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Angela Coulter

Angela Coulter is a health policy analyst and researcher, with special interests in patient and public involvement. 

Did you hear the tragic story publicised by the BBC last week? Gemma Nuttall was diagnosed with ovarian cancer during her pregnancy. She faced an agonising choice of undergoing immediate treatment, with obvious risks to the baby, or delaying this until after the birth. She chose to delay and a few months later gave birth to a healthy baby girl.

But the cancer spread quickly and she was told she had only months to live. Faced with this appalling news, her family launched a desperate search for a cure.

Unproven therapies

Scouring the internet, they found a private clinic in Germany offering a variety of unproven therapies, including ozone treatment and vitamin infusions, alongside drugs not available on the NHS. The cost was huge, so they took out loans, sold a house, and launched a crowdfunding campaign and, with help from Kate Winslet, they eventually succeeded in raising sufficient cash.Gemma and her family made frequent exhausting journeys to the German clinic, lured there by claims of benefit and hopes of a cure. Tragically, their efforts were in vain and Gemma died.​Her grieving mother was left to ponder on whether they had made the right decision: “I ask myself should we have done the bucket list and spent the last few months of Gemma’s life with her daughter, trying to be happy and make memories?”

Medicine has been oversold to the public and it’s really hard to challenge entrenched faith in its powers.

This story appeared on 6 March, the day after a conference organised by National Voices to introduce patient representatives to the ideas behind Rethinking Medicine.

I was the first speaker, tasked with introducing the campaign. I began by acknowledging the huge advances in medical knowledge, resulting in many new and more effective treatments, the like of which our forebears would not have dreamed possible. But, I suggested, there were also downsides to these amazing technological advances, including the risk of over diagnosis, over treatment, and inappropriate medicalisation of everyday problems.

 

Greater effort and honesty needed

I suggested that greater effort was needed to provide patients and public with reliable information on the balance of benefits and harms, coupled with greater honesty about the limitations of medical care.

Several of the patient representatives in the audience reacted negatively to these arguments. While I accept this could have been due to my lack of rhetorical eloquence, I do think it points to a more fundamental problem – medicine has been oversold to the public and it’s really hard to challenge entrenched faith in its powers.  Some of those who spoke up were reluctant to accept that screening or early diagnosis can sometimes be wasteful or even harmful, that more treatment is not always beneficial, or that we should be wary of therapies that are unsupported by evidence.

While I completely understand the desire to cling on to hope, especially when faced with a devastating diagnosis such as that experienced by poor Gemma and her family, it does leave a dilemma for those of us who want to engage a wider audience in Rethinking Medicine.

How can we open up a dialogue that encourages greater scepticism about assumptions of benefit without falling into the trap of appearing to argue for more rationing? What should we be doing to help people adopt a more critical, evidence-based approach to protect themselves against exploitation by quacks and snake-oil salesmen? And how can we persuade the public that medical care delivery needs a rethink?

​Suggestions, please!

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