No Cause For Celebration
Attending The Christie for my biannual
checkup, two years after I completed radiotherapy, should have been cause for
celebration. My PSA reading was at the lowest level since measurements began
and, beyond that, this should have been indicative of the successful treatment
of prostate cancer.
However, the hospital environment,
with its various interactions with medical personnel, has a way of
depersonalising you into a statistic, a chess pawn being advanced to the next
position.
What I did not expect was to be moved,
without warning and without my consent, onto an entirely different footing.
Self-management was offered as empowerment, when it reads much more like a
cost-shifting exercise. I left feeling dispossessed of both agency and
personhood.
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| An AI-generated infographic on the blog content. (Click to enlarge.) |
A City In Gridlock
First of all, Manchester is in some
sort of transport gridlock. Just as maintenance and repairs were being
conducted on the tramlines from the city centre to the west, a water main
burst close to the exit of the central bus interchange, leading to diversions
and chaos.
I had planned on taking the bus to the
hospital, but plumped for an Uber, which was charging twice the usual fare.
At the hospital, patients can check in
on terminals in the department they are visiting. Mine could not be found, so
it took a receptionist tapping away at her keyboard, grimacing, then shuffling
papers and finally making a call to determine which waiting area I needed.
Shuffled Through The System
Soon, a nurse called out my name,
mangled in ways barely forgivable, introduced herself and ushered me into a
treatment room. We talked about my results, some lingering side effects, and a
possible referral for other, more intimate things.
It is worth saying that in two years
of follow-up I have not seen a consultant. The assessments have been conducted
by urology nurses reviewing my PSA results and my continuing side effects, then
offering recommendations or referrals to deal with post-treatment issues.
She gathered up her sheaves of paper
and said another nurse would come in to chat to me, adding something to the
effect that, after two years of monitoring and in-person consultations, the
regularity of the checks might change. Little did I know this was The Christie
disengaging from me and discharging me into another process.
Thanked For Joining
This other nurse came in with an
envelope, a form, and a pamphlet. After introductions, she started by thanking
me for agreeing to join the programme. I was unsure of what I had joined, as I
was literally blindsided and stunned at what had just happened.
I was being handed over to The
Christie Prostate Easy Access Support Service (PEASS), where from now on I
should arrange to have my PSA tests taken every six months. The approach is
entirely hands-off, except when I call or when they need to discuss my results.
I was told I might receive a
notification two weeks before the assessment is due. On the form, the words
"We will not ring you unless we need to discuss your result" are
highlighted in yellow, even though the font is already bold. Emphasised twice,
lest there be any doubt about where the responsibility now sits.
Consent Assumed, Not Given
Then there was the easy conversation
of the lady who talks nicely in the guise of being helpful, without any kind of
intrusion; the deft kind of patronisation I both felt and read as it was
happening.
At no point was I offered the choice
of remaining on consultant-led follow-up, nor was I told what the alternatives
were. I was told what was going to happen. Consent was assumed and implied,
rather than given.
It harks back to being put on a cancer
register at diagnosis, again without my agreement or my consent. I had no
knowledge of whatever policy this sits within, and that is rather the point;
this is my personal experience and how it felt to me, which makes it a valid
concern rather than a grumble.
The Pamphlet Problem
The livery of the pamphlet had all the
appearances of documentation by Macmillan Cancer
Support, even if The Christie was plastered all over it. More to read, less
to be addressed, as it exploits patient lethargy to the point of missing the
important stuff.
By lethargy, I mean patients getting
fed up of reading documents that seem almost designed to dissuade you from
finding the real support you need. Much of this should be happening in
conversation when you meet your medical support personnel.
Advice That Actually Helped
I say this because the best cancer
support advice I got was from the Cancer Support Nurse Consultant who with the
Employee Assistance Programme offered by my employer. She apprised me of the
essential things: the medication to manage prostate issues, the RADAR key, and
the Just Can't Wait card.
Take Tamsulosin. It could have been
prescribed as soon as I started radiotherapy, yet it was my EAP support who
recommended I ask for it, even though my consultants were already aware of the
irritation and the pain. It was as if nothing would have been done and I would
have been left to endure, had I not had other information with which to
highlight the problem and request treatment for the side effects.
You would have thought The Christie or
Macmillan would have this information readily available to disseminate, but
what you end up with is another version of the Women's Institute catering for
cancer. Meeting for a cup of tea and biscuits, lots of talk and supposed peer
support, without essentially addressing critical need.
Not Made For Kumbaya
I guess it works for many, but I have
been unable to appreciate the benefits. Invariably, once I find the engagement
generalised rather than particular to my needs, I withdraw into my own shell;
every need, when assessed properly, is both individual and unique. I'm not made
for the Kumbaya hand-holding stuff.
As I returned home, I went straight to
bed and slept for hours. The kind of sleep that tends to quell a sense of
discomfiture and discombobulation.
A Better Handover
Change is never easy, but there have
to be better ways of introducing a change of process, assessment, and
monitoring. State clearly what is happening. Explain why the monitoring regime
is changing and what the handover entails. Establish, explicitly, that the
patient has understood what is happening. Seek their consent. Then, and only
then, hand them over to the new programme.
None of that is onerous, and none of
it costs more than the few minutes it takes to treat someone as a participant
rather than a case to be moved along. In my view, I was quite poorly served.
Related Blogs
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Blog - Men's things - Prostate Cancer blogs
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