Bloody Mess

When patients are seriously harmed by healthcare, they should be told the truth as soon as it is known, and compensated promptly for the degree of harm they have suffered, irrespective of the causes. Investigations need then to occur to try to ascertain the causes of the harm, whether anything could have been done to prevent the harm and whether individuals or institutions need to be held to account for any errors. Lessons need to be learned to prevent future harm. But patients need to be given the truth and financial support to allow them to live as best they can with the harm they have suffered.

The belated announcement of a public inquiry into the thousands of haemophilia patients given blood contaminated by HIV and hepatitis C in the 1970s and 1980s shows how far the NHS is from this ideal. Patients and relatives have been asking for this for nearly 30 years, and while at least 2,400 have died from their infections, many more have suffered not just from the unpleasant illness and treatment, but from a protracted, emotionally exhausting fight for truth, justice and compensation

Some of the haematologists and department of health officials at the time will have died (from natural causes), all will have retired and most will have given evidence at previous inquiries. The first blood clotting products (including factor VIII, which haemophiliacs need) were produced in 1966, and the UK imported huge quantities from the US from the 70’s onwards. In 1974, the World Health Organisation warned Britain not to import blood from countries with a high prevalence of hepatitis, such as the United States. It was also known in the 70’s that the risks of potential contamination were higher as ‘skid row’ donors were paid to donate (e.g. Word In Action, Blood Money 1975). Large quantities of factor VIII were also exported from high risk prison donors in America, using high risk collection techniques. Some blood products may also have come to the UK from high risk populations in Africa and Central America, such was the demand for factor VIII. In 1976, there was a drive to make the UK self-sufficient in blood products but this was not followed through. Doctors and department of health officials could not have known at the time about the emergence of HIV and hepatitis C, but they would have known that using imported blood was risky. However, they would have argued that there was at that time no alternative. And patients would have been kept in the dark.

I was at medical school in the eighties, and we often didn’t even tell patients their diagnosis. Seriously ill patients were fobbed off with paternalistic euphemisms, unilateral decisions were made not to resuscitate with no discussion and junior surgeons would do major operations for the first time, unsupervised, with their consultant not even in the hospital. The NHS survived on its threadbare funding through secrecy. Errors, risky behaviour and harm were routinely covered up. The secrecy surrounding the emerging tainted blood scandal was entirely consistent with the culture of the time.

In 1982, the first UK haemophilia patient was given a diagnosis of AIDS. In 1983, Dr N Galbraith of the Public Health Laboratory Service wrote to Dr Ian Field at the DH: “I have reviewed the literature and come to the conclusion that all blood products made from blood donated in the USA after 1978 should be withdrawn from use until the risk of AIDS transmission by these products has been clarified.” A DH letter the same month concludes that the suggestion “is premature in relation to the evidence and unbalanced in that it does not take into account the risks to haemophiliacs of withdrawing a major source of their factor VIII supplies.” No restrictions were placed on imported concentrates, except on those for children under the age of 4 years and for people with mild haemophilia. In 1991, as hepatitis C infection emerged, many patients were wrongly told it was ‘much less serious’ than hepatitis B. Potential risks were again downplayed. Many patients weren’t tested promptly for HIV or hep C. The public inquiry will doubtless hear from patients infected with tainted blood being wilfully mislead, not told their infection status or even offered compromise payments and gags not to pursue legal action. Whistle-blowers will have been ignored, as they are today.

Patients can’t be warned about the risks of infections that were yet to be discovered, but they have a right to know where their blood comes from and what the potential risks are. But informed consent didn’t exist 40 years ago. Even in the eighties, when the risks were known or suspected, patients were still kept in the dark. Merely arguing that the benefits outweigh the risks without sharing that information with patients is wrong, as is delaying compensation to patients in cases where blame is legally disputed. Harm is harm, and patients should be compensated for the extent of it, not the cause.

