Sarcoma, COVID, science, BREXIT and Trump – what a year

I have not written in this blog since January of 2020. It has been some year and while I have been busy, the COVID-19 tragedy has been unfolding and our government has been deepening its self-created chaos around Brexit. Meanwhile the politics of the world have been changing. It is impossible to disentangle it all but I will have a go at summarising the year.

I have been busy because the world of sarcoma and canecr advocacy more generally doesn’t substantially change despite the pandemic. With sarcoma we have a disease which is rare, heterogenous (about 150 different histologies), and inherently complex. It is difficult to diagnose, requires specialist knowledge to treat and effective medical treatment options are scarce. There is limited access to research for patients and many studies of new treatments fail. Effective patient advocacy to help create change is desperately needed around the world but is largely unfunded. My life in the last four years has been about travelling Europe for meetings and events. That shuddered dramatically to a halt in March. I have not missed airports, life has been interesting on Zoom and Teams but I have missed the conversations over coffee or lunch.

The COVID-19 pandemic has been tragic. Our government has consistently acted too late at the cost of lives, it has splashed money into the hands of incompetents and crooks (known as friends), ignored existing skills in the community (to benefit its friends), and its leader has lied, bumbled and blustered throughout. Ministers have ignored the importance of giving the public ‘understanding’ and relied on them to try to process information for themselves. Giving clear and simple explanations is not patronising, giving simplistic ones is. What we needed was the advice to avoid closed unventilated space, avoid crowds, avoid close conversation – instead we were told to wash our hands, wear a mask, and keep 2m away from others. One is about contexts of life and prevention and is simple. The other is about self-protection without any reason or context and is simplistic. No wonder you got crowds, people gathering indoors and politicians having unmasked close chats. In addition there has been an almost pathological addiction to big populist promises that cannot be kept, not least is the world-class test and trace disaster.

What stems from this could be an exciting opportunity for science, which has seen itself in the headlines more than ever before. The politicians mantra of “following the science” (which it soon became obvious that they weren’t) subtly morphed into “being advised by the science” (which allowed them to openly ignore it). Fortunately we do have a lot of honest scientists who will not be over-awed or bullied and who can communicate effectively. If we are lucky the demonstrations of the influence science can have should excite more young people.

The treachery of Brexit has also been a huge collection of extended promises. Lies built upon lies, reality ignored, vain hopes sold to the electorate which then evaporated, ideas of quick agreement became extended negotiations, irrational short term solutions disappeared as the real world emerged – it was predictable. The extended promises of 2016 were unfounded and sadly those who manufactured those lies came into power determined to deliver their desired outcome without any of the benefits they had similarly promised and causing a level of damage not done to the British economy and social-life since the 1940s. A Cabinet of self-serving Westminster cowboys, yes-men too lily-livered to stand up to bullying and admit to what was right. And now they are threatening to use gunboats in the English Channel!

Deepening the tragedy on the world stage has been the pantomime dame of American politics. The cringing performances of a coiffed man with a 10-year old’s vocabulary, the emotional sensitivity of a steam hammer and a view of the world that comes from one of those crazy mirror stalls at a funfair, moved us beyond laughter, to tears, to sending condolences to American friends. Welcome to the new 80-year old king, he will need to show steel to steal the show as the next act unfolds.

Oh dear, what a year. Well that’s it, I’ve had my say.

New Year Resolutions in this post truth world

In this post-truth world public figures have a tendency to talking solutions rather than rationally discussing the nature of a problem and reviewing the evidence which identifies it. The temptation to lie to support their case is emphasised. Just as important is their ability to deny expert evidence and call someone who is taking them to task a liar.

Extremist thinking leads to extreme expressions and extreme behaviour, well evidenced by the EU referendum campaign and the Trump presidential campaign in 2016. British politics is culturally unable to call a blatant lie a lie, partly because of a parliamentary convention aimed at avoiding extreme behaviour. There are no such constraints in the USA and their recent election campaign was the worse for it. Neither situation is desirable.

The Leave campaigners offered a simplistic solution to a complex problem, turned it into a populist mantra, and lied to achieve their objective. They had no plans on how to deliver a practical solution. Donald Trump identifies problems and talks solutions, but when he chooses a problem he fails to consider contexts and dismisses any evidence which either supports or denies the solution he has chosen.

