help the 250,000 CFS/ME patients in the UK who need it now. Non pharmacological approaches to CFS/ME include trying to establish a regular sleep pattern and to manage activity levels to avoid booming and busting, and the horrible payback of post exertional malaise. This can be hard to do, but in MD’s experience many young people who have recovered enough to engage in a managed activity programme do very well, probably because stabilising sleep and managing activity levels effect metabolism and hormone levels, such as cortisol. CBT can help establish these recovery routines and manage anxiety but isn’t itself a cure. Many recover in time, by gradually increasing activities when they feel able. Some get recurrences.

Other patients are simply unable to increase activity and exercise levels, and some are made worse by trying. All interventions – drug or non-drug – can cause harm as well as benefit, and there are a significant number of patients with severe CFS/ME who are not helped by any current interventions. Research needs to focus on those most severely affected, and we all need to focus on believing in ME. It is a proven and classified neuro-immune disorder, from which some people recover and some don’t. Yet. You can donate to the ME Association Christmas Appeal at www.meassociation.org.uk

NHS Underspending Part 94

The current row between the Health Select Committee and the government about how much is spent on health in England is nothing new, and neither is the lie that it will increase by £10 billion in this spending round. Health spending is roughly equivalent to the Department of Health’s budget, which was £116.5 billion in 2015/16. It will rise to £121 billion by 2020/21, and increase of £4.5 billion after inflation.  Within this budget, the government currently gives just over £101 billion to NHS England, (NHSE) which oversees the vast majority of health pending. The NHSE budget is set to rise by about £7.5 billion by 2020/21.  This means there has been a £3 billion cut in other health spending outside NHSE, on services such as public health, education and training. The bulk of the transfer to NHSE is happening in the first few years of the parliament, so funding may actually decrease after 2018.

And it gets worse. The rise in NHS costs every year, for things like drugs and staff pay, also tends to be higher that inflation generally, and the extra import costs due to the falling pound post Brexit will make another big dent in any increase. The King’s Fund calculates the overall real increase by 2020/21 could be just £1.5 billion if estimates of “the NHS-specific measure of inflation” turn out to be correct. The health analyst Roy Lilley estimates the increase could end up at just as £800 million.

The “£10 billion increase” in health spending the government keeps parroting is just in the NHSE budget, and over a longer time period, counting back from 2014/15. The government has cleverly redefined health spending as ‘NHS England spending’ in order to hide the £3 billion cuts in public health, education and training. Given that the Five Year Forward View devised by NHS England chief executive Simon Stevens relies heavily on better public health and training, the government’s claim that the £10 billion Stevens asked for to accompany the plan has been ‘delivered in full’ is nonsense.

Sadly, many of the assumptions in Stevens’ own plan were also nonsense, most notably that the NHS could make £22 billion in efficiency savings by 2020 despite rising demand year on year from a growing population, an increasing number of elderly patients, advances in technology and um, poor public health. Austerity is strongly linked with mental illness, and mental illness is itself a high risk factor for physical illnesses caused by smoking, alcohol and poor diet. So large cuts in the public health budget could be suicidal for the NHS. The childhood obesity strategy has been an early victim.

In essence the NHS is not overspent, it is underfunded for the work it is obliged to do to provide a universal, safe, high quality service. This gap between funding and demand (which increases between 4 and 6% year on year) has been calculated by numerous bodies to be £30 billion by 2020/21, hence the current need for £20 billion plus savings. The hope is that Sustainability and Transformation Plans (STPs), which have been developed for every region in England in secret, so as not to frighten the press and public about the extent of cuts and closures needed, hope to deliver better, cheaper care by transferring far more patients from expensive hospitals into community care using private providers. But the huge cuts in adult social care budgets make this highly unlikely to succeed on a large enough scale to make the savings required. In 2015/2016, the NHS in England had a funding gap of £3.7 billion, so STPs would have to be accompanied by a miracle to turn it into £22 billion savings.

