Healthcare Law and Ethics and the Challenges of Public Policy Making

Selected Essays

Ian Kennedy

• Publisher: Hart Publishing
• Year: 2021
• ISBN:
  9781509950454
• Edition: 1
• Topic: Law
• Subtopic: Medical Law
• Index: Law

Drawing on Sir Ian Kennedy's extensive experience in healthcare law, ethics and public policy-making, this book explores vital issues in the law surrounding healthcare and regulation. The book contains a range of published and unpublished essays and speeches with the addition of notes and commentaries by the author that bring the pieces up to the present day. Those who want to understand developments, from transplants to confidentiality, from COVID-19 to public inquiries to regulation will find a rich seam of rigorous, informed analysis. The author's unique range of experience allows him to share insights on a variety of issues; from the conduct of the disgraced breast surgeon, Ian Paterson, to research at Porton Down, to the economics of innovation in drug development at NICE. His abiding interest in the welfare of children informs his trenchant forensic examination of how children fare in the NHS. Those involved in or with an interest in law, moral philosophy, and public policy will find much food for thought.

PART I

Children

I have never got used to the way in which, as a nation, we treat our children. I have never ceased to be both amazed and depressed. A rich country with a health service which, on its face, is there to take care of us all, where children are concerned simply lets down far too many. Clichés abound – children are our tomorrow and so on. Yet go to the inner city housing estates or the rural towns and you’ll see the pinched faces of poverty and hardship. Tomorrow for them is where the next meal is coming from, where they can be safe when the next outbreak of fighting erupts, where they can get proper schooling, where the jobs will be.

For too many children and young people the story of the National Health Service is one of neglect. An NHS which should be concerned with promoting good health and preventing ill-health, particularly as regards children in their early years, concerns itself instead principally with responding to ill-health. It’s an illness service rather than a health service. If that were not bad enough, the NHS is regarded by those who operate it as if it were an island. It’s not an island. It’s part of a fabric of public services including social care and education which should be seamlessly conjoined to promote children’s welfare. In the case of those children who most need these services, so far from being seamless, the fabric is full of holes. Children routinely fall through the holes. They suffer as a consequence and our clichés betray us.

In what follows you will see the evidence and the arguments which support my anger. Yes, there are lots of children and young people who are well and well-looked after. But societies should be judged by their failures rather than just their successes. And in too many cases the NHS and the wider society fails too many children.

1

Caring about Children – Who Cares?¹

I spent my first four years sleeping in a hammock, slung between girders in the cellar of the house my parents rented, as the bombs fell. We were poor, not privileged. Life was tough, financially and emotionally. The constant fear of the bombs and for my father’s safety took its toll on everyone, especially my mother. But, growing up, I was lucky on two counts. I was clever, and the UK had just created its welfare state. I floated on the opportunities it gave me: all the way to university in London in the swinging 60s – the decade of sex, drugs and rock and roll; something, sadly, that no-one told me about at the time!

I was a serious young man. I had promised myself while still at school, that if I ever escaped the industrial wasteland of my childhood, I would not forget those who remained behind. If you have been poor, you never forget. It’s what you make of those memories that matters. That’s what I’m going to talk about. It’s for you to judge whether what I have to say helps you. And, I suppose that’s a clue. Wanting to help and a sense of duty were my parents’ gift (or curse) to me.

But, you might say, I’m a lawyer and I specialise in policy. So, how can I help? You might think, I’m about as much help as … (I’ll let you finish the sentence).

Well, stay a while ….

I trained as a lawyer, largely because I was no good at anything else. I soon became fascinated by the moral and legal challenges which run through health and healthcare. There was no subject called Medical or Health Law. I and a couple of others started it in the UK.

My background as a beneficiary of the UK’s welfare state caused me to focus on the public sector and the patient/citizen – not the private sector and the professional. My concern was with those who have been called the ‘descamisados’: those without a shirt on their backs.

And, it didn’t take long before I was drawn to the way my society and particularly the NHS dealt with children and young people. The ‘vulnerable’ they are called, although, of course, it is we who make them so. They are not necessarily vulnerable, if cared for and about. I saw it as a life’s work, a noble work, to draw on my own past, concentrate on the less well-off, and ask how we can do better for children.

When I gave BBC Radio’s Reith Lectures in 1980, entitled Unmasking Medicine, I dedicated one of the six lectures to the care and welfare of children. I called it ‘Suffer the Children …’. It seemed to me that we had got so much wrong in caring for children. Those from comfortable middle-class homes didn’t know about, nor care much about the welfare of the less well off, save when it came to buying their Christmas cards from a fashionable children’s charity, or talking of feral gangs loitering outside their favourite bistro. We had the highest child pedestrian accident rate in Europe because children had to play in the streets and cross busy roads to school – no nanny and no SUV for them. We had a food industry dedicated to ensuring that children became addicted to sugar. And the tobacco industry lurked to entrap the 12 and 13 year-old.

Not much has changed in the years since those lectures. The nannies are now Polish rather than French and the SUVs have better sound systems. But, for most children, their health and welfare and their access to healthcare in the UK is not much better.

Coca Cola and McDonalds turn our children into obese sugar junkies. The fashion industry peddles anorexia and cosmetic surgery. Alienation, poverty and cultural isolation breed anger, envy, and crime. Two nations of children exist occupying their separate worlds, barely intersecting: one nation fearing, the other resenting, what they see of the other. And the divide grows, whether it’s child mortality, exploitation by criminal gangs, teenage pregnancy, care of those with long-term needs, the disabled, or those with mental health problems.²

The proposed solutions to this state of affairs are as many as the explanations. To most, we are dealing with a wicked problem beyond real solution. Hasn’t the world always been this way? Children have always been on the losing side.