The UK is the worse off for Brexit, the USA will be the worse off for Trumpism. It appears that Theresa May is being very level-headed, aiming to mitigate the damage caused by lies. We must hope that level-headed Americans will surround Trump and deliver rational policies.

In politics of course no-one ever makes a mistake. This extreme solutionism supported by self-justification based on level of volume, is a ‘movement’ or a ‘style’. Sadly it is being reflected in other areas of public life too.

In religion simplistic extreme approaches affect both Islam and Christianity. The jihadist view is based on selective literalism, they shout loud, put down co-religionists who disagree, and are violent. There are Christians who are just as selective and as literal, though not with the same violent intent. They can however use violent language to attempt to diminish other Christians who have a more considered faith.

Fortunately we do not often see this kind of behaviour in medicine, the denial of the MMR vaccine was perhaps the biggest example. There are some unsettling undertones in US based email lists where patients get advice, sometimes quite extraordinary, and viewpoints can get very vocal support. The hyping of drugs, manipulating media ‘experts’ and patient interest groups, and setting exploitative drug prices is all slowly being brought under control. However generally it is a area where evidence rules, and good science is appreciated.

The lessons of the medical world should be carried into political life. I would suggest for our politicians some New Year Resolutions, built on the medical research world.

Construct your argument rationally, without emotion, seek and recognise good quality evidence.

When you use evidence pay proper regard to the conclusions the researchers arrived at.

Don’t assume that someone with a view which opposes yours is stupid or telling a lie.

Don’t assume that an expert has an interest in denying a cause just because his evidence does not support it.

If there is a lie, and the evidence shows it to be one, say so.

Dying your way – support the Assisted Dying (No2) Bill

An important moment is coming and everyone needs to think quite hard about it. In just over two weeks time the Assisted Dying (No2) Bill is to have its Second Reading in the House of Commons.

The Bill aims to make medically assisted suicide legal in the UK.

This Bill was originally introduced in the House of Lords by Lord Falconer but it lapsed when Parliament was dissolved for the General Election. It is being revived by Mr Rob Marris MP, who won the lottery for Private Members Bills in the new House of Commons.

The Bill has been very carefully framed and negotiated. Remember that Lord Falconer is a lawyer and former Lord Chancellor. In the Lords there was quite strongly felt debate. It lasted over 9 hours, there were over 100 speakers and two attempts to amend it to worthlessness were resisted, being out-voted by quite substantial margins. It was passed by a majority of two-thirds of those voting.

The Bill is a simple piece of legislation. It has very clear safeguards to prevent misuse of the new provisions. The fear that some elderly people may be exploited and bullied into assisted suicide has been addressed very carefully. Every written application has to be approved by the High Court. Doctors are not obliged to help a patient even to make an application and at every step the patient has the absolute right of withdrawal. Someone seeking to use this as a route to bump off a relative opens the way to life imprisonment.

The Bill’s first real test comes in the House of Commons on Friday 11th September. There will be a debate and a vote. There will, no doubt, be some opposed to the Bill.

There are many cancer patients who would like to see the Bill enacted and to have the option of dying at a time of their own choice. Dying from cancer rarely has much dignity. Even when at home and properly supported by medical and caring staff, extremes of medication are often necessary to control pain and other symptoms. The new NICE Guidance on end-of-life care is explicit about what symptoms might be experienced. It details treatment for agitation, anxiety, breathlessness, nausea and vomiting, “noisy respiratory secretions” and pain. It is not a menu, a list of options from which you make a choice. You might suffer all of them. You will not be in control.

If you would like to see this Bill take its next step through the House of Commons and, hopefully, make its way through Parliament to reach Royal Assent, write to your MP and ask him to join those who will support Rob Marris on September 11th by voting in favour of the Assisted Dying (No2) Bill.

The tireless demands we make of God.

Listening to a memorial service broadcast on radio it occurred to me how many demands we make on God. If we cut out the music, readings and eulogies the service was all about asking God for his mercy, compassion etc for those who had died and those who mourned. But God did not get a word in.

How often do we sit and listen to God? Do we ever sit and listen?
The readings help a bit – some previous wisdom gives us something to think on. But these are readings chosen by men from the writings of men. Do we doubt God so much that we have to fill the silence with our requests? Don’t get me wrong, I am not saying we shouldn’t make requests, I am seeking connections with God, indeed a relationship with God and one thing we learn very early in our life about relationships is that two-way communication is essential. Those who don’t stop talking often have hearing problems and use talking to mask their disability.

