Newsletter 117

HealthWatch Newsletter - Winter 2021-22

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(Print)  ISSN 3033-3903; (Online) ISSN 3033-3911

News in brief

We will be HealthSense

For over a decade we have dealt with the confusion and daily administrative burden resulting from our charity’s (un-registered and with a copyright we were not able to enforce) name being appropriated by the completely unrelated government initiative “Healthwatch England”. At our October AGM members voted for change and, as a result, early in 2022 we will adopt the name HealthSense. A logo is being developed that will look new and modern while retaining enough of the feel of our original branding to limit any confusion.

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COVID-19 Data – what’s the story?

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The joint winner of the HealthWatch Award 2021 was Christina Pagel, Professor of Operational Research, Clinical Operational Research Unit, University College London and a member of Independent SAGE. Presenting the award, Nick Ross said, “How politicians reach their views on healthcare is of huge importance, especially at the moment. Christina Pagel has numeracy, literacy; she understands risk, and managing uncertainty. She also has a disarming way of taking things that to many of us are extraordinarily complex, and finding ways to unravel them and make them seem simple as daylight.” Professor Pagel shares the 2021 award with David Spiegelhalter.

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Chair’s report 2021

Presented by HealthWatch’s Chair, Susan Bewley, at the 2021 HealthWatch AGM on 6 October, at the Royal Society of Medicine.

Susan AGM2021

This has been a steady year. HealthWatch holds its first hybrid (mixed in-person and virtual) AGM thanks to the continuing pandemic and mitigation via vaccinations and other precautions and moves to the RSM as a more accessible venue. Our membership numbers remain constant (see the table below). Our trustees continue to give their volunteer service with good attendance over Zoom. With inevitable turnover, we are sad to say goodbye and offer many thanks to the irreplaceable Anne Raikes who is stepping down as Treasurer after managing our finances so prudently for so many years.

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HealthWatch congratulates our sister organization on the other side of the world on their anniversary. Here, founding president John Dwyer talks about the early days of the campaigning Australian health champions, their achievements, and what lies ahead

In the early 80s, many of my patients with acquired immune deficiency syndrome (AIDS) were promised expensive cures by ‘alternative practitioners’. In 2002, the state’s Health Minister asked me to chair an inquiry, the New South Wales Healthcare Complaints and Consumer Protection Advisory Committee (HCCPAC), to tighten controls on "wonder drugs" and "miracle cures", and to "combat dodgy cures and health practices". The committee of non-evidenced based practitioners deliberated for a year. Consensus was impossible.

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HRA MakingTransparencyEasy

By Till Bruckner, Caroline Struthers and Mandy Payne

After decades of talking about the problem of transparency in research, the UK is finally striding forward with important new initiatives that we hope will be copied globally.

Clinical trial transparency is not about adding bureaucracy and hampering innovation, it is about protecting patients and the quality of research. Registering clinical trials publicly, even before they start, helps other scientists discover who is currently researching which treatments, preventing needless duplication of medical research efforts. Wasted research comes at mind-boggling financial and also human costs, as patients in clinical trials may be subjected to unnecessary risk. And by requiring investigators to declare publicly at the outset what their study will be measuring, it is harder to manipulate the resulting data at a later stage, either to distort the evidence or for financial gain or glory.

With this in mind HealthWatch welcomed the announcement on 20 October this year from the NHS's Health Research Authority (HRA), one of the bodies that regulates UK research, of a new system to ensure that every single clinical trial will be listed on a trial registry from the outset (for more on this, see below).

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Colin Brewer, of "My Death My Decision" is concerned that open and respectful discussion about a topic that affects us all is being stifled

In April 2019, five senior consultant palliative care physicians (PCPs) wrote to the BMJ in support of assisted dying but explained why despite having “94 years of consultant level experience in palliative medicine” between them, they had to support it anonymously because “all of us have been stifled from talking about this topic”.(1) Every time it comes up in public debate, “the Association of Palliative Medicine emails its members with the clear and unequivocal direction that they are to oppose these developments. There is no concession to the possibility that other doctors practising high quality, ethical specialist palliative medicine may hold a different opinion—or simply want to hear different views”. Even worse, the specialty lacks “a climate of open and fair discussion…where doctors do not fear being criticised, ostracised, or—worst of all—having their careers threatened”. These are extraordinary claims but, unfortunately, entirely believable. To realise just how extraordinary and unique they are, you only need to remember the abortion debate that occupied many pages of medical journals in the late 1960s and early 1970s. Abortion divided medical opinion then just as much as assisted dying does now but numerous senior consultant gynaecologists and obstetricians publicly supported reform despite the opposition of many senior members of the obstetric establishment. 

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By Mitzi Blennerhassett

"Patients’ Emancipation: Towards Equality" by Charlotte Williamson was published 2021 by Quacks Books, York. RRP £15.00 + p&p, 170 pages, soft-cover. 

This remarkable book had an immediate impact on me.

As a patient activist aiming to improve health services, I had often found useful information too difficult to obtain. I had felt like a lone voice pushing against brick walls, as controlled and disenfranchised as women from an earlier age who sought voting rights. Sometimes there seemed to be a deliberate ‘Them and Us’ policy which kept patients in their place to prevent upsetting the status quo. Genuine patient centred care seemed an unobtainable goal.

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Last word

By Rupert Fawdry

The flood of thought-provoking books continues unabated: Prisoners of Geography, The Chimp Paradox, Wilful Blindness, Thinking Fast and Slow, There is No Planet B, and Gladwell’s books.

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