Movers and Shakers: Parkinson's in the Media

“Could genetically modified worms help cure Alzheimer's and Parkinson's disease?”

“Parkinson's disease - it's as though I never had it.”

“Breakthrough discovery links immune system to Parkinson's progression.”“Have you seen this?”

When headlines like this appear, people with Parkinson’s know what comes next - a flood of messages asking “have you seen this?”

Every time there is coverage in the media of some breakthrough in treatng the world’s fastest growing neurological disease, excited friends and relatives will want to make sure we’ve seen it. But often we find when we take a look at the story that it’s either old news, overhyped or inaccurate.

This week on Movers and Shakers we put media coverage of Parkinson’s under the microscope and try to work out how it could be better. Given that five out of the six podcast hosts have had careers in journalism and broadcasting, we have lots of sympathy with the pressures reporters face when they are trying to make compelling material out of a complex subject. What is more our guests - Becky Barrow, News Editor of the Sunday Times and Juliet Tizard, communications director of Parkinson’s UK - share with us an interest in having more coverage of Parkinson’s on high profile media outlets.

But the one person furthest away from the media, Nick “the judge” Mostyn had a pretty positive view of how Parkinson’s was covered - at least when it came from specialists: “When it's done by their health experts, it's usually done responsibly and thoroughly. Whenever the report is reacting to an immediate story, you tend to get a certain amount of gibberish.”

As well as being a senior newspaper editor, Becky Barrow has a particular view of the coverage because at the beginning of her career thirty year ago her mother was diagnosed at 52 with Parkinson’s. She has been frustrated over the years, both by the lack of coverage compared with other conditions and by the clichéd view of Parkinson’s as a disease of old men. But she concedes that it is a complex condition to write about:

“You feel that if you mention five symptoms in an article, there are another fifty that you're not mentioning. So I have this battle with myself that, however I edit a story about Parkinson's, you're making it slightly inaccurate because you're not mentioning all the different ways that people experience it.”

Juliet Tizard says her job at Parkinson’s UK involves both marketing stories to journalists and intervening when media organisations are generating their own stories to try to make sure they are giving a true picture: “We've always got an eye on how are people with Parkinson's going to be reading this story, and what do we need to do as a charity to answer their questions, or to answer questions that a healthcare professional might have when someone with Parkinson's comes to them and says ‘I’ve seen this story - can I have this new miracle thing?’”

We all agree that reporters and editors need to be cautious about putting words like “miracle”, “cure”, or even “breakthrough” in headlines. But one story seemed to illustrate for us the difficulty in getting the tone right.

It involved a Sunderland man who had apparently experienced a radical improvement in his Parkinson’s symptoms following a new form of treatment. The headline on the online story written in January by BBC North East Health Correspondent Sharon Barbour read “Parkinson's patient 'feels cured' with new device”.

The article started:

“A man fitted with a pioneering, computer-controlled brain implant to tackle his Parkinson's disease says it works so well he is sometimes able to forget he has the condition.”

This local story was spotted by the BBC’s 10’o’Clock News team in London and ran in the “and finally’ slot providing a bit of good news at the end of the bulletin. That meant of course that people with Parkinson’s got a lot of those “have you seen this?” messages.

At first, it sounded as. though this “pioneering, computer-controlled brain implant” which had made Kevin Hill feel as though he had “been cured” must be some radical new treatment, but then it became clear that it was good old-fashioned Deep Brain Stimulation (DBS) which has been around for more than twenty years.

Ah, but this was about the new super-duper reactive DBS, which automatically adjusts the system according to brain activity rather than the patient having to visit the hospital periodically to have it tweaked. Newcastle’s Royal Victoria Infirmary, where Mr Hill was a patient, was one of four UK hospitals pioneering the new treatment.

But wait a minute - Kevin Hill had not yet had his DBS upgraded, so the extraordinary improvement in his symptoms, which meant that he sometimes forgot altogether that he had Parkinson’s, was the result of the original operation 12 months earlier.

There was general agreement around the pub table that this story was somewhat misleading and there was particular concern about the suggestion in the headline that this was a cure. Juliet Tizard was worried that it might give lots of people false hope:”It gave the impression that this was available on the NHS to anybody who might benefit from it, rather than describing it as an experimental treatment that had been tested in, I think, four or five NHS hospitals around the UK.”

When I approached Sharon Barbour about taking part in the podcast, I was pretty certain that she would turn me down or try to pass me on to a BBC manager. So it is to her immense credit that she was willing to have a lengthy conversation about how the story came about.

While she had not written the headline, she defended the use of the words “feels cured”. insisting “I can't tell patients what to say. If they tell me they feel cured, that to him, to Kevin, that is a truth.”

Sharon explained that in the online article and the longer television report on Look North and the One’o’Clock News she had made it clear that there was no cure for Parkinson’s. But she had been obliged to cut back some of the detail in the shorter piece which ran at 10pm. “It’s a very complicated story, particularly to tell on television,” she said, and went on to describe the challenge I know only too well - getting a complicated story into two minutes.

“What is the most interesting aspect of the story for the audience? The most interesting aspect is this man had Parkinson's…… he now feels cured. That's extraordinary, but let's look at the science in probably 20 seconds.”

But Sharon Barbour said she welcomed feedback from the audience and would try to learn from it.

As journalists we sympsthised with Sharon - ‘I feel cured’ is a great line and who would not want that kind of uplifting message in their piece. But as people who know quite a lot about Parkinson’s we wanted just a bit more context. Gillian Lacey-Solymar, who has had DBS, put it best: “I would have let the person say the part about ‘it feels like a cure to me’, and then say, it may well feel like that, but typically DBS will only last five years because it only masks symptoms and doesn't cure them. How long does that take - 20 seconds?”

Don’t forget to sign our petition calling on the government to implement our “Parky Charter” for better Parkinson’s care.