Add in the 50,000 NHS clinical staff vacancies, work related stress, poor morale and the insecurity felt by vital oversees workers, and the NHS is set for a spectacular crash. Not that Jeremy Hunt and Theresa May seem too bothered. Privatisation of the health service is well advanced and unstoppable without an NHS Reinstatement Bill. Having a cheaper service (especially cutting expensive staff costs including doctors) will expedite this further. Brexit may lead to a contraction in GDP and the public will be poorer and reluctant to pay more in taxes for health. May will not go as far as advocating an insurance based system for all, but just leave those who can afford it to take out their own private insurance as the public service around them crumbles. Alas, there are no private emergency departments and few private GP services. The NHS is crucial to the economy, not a drain on it. If the government abandons the NHS as a threadbare service for the poor, we will all be the poorer for it.

Clear as Day

Now that health secretary Jeremy Hunt has ‘won’ his battle to impose a new contract on junior doctors that they believe cannot be safely staffed, it is vital that junior doctors have robust whistle-blower protection so they can raise concerns about patient safety without fear of reprisal. Under the umbrella of their union, the BMA, junior doctors felt safe to speak up en masse, but now the BMA is in retreat, it will be left to brave individual doctors to fight their corner on behalf of patients.

Undoubtedly one of the bravest is Dr Chris Day, who unearthed the scandal that 54,000 NHS doctors in training appear not to have any whistleblowing protection if they dare to speak up and are punished as a result. In 2014, Dr Day was working on the Intensive Care Unit at Queen Elizabeth hospital in Woolwich which at night routinely did not adhere to national staffing levels as defined in ICU Core Standards, putting patients at risk and placing huge stresses on the competent and dedicated staff. The Trust has accepted that a protected disclosure about safety and staffing was made to it on the night of 10 January 2014, but Dr Day refused move onto the next job in his training program until allegations about him, and the patient safety concerns he had highlighted, had been properly investigated. As a result, his training number was withdrawn by HEE and his career path to consultant was stalled.

In pursuing an employment tribunal claim against Health Education England (HEE) and Lewisham and Greenwich NHS Trust, Dr Day discovered how easily doctors in training could be argued out of whistleblowing protection and denied a proper investigation of the facts of their case. Whistle-blowing law is currently only located within employment statute, and so only provides protection from detriment carried out by employers. And yet legal responsibility for the employment status of junior doctors is a complex and arguable game of pass the buck. A Trust can be seen to employ a trainee doctor at any one point in time, but it is the local Deanery under the auspices of Health Education England that is the body responsible for his or her training and, ultimately, career progress.

It is the Deaneries and HEE who recruit doctors in training, supplying them to various Trusts, and monitoring the terms of engagement via an appraisal or ARCP process. It was HEE who threatened Trusts that they would not provide trainee doctors if they did not impose Hunt’s new contract, and so clearly should be held accountable in employment law. Dr Day and his legal team argue that the Deaneries and HEE are in fact acting as an employment agency for the purposes of Section 43K(1) (a) and (2) of the Employment Rights Act. It follows that Deaneries are employing doctors for the duration of their training programs for the purposes of whistle-blowing protection.

On 19 November 2014, Jeremy Hunt promised a “comprehensive response” regarding Dr Day’s whistleblowing case. On 8 December 2014, he changed his mind and proceeded to deny all legal responsibility for the case and for Health Education England, citing the Care Act 2014. Hunt further stated in his legal papers that he has “no knowledge of the facts in this matter and holds no documentation.” At his preliminary hearing on 25 February 2015, Dr Day – and 54,000 other doctors by implication – were argued out of the right to have whistle-blowing protection. Instead of fighting the case on the facts, the NHS, the Deanery/HEE and Hunt instructed four separate law firms to argue that none of them could be held legally responsible for the situation or Dr Day’s future employment, and an unfair dismissal claim was impossible. Two weeks later, Hunt made an order to grant statutory whistle-blowing protection to student nurses, but not doctors in training.

