Publicity of NHS breast cancer screening programme is unfairBMJ 2011; 342 doi: https://doi.org/10.1136/bmj.d791 (Published 08 February 2011) Cite this as: BMJ 2011;342:d791
All rapid responses
As a service user, I now know that overdiagnosis has been a problem
from the beginning. By the 90s it was obvious, and embarrassing to
screeners. Numerous independent studies over years have shown that this
harm is significant, whatever the disputed benefits. The NHSBSP has a
vested interest in keeping quiet about it, and brazenly admits in public
that they don't want women deterred from screening by being informed about
possible harm. They promised a new leaflet, and we got a mealy-mouthed rag
which fails to do the job, a job achieved quite adequately for men
considering the PSA test, where similar issues apply. They must be
behaving as they are because if the truth is revealed they will look so
very very bad. It is too late; they already do, and the longer they leave
it the worse it gets.
When through bitter experience I began to discover the reality of the
harms of screening, I wrote to my local Screening Service to tell them how
traumatized I was by discovering for myself answers to questions I had
asked practitioners, to which I had received selective answers, steering
my decisions and leading to my irreparable harm. I told them because I
thought they would want to know that the information they give is
misleading, causing huge distress when events transpire, so that they
could take action to remedy the matter, sparing other women the damage
done to me. They replied in platitudes, banalities, irrelevances,
misconstruals and nonsequiturs - a smokescreen of verbiage repudiating
responsibility for harm done. I wrote to the Hospital Trust and received a
similarly perfunctory reply. I formally complained. I took my complaint to
the PHSO. I formally complained to the NHSBSP. All respond in the same
insincere insulting way demonstrating no serious intention for change, and
no concern whatsoever at the traumatic distress caused to those who find
out the hard way what screeners know and withhold. I have written to
Andrew Lansley, and been fobbed off with pleasantries by an underling. I
have recently written to the National Screening Committee, responsible for
advising the government about the quality of screening programmes, but I
don't expect a reply saying, "Dear Mrs P, in light of screening facts, we
have decided to change the information given to clients, and to change
practice to ensure that before conducting screening all clients who wish
to go ahead are committed to the serious risks for the sake of the
benefits (if any)."
They have been able to carry on in this way for so long for two
reasons: first, because most women are still being told what is not true,
not just by the NHSBSP but by the health professionals who process them
with indecent haste through the system: that screening saves lives, saves
breasts, and that the treated are "lucky they caught it early". Second,
because they are answerable to nobody.
It is an outrage, an atrocity, a pogrom (definition: an organized
massacre of helpless people).
Competing interests: Diagnosed following screening
I received an invite for screening, with a leaflet, and knew of the
controversies. I emailed the service the next day as follows: "I have
received an appointment for screening on .... This email is to let you
know that I will not be attending this, or any other, appointment until
you have changed the 'The facts' leaflet. I would like to support those
who believe that this leaflet is misleading and does not clearly set out
both the risks and benefits of screening. Please leave me on your system
as this will keep me informed of the situation."
Later the same day (quite a coincidence) I was shocked to read this
BMJ letter and discover that there was a revised leaflet, dated December
2010. Not only was I not sent this leaflet, but the reply I received,
simply said "thank you for your feedback on the leaflet.
I fully agree that the new leaflet, which I was able to find via the
BMJ link, leaves much to be desired, but it is not even being used!
Competing interests: No competing interests
Modern NHS healthcare is supposedly 'open' and 'patient-centred'.
Phrases such as 'Patient Empowerment', 'Patient Partnership', 'Patient
Autonomy' and 'Patient Choice' are well-worn. But are they meaningful? You
can only fool some of the people some of the time.
The public deserves openness. Withholding information is lying by
default and invalidates the consent process. Cherry-picking information
offered to women about the considerable downside of screening mammography
shows lack of respect for a person's autonomy, erodes the doctor/patient
relationship and destroys trust.
Last week Cancer Research UK reported that breast cancer rates in the
UK have increased by 3.5 per cent over the last decade'. Apparently,
'experts have blamed lifestyle factors...' So women are bringing it on
themselves? Or is this nothing more than a rise in cellular 'differences'
picked up by today's more effective mammographic machinery? Are too many
healthy women becoming 'cancer patients' - unnecessarily?
If the public is to take more responsibility for its health, is it
not time for Daddy to let go of the reins?1
1 Coulter A. Editorial: Paternalism or partnership? Patients have
grown up - and there's no going back. BMJ. 1999; 319: 719-20
Competing interests: Author, Nothing Personal, disturbing undercurrents in cancer care, Radcliffe Publishing