Thursday, September 8, 2011

Wishing Prof. Tony Pinching Well in Retirement!

Reproduced here with thanks and permission from
the reMEmber team, the now long established Sussex, SE-UK,
and well beyond, self-help, medical and political
campaigning support group, and pages 18-19 of their current September 2011 Journal.
 
"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 sence
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, I 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 improverishing 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 doing 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!

* * *
A reminder -- the first generation of us are approaching 30 years in the field, i.e., retirement age.  We're going to see a lot more of these, and a lot more obituaries, and can only hope that the younger generation will continue to step up to the plate to pick up where we left off.

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