Dr Day won leave to appeal the preliminary judgement in August 2015, after Mr Recorder Luba QC observed: “there would appear to be a lacuna in respect of the ability of a junior doctor to complain of detrimental treatment on account of a protected disclosure at the hands of the body responsible for his or her training and, ultimately career progress.” The Court of Appeal deemed his case to be ‘clearly arguable’ and ‘a matter of some importance.’ You would imagine the BMA would support Dr Day to the hilt, to fight for whistle-blowing protection for all doctors in training, but shamefully it isn’t. It initially supported the case but 5 working days before the claim had to be submitted it withdrew all legal help, leaving Dr Day, who has a young family to support, to crowdsource funding alone. MD resigned from the BMA over its treatment of whistle-blower Ed Jesudason, who it is still suing (Eyes passim). You can support Dr Day’s appeal at www.crowdjustice.co.uk/case/junior-doctors/

Command and Control

As the son of a Royal Naval commander, Jeremy Hunt was never going to be shy about commanding the NHS. In four years, he has become possibly the most controlling health secretary the NHS has endured. He picked and ‘won’ an entirely avoidably battle with junior doctors by persistently threatening to impose a new contract on them and then arguing in court that imposition was never his intention. The new contract is not being imposed, it is merely the only one being offered. In his conference speech, he pleaded with junior doctors ‘let’s not argue about statistics’ – or rather, who needs science when you can force changes through with ideology? Hunt has at least noted that Britain has fewer doctors per head of the population than 23 of its European neighbours, with gaps in rotas a persistent safety concern. Hunt’s antics may have driven some doctors out of the NHS, so now he is commanding his way out of trouble.

Hunt’s conference announcement to increase the number of doctors in training by ‘up to 1500 a year by 2018’ is welcome, but he didn’t say how it will be funded. The first batch won’t graduate until 2023/24, and won’t apparently be able to leave for 4 years unless they pay back their training costs. A bigger issue for workforce planners is that many doctors– both male and female – choose only to work part time in the NHS because the full-time workload is too unsafe and stressful. So a 25% increase in doctors in training may have much less impact than hoped, especially if some of the 25% of NHS doctors currently come from overseas leave, or a forced to leave, post-Brexit.

NHS nursing shortages are even more acute – there were 30,000 advertised nursing vacancies in January to March, compared to 9,000 medical vacancies. The government has removed the cap on nursing places but scrapped nursing bursaries, and Trusts are under such pressure to balance the books, safe staffing guidance has been buried and nurses are still having to care for far more patients than it is safe to do so. Irrespective of how many staff you train, you can only retain them is they feel supported, motivated and safe. No-one goes to work in the NHS expecting it to be easy, but the NHS has the highest levels of work related stress, staff illness, bullying and discrimination of any organisation in the UK. 26.8% of NHS staff have significant anxiety and stress – 50% higher than in the general population. And long-term, unremitting stress causes illness and even premature death.

Chronic staff shortages are driving the centralisation of services to fewer sites, with widespread unit and even hospital closures planned. The public will have little say in it all. Sustainability and Transformation Plans (STPs) have been developed with no public consultation for most NHS regions, along with 2 year planning guidance from NHS England with tough financial restrictions and a host of ‘system control totals, STP-level assurance and performance metrics and a strengthened STP wide risk pool.’ Very few doctors understand the jargon, never mind patients, but in essence NHS England chief executive Simon Stevens and Hunt are doing a strategic dance of death around the NHS debt to see who gets blamed if parts of the service collapse. Expect a lot of mergers, chains, federations and more desperate pleas to the private sector to step in and ‘outsource’ NHS services. Staff are generally not consulted in the process, merely told that their jobs and pensions have been outsourced.

And then there are the regulators. The Care Quality Commission and NHS Improvement expect excellence and efficiency in a service where demand grows by 4-6% each year but funding increases are a mere fraction of this. The burden of inspection is growing, and almost impossible for small practices. Spare a thought for Dr David Zigmond, a single handed GP in Bermondsey with an unblemished 40 year career, cared for and happy staff and patients and no serious complaints. In 2014 he had a very satisfactory CQC inspection but the bureaucratic requirements of his 2016 inspection were so great, he decided to be a conscientious objector and refused to comply with what he saw as a draconian, exhausting, industrialised tick-box process. Having got red crosses in nearly every CQC column, his practice was promptly closed down by NHS England. And yet having spoken to him at length, Dr Zigmond is just the thoughtful, insightful, rebellious and humorous GP MD would want for himself. Too much ‘clinical freedom’ can breed dangerous doctors, but too much command and control kills the spirit of rebellion. We should be grateful for junior doctors and Dr Zigmond.