Professor Tony Pinching’s farewell message – from reMEmber’s September 2011 newsletter

By kind permission of reMEmber, we reproduce this message from Professor Pinching, who is retiring from the NHS this autumn. It is taken from the September 2011 edition of their monthly reMEmber magazine. www.remembercfs.org.uk

FAREWELL FROM PROFESSOR TONY PINCHING

So it is now time, as I retire, to bid you goodbye. By October, I shall have stopped clinical and academic work completely. The Beatles sang about my last birthday, so this is the usual time for transition, and being a clinical academic, I am stopping after academic year end. My career has been very fulfilling, but also very demanding – with far too little time and energy for my interests outside medicine and academic life. I encourage patients to look at work-life balance, so I thought that I should check it out myself! I have definitely done the work, but would like to do more “life” whilst I am able.

Over the years, my work has included: studies on how the brain processes the sense of smell (my first scientific paper was published 42 years ago!); studies on how myasthenia gravis – a different condition of weakness and fatiguability – is caused through autoimmunity, and how that changes the approach to treatment; understanding the nature and treatment of systemic vasculitis, in which there is inflammation of blood vessels, with widespread impact on body functions; understanding, diagnosing and treating different sorts of immune deficiency, congenital and acquired, including that induced by treatments; responding to the emergence of HIV and AIDS, as a new and very challenging immune deficiency, from the earliest years, clinically and scientifically, but also in public policy and public understanding; and, of course, clinical, scientific and policy work on CFS/ME. These last two areas have been the main focus of my career for nearly thirty years.

As a clinician and scientist, it has been an extraordinarily full and enriching career. I have learnt a lot about people, and about how things work (or don’t!). There remain many frustrations about what we still don’t know or can’t do. But I have tried to remain pragmatic and work with what we do know and can do, whilst trying to extend the boundaries. As a clinical scientist, I have always been nurtured, informed and inspired by my patients and what they tell me. I have tried to do my best to help, but I have been keenly aware in many respects how little that is for people facing the adversity of disease and its effect on their lives. I am sorry that I will at times have fallen well short of people’s reasonable expectations. But for some, I hope that I have been a useful “mountain guide” through the treacherous terrain of illness.

What will I miss? Above all, I shall miss my patients and the opportunity to work with them on their life’s journey, helping them to see how they can make sense of themselves and the world, as revealed by the unwelcome intrusion of disease. I shall miss that sense of extraordinary resilience that people can show in the face of adversity and loss, gaining fresh perspective and inner strength, whilst they make progress in whatever way is feasible, often supported by very special family or friends as carers. I shall miss many fine colleagues, whose guidance and support, professionally and personally, have made my work more effective and satisfying, not least because they are able to do many things that I can’t do. I shall also miss the many individuals and organisations – such as Janice Kent and ReMEmber – who make such a difference in supporting people affected by disease, whether as patients, carers, family or friends. Above all, I shall miss the whole challenge of clinical medicine, professionally and personally – most especially the privilege and responsibility of getting to know and care for someone at a most difficult time in their lives.

What won’t I miss?! Sadly, some of the social responses to illness and those affected – evident with both CFS/ME and HIV/AIDS – show some of the less appealing characteristics of humankind: wilful ignorance, prejudice, stigma, neglect and blame still add to the personal burden of disease, as if that wasn’t enough in itself. I also shall definitely not miss the conflicts of the ME field – often bitter, misjudged and personalised. Whilst I do understand something of why this terrible civil war is still being waged, I am profoundly disappointed by the inability or unwillingness of some of the key protagonists to move on. Some seem locked into disputes that are about past hurts and misunderstandings. I have seen at first hand how one’s views and statements can be deliberately misrepresented.

I will definitely not miss having to deal with the benefits system, with the terrible injustices and misrepresentations that I increasingly see visited upon the ill and disabled. The systems and some of the people who work in them have lost sight of why they are there – to help support those people in society who are vulnerable through illness. Sadly, as a result of political and media rhetoric, and misapplications of poorly thought through processes, everyone seems to be regarded as if they are trying to cheat the system. Self-evidently erroneous (eg judging by success at appeal) and often perverse decisions – about DLA and especially ESA – are being made, in which the accounts by the patient, their carers and clinicians are being ignored in favour of superficial, brief and formulaic “medical” assessments that seem determined to ignore the everyday realities that patients know. These cause unnecessary upset, exacerbate the impoverishing effect of illness, and often cause health setbacks.

So what am I going to do with my time and energy now? I plan to spend more time on music – playing (clarinet) and listening – and looking at ways in which music can enrich our lives, including continuing support for music therapy and starting some new projects with professional musicians. Having enjoyed working with a theatre company – Theatrescience (including plays on HIV/AIDS, CFS/ME and dementia), I shall continue to offer my guidance while it has any utility. I want to read more and do some more creative writing. I shall enjoy pottering in the garden and getting it into better order! I would like to travel too, as there are important places still to see. My children have all grown up into very interesting people, whom I want to be with some more, as well as three young grandchildren and wider family.

I do also wish to reflect on my extraordinarily diverse career and experiences, and see if there is something new to say, and write, about medicine and about being a doctor. I will still be a doctor, I just won’t be do-ing doctoring! I often remind patients that “we are human beings, not human doings!” – we can still be ourselves, even if the way we act may have to change as a result of changed circumstances.

As I bid you farewell, I am very conscious of the beautiful and heart-wrenching Farewell that Wotan sings to his favourite daughter Brunnhilde at the end of Wagner’s Die Walkure (The Valkyries), which I heard a few days ago at the St Endellion Festival. This might not be your cup of tea, but just imagine! It is full of profound love and pain, as well as regret about how some things came to be. As he is obliged to leave her on a rocky mountain-top, he surrounds her with a ring of fire – to protect her until the arrival of a true hero, who will rescue her.

So I say a fond farewell to you all, at least in a similar spirit, wishing that you and everyone affected by CFS/ME be surrounded by a metaphorical ring of fire that can protect you, until someone or something arrives to free you from the rocky place where you find yourself. Farewell!

reMEmber, the Chronic Fatigue Society, PO Box 1647, Hassocks, West Sussex BN6 9GQ. Tel: 01273 831733. Email: me_cfs@hotmail.com