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Rory Cellan-Jones: Parkinson’s feels like a forgotten disease
Former BBC reporter says people are having to wait too long for a diagnosis
![Rory Cellan-Jones said wait times for a Parkinson's diagnosis aren't "good enough"](/https/www.telegraph.co.uk/content/dam/news/2024/03/28/TELEMMGLPICT000294327199_17116434116040_trans_NvBQzQNjv4BqVHsCYJbQG_KyXuLyAAJLY3W9dx7qxOUDZw4s0BHxdNo.jpeg?imwidth=680)
Parkinson’s feels like a “forgotten” condition, former BBC reporter Rory Cellan-Jones has said.
The 66-year-old has said current waiting times to get diagnosed aren’t “good enough” and has insisted there is too much red tape making it difficult for those with the condition to claim benefits.
Cellan-Jones was diagnosed with the disease in 2019 after a viewer wrote in to the BBC advising him to get checked having noticed the broadcaster’s hand shaking. He now hosts Movers and Shakers, a podcast based around the illness, alongside Jeremy Paxman, who revealed he has Parkinson’s in 2021.
The corporation’s former technology correspondent says Parkinson’s feels like a ‘forgotten’ illness despite more than 150,000 people living with the condition in the UK.
He told Roger Bolton’s Beeb Watch podcast: “It is the fastest growing neurological condition: it’s something that people tend to get when they’re older and, as we’ve got an ageing population, I suppose we’ll spot more of it. But it feels a bit of a forgotten condition or an embarrassing condition.
“We hear (on the podcast) from people who’ve not come out about it, particularly young people, so people who are still at work are very loath to tell their bosses they’ve got it because they think they’ll be basically put on the scrap heap.”
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As part of the podcast, which also features Gillian Lacey-Solymar, Mark Mardell, Paul Mayhew-Archer and Sir Nicholas Mostyn, Cellan-Jones has helped draw up a charter urging the Government to take action to improve the lives of people with Parkinson’s.
This includes calls to slash the bureaucracy faced by those with Parkinson’s when trying to apply for benefits. Current forms, it is argued, do not take into account the drastic day-to-day differences experienced by sufferers.
Cellan-Jones said: “The thing we get so many letters about is the delay in seeing a consultant for diagnosis and then huge gaps between visits to a consultant. We want that changed: we’ve had letters from people who have been told they’re going to wait more than a year and that’s just not good enough. So we want a set period of time beyond which they won’t wait.
“Then we’ve got an idea for a Parky Passport which would identify people with Parkinson’s and therefore maybe cut some of the bureaucracy before they get benefits.”