Tony Avery, Professor of Primary Health Care in the University’s School of Community Health Sciences, who led the research and spoke at the conference, said: “Not only do patients’ voices matter, the experiences of everyday people taking prescribed medicines can also increase the understanding of adverse effects.
“Studies from the UK and the Netherlands show that patients do help identify new reactions. For example, the aggression associated with varenicline — an anti-smoking drug — was identified early because of patient reporting.
“Very soon, European legislation will require all member states to introduce direct patient reporting. However, the lack of awareness about this opportunity in the UK is likely to limit what patients’ voices can achieve unless there is greater promotion of the Yellow Card scheme.”
In 2008, the European Commission estimated that ADRs kill 197,000 EU citizens a year, at a cost of €79 billion. However, few people in the UK — only 1 in 12 — knows about how to report adverse drug reactions.
At the conference, Is the Patient Voice Loud Enough?, organised by Prescribing and Research in Medicines Management (PRIMM) and the DSRU, delegates heard tragic stories of how families have been torn apart by the serious side effects of prescribed medication.
Will (not his real name) wept as he recounted how his mother had to be restrained and bundled into a police van by seven officers after she had a psychotic reaction to the cortico-steroid prednisolone that she had been prescribed for an arthritic complaint. She had run into the street and become a danger to herself, through no fault of her own.
As Will later discovered, there were many other patients who had suffered a serious reaction to this medication, ranging from depression to the same type of agitation or psychosis suffered by his mother. The whole episode left his whole family scarred and his mother a shadow of her former self, completely unwilling to discuss the events of that day ever again.
Another video case study centred on the story of medical student Jon Medland. His father, also called Jon Medland, explained what happened after his final-year student son had decided to take Ro-accutane for his mild acne. The build-up of out-of-character depression leading to psychosis within just a few weeks of starting the drug ended tragically in the suicide of the bright young student.
The tragedy was underscored by a remark Jon had made to his father that after years of medical education, students only spent a few hours learning about adverse drug reactions.
Patient representatives at the conference expressed anger about the lack of publicity surrounding the Yellow Card reporting scheme and that doctors too seemed largely ignorant about direct patient reporting for ADRs.
Professor Janet Krska, of the School of Pharmacy and Biomolecular Sciences at Liverpool John Moores University said: “Our research also showed that some patients found their doctors were dismissive of their attempts to alert practitioners to a potential ADR.
“Doctors and other health professionals need to regard patients’ experiences positively and help patients be involved in prescribing decisions and report their adverse reactions.”
The conference which was held in London on June 24 was the first event of its kind and aimed to bring together academic researchers and teachers, GPs, experts in detecting, assessing, understanding and preventing drug side effects and patients to learn more about and debate this important topic.
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Notes to editors: The University of Nottingham, described by The Sunday Times University Guide 2011 as ‘the embodiment of the modern international university’, has award-winning campuses in the United Kingdom, China and Malaysia. It is ranked in the UK's Top 10 and the World's Top 75 universities by the Shanghai Jiao Tong (SJTU) and the QS World University Rankings. It was named ‘Europe’s greenest university’ in the UI GreenMetric World University Ranking, a league table of the world’s most environmentally-friendly higher education institutions, which ranked Nottingham second in the world overall.
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