Assisted Dying (Part 2)

“There seems to me to be significantly more justification in assisting people to die if they have the prospect of living for many years a life that they regard as valueless, miserable and often painful, than if they have only a few months left to live.” So said Lord Neuberger in the Supreme Court in 2014. A 54 year old UK citizen called Omid T, who has an incurable but not terminal disease called Multiple System Atrophy, is currently challenging the law in the hope of being allowed to die.

Omid was born in Iran and came to the UK aged 12 in August 1975. He married in 1990, has three children and worked as a property developer until about 2008, when the first signs of MSA appeared. His speech became slurred and walking and writing got progressively harder. He is now largely confined to my bed with a urinary catheter and needing help with all his personal care. He separated from his wife in 2015 and doesn’t want his friends and family to see him suffering nor remember him as he is now. In 2015, he tried to end his life by taking an overdose. As Omid puts it; ‘I don’t have the ability to take my own life anymore and I don’t want to botch it up again anyway.’ But he does want to die, in a safe and painless way at home, and as soon as possible. If his slowly progressive illness were to run its course, he risks months or years of suffering and an unpleasant, undignified death – the thought of which causes him huge distress. And he gains no joy, value or purpose from his life.

In 2014, the Supreme Court ruled on a challenge by Paul Lamb and Jane Nicklinson, whose husband Tony was denied an assisted death, to the ban on assisted dying in England. The majority of the Court decided that while they did have the legal power to consider the ban, Parliament ‘should have the opportunity to consider the issue first’. Lord Falconer’s Assisted Dying Bill was defeated in the House of Lords in 2014. In September 2016, another Assisted dying Bill was defeated in the House of Commons by 338 votes to 118. A further Assisted Dying Bill is to be debated in the House of Lords but there is no date yet set for the second reading. Given either House’s reluctance to vote for assisted dying, it would appear Omid’s chances are slim. However, all of these Bills deal with those with a terminal illness and 6 months or less to live.  Omid’s life is likely to be shortened by his illness, but he is not terminally ill. He is of sound mind, living a very restricted and joyless life that he ascribes no value to, with no possibility of cure and the certainly of further grim deterioration over time. His legal case could be stronger, not weaker, than those with terminal illnesses.

MD’s gut feeling is to support assisted dying for both terminal illness, and incurable illness where the sufferer is of sound mind and clearly wants control of the means and timing of their death. However, any such law must also protect those with incurable diseases who wish to fight for every last breath. MD knows of one extraordinary man with Motor Neurone Disease whose entire day consists of getting dressed. The process takes hours, but he enjoys looking his best and being tilted up in his bed for a couple of hours before the lengthy process of undressing starts. Every day is near identical, and for many would be a living hell. But not for him. He refuses to give in to his illness.

There are clear legal safeguards that appear to be successful in other countries to protect the vulnerable and those who wish to fight to the finish. In the discussions MD has had with patients with incurable illnesses, many want a change in the law that allows them to die peacefully and painlessly at a time of their choosing, but a few express the concern that even with legal safeguards, they would ‘feel’ more vulnerable, as if they were expected to opt for a course of action that was now legal. Any change in the law would need to address these concerns. The most ‘way out’ public assisted dying campaigner – Australian Dr Philip Nitschke – believes that everyone over 50 of sound mind has the right to judge the merits and value of their life, and should have the right to a dignified assisted suicide at a time of their choosing. Would you feel more or less secure in such a society?

Omid’s case would allow proper scrutiny of evidence and experts from other countries where assisted dying is currently legal in clearly defined circumstances, and how the safeguards operate. In his situation, MD would probably want an assisted death too, but you can never be sure until you get there. You can support and follow Omid’s case at https://www.crowdjustice.com/case/dignified-death/

Hunt Rides Again (Again)

The parlous state of the NHS and social care came top, or nearly top, of many ‘voter issues’ polls but Theresa May has again decided on more of the same, reappointing Jeremy Hunt as health secretary to force through £22 billion efficiency savings while the Brexit chaos plays out. The NHS is currently 7 years into the most austere decade in its history. Demand rises at 4% per year and yet there is ‘negative real per capita growth’ (i.e. funding cuts) planned for 2018/19 and 2019/20. Cuts in adult social care have already left half a million fewer people with publicly funded social care now compared to five years ago, and many are having to use the NHS as a safety net. To balance the books, the NHS will simply have to provide less for less. Longer waiting times to see a GP and get hospital treatment, longer journey times as local services are closed and some treatments not available at all. And the levels of work-related stress amongst staff will simply keep rising.