This is too pessimistic. Realising that there is no particular solution, or raft of solutions – that the magic wand school of policy never existed – doesn’t mean that there aren’t ways of improving things. I’m interested in government and public policy as one route to effecting change: in a welfare state (just about!) the role of the state is still important. It’s also important, of course, by default, by not acting, in those states where government chooses not to be engaged.

My starting position is that the state, my state, has failed many of our children, the descamisados, for many years, despite the aspirations of the welfare state and the good intentions of many. The rhetoric has often been heady. The reality has fallen significantly short. To the question – who cares, the answer would have to be, too few.

What to Do?

If I had my day and my way, I would focus my efforts on the culture in which we care for and about children. By culture, I mean what people and organisations believe and how they behave. The culture has to change to put the welfare of children at centre stage.

The following is my manifesto, based on my experience in the UK. It is for others to decide if anything I say strikes a chord for them in their various worlds.

Integrated Services for Children

•money – the money for the health and welfare of children, in all its forms, must be consolidated in one fund, not separated into silos marked education, health, social care, criminal justice and the like;

•responsibility – the responsibility for the money and how it should be allocated must rest with a Cabinet-rank Minister, as regards macro-allocation, and suitably qualified elected officials at a local level as regards local priorities and allocation;

•the hitherto competing claims of various sectors, or silos, of government must be recalibrated as complementary rather than competing. Children and their needs must be understood and responded to holistically. For example, schools must have the health and resilience of children as one of their objectives, just as social services must be engaged in education and mental health.

The Health, Welfare, and Healthcare of Children

•just as the various services provided by the state must be integrated to serve children effectively, so health services themselves must be integrated. The approach must be holistic. A parent should not have to traipse from pillar to post, trying to crack the system which is supposed to be caring for her child, telling the same story again and again to different professionals. This isn’t modern healthcare; it’s medieval. It happens every day!

•there must be agreed standards of performance in the care of children, developed by healthcare professionals in consultation with families and children;

•healthcare for children is Byzantine in its complexity. The parent or young person sees so many doors: go through the wrong one and you are lost;

•there must be networks of services, designed for children and beginning with a single point of contact, someone who can navigate a way for the parent or child to get what is needed, whether community care for the long-term disabled, maternity care, mental health care or whatever;

•there must be a significant focus on the early years of children from disadvantaged and poorer backgrounds: ‘disadvantage begins at birth and accumulates throughout life’.³ Apart from its being just and right to do so, the social benefit in the form of the integration of parents and children into society and the economic and social benefits that accrue is very considerable, as is the saving otherwise dissipated in social care and (often) the criminal justice system.

The Organisation of Services

•the financial incentives and rewards in the system for providing health and healthcare must be aligned with the holistic, integrated approach to services: perverse incentives must be driven out. Equally, the regulation of services and professionals must also reflect this approach;

•data about compliance with standards of performance and outcomes is at the heart of modern health and healthcare. It must be collected, analysed and routinely published as a mechanism for accountability and as a tool for improvement.

Professionals

•training in the care of children must be a prominent part of the training of healthcare professionals rather than, as now, a declining interest;

•training in collaborative working, working in teams, must be part of the training of all those who care for children: teachers should train with healthcare professionals, social workers, the police, and others, according to a common curriculum, to understand each other’s roles and responsibilities and to enable them to work together in the interest of children. Such training must also be designed to break down the tribal isolationism of healthcare professionals, as regards some other healthcare professionals and all non-healthcare professionals.

And, Three Final Things

•government and those designing services must reconnect with professionals of all stripes and types. Their commitment is too often taken for granted and their alienation can corrode the care that children receive;

•every aspect of services for children (and that’s every aspect) must be designed with the interest of child and parent in mind. ‘I exist to provide for you’ must replace the too common ‘I’m a professional: this is what I do’;

•leadership, leadership, leadership is at the heart of any regeneration of a system. It has never been more needed (and more lacking) in the NHS and more widely in government in my country. Without it, nothing is possible. With it, if not everything, lots is possible.

So, this is what I would do if I ever got my hands on the levers of power.

¹Unpublished paper written in February 2013 reflecting my continuing interest in the welfare of children.

²At the time of writing, the footballer Marcus Rashford’s campaign to ensure that children who need them should have access to free meals during school holidays was initially rejected by the government. Feeding children is parents’ responsibility, not the state’s, the Conservative government responded, overlooking inconvenient truths about poverty and unemployment. In the face of public uproar, the government backtracked. Rashford then pushed again. Again he was rebuffed. Again there was uproar. Again the government gave in. Rashford is a hero but his actions are no substitute for considered public policy, though they may be all there is in the present political context.

³M Marmot, The Social Determinants of Health, 2nd edn (Oxford: Oxford University Press, 2006).

2

Getting it Right for Children and Young People

Overcoming Cultural Barriers in the NHS So as to Meet Their Needs¹

Foreword

I began this review of children’s services in the NHS in the autumn of 2009. The sense was that the NHS was not performing as well as it could: that children and young people (and the reference to young people is very important) were not getting the best deal. Pockets of excellent practice exist, but they are just that. The sense is that they are islands in a sea of mediocrity, or worse.

I was asked to see if I could get to the bottom of why this might be the case. There was, for me, a certain poignancy in the request. For as long as I can remember, services for children have been described both as an important priority for the NHS and in the next breath as a ‘Cinderella’ service, save that this Cinderella has never got near to the ball. Nearly 30 years ago, I called one of my Reith Lectures² ‘Suffer the children’, in which I lamented the state of health and healthcare of children. Report after report over the decades have echoed the same message. In the public inquiry into paediatric cardiac surgery at Bristol Royal Infirmary,³ my colleagues and I urged improvements in children’s care. Now...