Viewed this way the memorial service was very worthy, caring for members of our society is important, but it was communication in one direction only. The suspicion is that everyone involved was deaf. God didn’t get a word in. The next question is, of course, did he hear the pleas, and did he try to respond? How do we know if he tried?

The truth is he might not have done. God didn’t get a word in; maybe he knew no-one would be listening. Faced with an unrelenting barrage of requests I think I would have gone for a cup of tea and waited for the noise to die down. That of course is the big mistake. I should not presume that God might act like a human. We make God in our own image far too often. Historically man’s books of religion tell us that his attributes are human and his behaviour human. It’s not like that at all.

Many attending that service or listening on the radio will have felt a tug at their emotions, have recalled their love for one departed, been distracted by a random thought, have reached a conclusion to some problem, or modified a firmly held belief during that service. It is that kind of way in which we hear God. He calls on our spirit, not on our ear drums. The hope is that through the music and the emotional involvement our spirit will open up and the peace of God will visit, will linger and hopefully create a lasting relationship.

The rod and staff

Being diagnosed with a potentially terminal illness is a shock. Education does not prepare us and culturally it is not a conversation topic. The message can come when you least expect it, sometimes at an age when lifestyle changes are bringing a whole new vista of life’s opportunity into focus.

This situation is a huge challenge over and above the physical demands which come with treatment, or with deteriorating health. This is the valley of the shadow of death, so poetically defined by the writer of the 23rd Psalm – the poem of praise and of comfort made more familiar by the much-loved hymn ‘The Lord is my Shepherd’.

Psalm 23 has a particular resonance as a focus for mindfulness and meditation. You find words of comfort that go far deeper than you might expect. There is a call to your spirit which is conjured up by the images the writer’s words describe. Familiar pictures offer themselves to those who are distressed and upset, firstly as reassurance and then as spiritual comfort.

Increasingly healthcare professionals recognise that physical and spiritual co-exist and comfort can be gained from words. By reaching out to your mind the spiritual can be brought into play. This is not a new idea but it is not always one we think of first when health problems arise. In cancer care the value of spiritual wellbeing has long been recognised though how to support it remains a question.

The psalm assumes our natural goodness. Just reaching out to the shepherd is enough to start the process of healing and help.  There is just the one condition. You can only get help by reaching out to the shepherd with your heart and in your mind. This opens the way to the comforts of green pastures, still waters and the support from the rod and staff. It translates into spiritual strength.

But this is no shepherd carrying a brand or badge which denotes a specific religion. This is the spiritual shepherd of all mankind. The route by which the shepherd is reached can be religious but it can also be a route travelled alone, even in anxiety and fear. There is the certainty in the Psalm “Yea, though I walk through the valley of the shadow of death,
 I will fear no evil;
 for You are with me”.

Reviewing the Evidence

A great part of our life is governed by evidence – we look and listen for evidence of danger when starting to cross the road. In particular areas such as health care, evidence tells us what has benefited patients and what has not.

Can we take an evidence-based approach when we consider religion? Many people would say that the evidence for God is in the Bible. But is the Bible really evidence? It is after all a lot of anecdotes quite often without any cross-references which might help confirm what is put forward as fact. For some this may be enough but the decline of church attendance suggests that for many it is not. The standards which one would apply to assessing the Bible as evidence would be completely inapplicable if we were looking at healthcare. In healthcare there need to be undeniable facts supported by measurable data. So is there a better way to go about looking for evidence which supports the exercise of faith?

Those with a strong faith may be horrified by taking a modern approach allied to science to this question. Is such an approach appropriate? I think it is. It is perhaps surprising to find that there are many scientists who have a faith. It isn’t rooted in their science. It is rooted more than anything in their understanding of life, and their awareness that there is something deep in humanity which cannot be readily explained.

It is not about language, family or society. It is not measurable. It is a different kind of evidence. Some would identify it as the core of our humanity. It is about the spiritual love of human kind which we all know about. Something taught by Jesus and all the great prophets of religion. It is something which takes you into the deeper connections of humanity.

This brings science and faith together in love. It is personally spiritual and intellectually mysterious. It is also quite exciting. Acceptance of this is a process which is both emotional and scientific. The evidence is personal, unique to each of us. Once understood like this it is with us everyday in everything we do; the eternal mystery of unconstrained love, striking the chords which are the music of faith.

First published in Stretton Focus, November 2014