Media attention on health conditions can be a mixed blessing, says Amy Bowen
As health professionals, we often struggle to raise the profile of long-term conditions, help the public understand the realities of living with them, and communicate the difficult choices that people face about treatments. But when the media does decide to turn its attention to a condition, the spotlight often comes at a cost.
The attention usually arrives for one of two reasons. Firstly, it may have hitched a ride on the back of a bad news story about how the NHS is letting down a particular group of patients. Secondly, the prospect of a big medical breakthrough – a so-called ‘miracle cure’ – may be in the news, which always raises hopes and expectations that can be very hard to manage.
I work for a multiple sclerosis charity and opportunities do not come along often to get the condition in the public eye. Recently, MS had its big flush of media attention because of what looked like a miracle-cure. The BBC current affairs programme Panorama followed four people with MS having stem cell therapy, and explored the seemingly remarkable results they experienced.
The reporters did a fairly balanced job, but we only saw people who had done well and we did not see how the treatment is demanding. Rebooting the immune system in this way is full of risks. What is more, the treatment is still experimental, so it is rarely available outside of a clinical trial, although some patients take huge risks and travel for expensive treatment in countries such as Mexico and Russia.
After Panorama aired, social media was set alight with discussion about MS. TV and radio gave it a lot of coverage and in one sense this was a fantastic opportunity for the whole MS community. But I thought a lot about those living with MS, their families and friends, who watched the programme and wondered whether stem cell therapy would really live up to expectations. Could it become available in time for them or would they end up left out again because their type of MS would not respond to the treatment?
I also thought a lot about the MS teams, especially the MS specialist nurses, trying to meet their patients’ need to know what the story means for them – and to present a balanced picture of the evidence, as far as it is known. However it comes, media attention can put a lot of pressure on frontline services. People naturally look to their health professionals to make sense of the headlines, put them in some kind of personal context – and to do that without taking away hope or confidence.
We did our bit to let nurses know what was coming and to send them reliable information that they could share with their patients. Patient organisations should really come into their own in these situations – getting their arms around the community of those living with their condition and their healthcare teams, so that they can make the best of their brief time in the spotlight.
Amy Bowen is director of service development at the Multiple Sclerosis Trust.
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