by Jeremy Paxman has said Parkinson’s disease “makes you wish you’d never been born”, as he delivered a list of recommendations about the condition to Downing Street.
The former University Challenge and Newsnight presenter and co-host of the Movers and Shakers podcast – which discusses the challenges of living with the disease – celebrated World Parkinson’s Day by presenting a Parky Charter and a petition with thousands of names to Number 10.
The podcast also features former BBC journalist Rory Cellan-Jones, the broadcaster’s former Europe and North America editor Mark Mardell, correspondent Gillian Lacey-Solymar, the late Princess Diana’s divorce lawyer Sir Nick Mostyn, and Vicar of Dibley co-writer Paul Mayhew- archer.
The Parky Charter has five key recommendations: rapid access to specialists for individuals with Parkinson’s disease under the NHS, the introduction of the Parkinson UK pamphlet for improved awareness and support, the implementation of a Parkinson’s passport which grants automatic entitlement to specific benefits, care improved comprehensive care, including regular consultations with a Parkinson’s nurse, and increased Government funding for research into a cure for the disease.
Prime Minister Rishi Sunak praised the charter, saying it is “very supportive of the excellent work done by the Movers and Shakers and that the charter will be given the attention it deserves”.
However, Paxman said he believes the charter and petition will have “no effect whatsoever” on the Government.
He told the PA news agency: “They (the Government) ignore all their responsibilities so far that tells me they are not going to get better.
“And I doubt that the form of the words that the Ministry of Health devised will confirm that.
“I don’t think we’re going to get anywhere. You feel like you’re banging your head against a brick wall.”
The Leeds-born broadcaster also expressed his frustrations with the public’s treatment of Parkinson’s sufferers.
He said: “You want to say, get the f*** out of the way, that’s what you want to say.”
In May 2021, he announced that he had been diagnosed with Parkinson’s and stepped down as host of University Challenge.
Paxman began his broadcasting career on the BBC’s postgraduate training program in 1972.
The 73-year-old said: “Maybe (Parkinson’s) won’t kill you but you’ll eat you weren’t born.
“There’s nothing in it for the drug companies, it’s just more money for them.”
Movers and Shakers started in February 2023 and Paxman describes it as “good fun”.
Mardell said: “None of us started our Movers and Shakers podcasts with the slightest intention of being campaigners, let alone taking a charter to Downing Street.
“But the more we heard from our listeners over the course of the series about how they were treated, ignored and misunderstood, the more horrified and outraged we became.
“We are now determined to use the profile we have to demand some simple measures that would make a big difference.
“Our journey to Number 10 is not the end, it’s just the first steps on a long road. We may go, we may be slow, but we will move and shake the system until it makes life better for our fellow Parkies.”
Around 153,000 people have been diagnosed with the condition, although estimates suggest that more than 200,000 may be affected.
Caroline Rassell, chief executive of the charity Parkinson’s UK, said: “The Movers and Shakers are an incredible group of people living with Parkinson’s who use their combined voices to create a powerful platform for change.
“We support the principles of the Parky Charter, which echo the issues raised by the UK Parkinson’s community with us.”
Carl Beech, chief executive of charity Spotlight YOPD, said: “When I was diagnosed with young-onset Parkinson’s disease, I will never forget the words “incurable, degenerative and progressive” ringing in my ears as I left the counselor’s room. I knew life was different now, and sought help.
“The Movers and Shakers podcast was the first thing I listened to. It gave me great comfort to know that I was not alone. However, I was young so I had a similar but different battle on my hands.
“We have to work with declining health and still no easy access to financial assistance. It is soul-destroying to have to fight and often not get the help.”
A Department of Health and Social Care spokesman said: “We want a society where everyone with a neurological disease, along with their families and carers, receives high-quality, compassionate care – and has a better understanding of diseases like Parkinson’s is vital to ensure we can provide the right care at the right time.
“That’s why we’ve committed to spending at least £375 million on research into neurodegenerative diseases over five years, so we can better understand these conditions and improve outcomes for patients.”