The required £22 billion savings could come in part from selling off idle NHS buildings and land to property developers. Otherwise it’s down to Sustainability and Transformation Plans, many of which are looking about as sustainable as Theresa May. Ex Labour health secretary Patricia ‘Hire Me’ Hewitt – whose own austerity program helped sink Mid Staffs – is to chair Norfolk and Waveney sustainability and transformation partnership, ‘amid concerns about its progress and credibility.’ Meanwhile, the private outsourcing of community services continues apace in the hope that the likes of Virgin can run them more efficiently and safely (they can’t). The closing of local services means patients having to travel further, and the new Health Service Investigation Branch is looking at ‘systemic failings in NHS patient transfers’ following the death of a cardiac patient. The Royal College of Obstetrics and Gynaecology has an Each Baby Counts programme to reduce the 500-800 deaths each year caused by ‘something going wrong in labour.’ In 2015, 550 babies might have lived with better care, but only 34% of reviews into the deaths invited parents and families to be involved.

This pervading culture of secrecy and cover up is strongly illustrated by the long standing and deeply unethical behaviour of Birmingham breast surgeon Ian Paterson who – in full sight of colleagues, private and NHS employers, commissioners and regulators – went completely rogue with his cancer surgery, causing widespread harm and contributing to death where tumours were inadequately removed. Despite the horrors of Bristol, Shipman and Mid Staffs, Paterson proves once again how little the NHS has learned. Some staff did blow the whistle, many should have done more, but no one stepped in quickly to stop a narcissistic liar and bully who was clearly diverting wildly from the accepted guidelines for managing breast cancer. And this may not be an isolated example. A urologist who worked at the same trust (Heart of England Foundation Trust) is under investigation for off-piste prostate cancer treatment for hundreds of patients. Hunt has ordered an inquiry into Paterson which would normally be overseen by NHS England Medical Director Sir Bruce Keogh. However, Keogh’s wife Ann has been Director of Medical Safety at HEFT for a decade, and if will be interesting to hear if she tried to raise concerns with her husband, as well as her colleagues.

Given the scale of the avoidable harm and failure to act on it, the inquiry should be public, particularly given Jeremy Hunt’s promise of ‘no more NHS cover ups’ and to make the NHS ‘the safest and most compassionate health service in the world’. The roots of the scandal will be horribly familiar. Inadequate management trying to stay afloat in the face of prolonged underfunding, focusing on reducing the debt and pleasing the regulators and Treasury rather than investigating serious and obvious malpractice. There will be bullying of those who spoke up or refused to ‘fall into line’. Safety systems will have failed again. The regulators were complicit in failing to act. They had regular meetings with HEFT during Paterson’s worst excesses, but doubtless the focus was on finance with scant regard to quality of care. The GMC will pretend annual appraisal would have stopped him.

The NHS often delivers extraordinarily heroic and dedicated care, as the response to recent terror and fire atrocities illustrates. Trauma staff regularly work way beyond their paid hours. The NHS is woefully understaffed in many places and the government ducked out of mandatory safe staffing levels. The NHS in England is short of 30,000 nurses (10% of the total) and the 2016 staff survey found 47% of staff view current staffing levels as insufficient to allow them to do their job properly. Brexit has meant a 96% fall in EU nurse applications, and 150,000 EU NHS and social care staff still don’t know if they can stay. Vacancy rates for social care staff in the public sector are now 11%. Pay has been frozen at 1% for nine years. 50% of junior doctors are taking a break from specialist training after their foundation years. But Jeremy Hunt is still there with his smiley face and his shiny NHS badge promising us a kinder, safer fantasy for less money.