Jeremy Paxman has said Parkinson’s disease “makes you wish you hadn’t been born”, as he delivered a list of recommendations about the condition to Downing Street.
The former University Challenge and Newsnight presenter and fellow members of the Movers and Shakers podcast – which discusses the challenges of living with the disease – marked World Parkinson’s Day by presenting the Parky Charter and a petition with tens of thousands of names to Number 10.
The podcast also features former BBC journalist Rory Cellan-Jones, the broadcaster’s ex-Europe and North America editor Mark Mardell, correspondent Gillian Lacey-Solymar, the late Princess Diana’s divorce barrister Sir Nick Mostyn, and Vicar of Dibley co-writer Paul Mayhew-Archer.
The Parky Charter has five key recommendations: swift access to specialists for individuals with Parkinson’s under the NHS, the introduction of a Parkinson’s UK pamphlet for enhanced awareness and support, the implementation of a Parkinson’s passport granting automatic entitlement to specific benefits, improved comprehensive care, including regular consultations with a Parkinson’s nurse, and increased Government funding for research for a cure for the disease.
Prime Minister Rishi Sunak praised the charter, saying he is “very supportive of the excellent work that the Movers and Shakers do and the charter will rightfully receive 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: “The fact that they (the Government) have ignored all their responsibilities to date indicates to me that they’re not going to get any better.
“And I suspect that the form of words devised by the Ministry of Health 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 voiced his frustration 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 he had been diagnosed with Parkinson’s and stepped down as the host of University Challenge.
Paxman began his broadcasting career on the BBC’s graduate trainee programme in 1972.
The 73-year-old added: “(Parkinson’s) may not kill you but it will make you wish you hadn’t been born.
“There’s nothing in it for the drug companies, it’s just more money for them.”
Movers and Shakers began in February 2023 and is described by Paxman as “good fun”.
Mardell said: “None of us began our podcast Movers and Shakers with the slightest intention of becoming campaigners, let alone taking a charter to Downing Street.
“But the more we heard from our listeners throughout the series about the way they had been treated, ignored and misunderstood, the more shocked and outraged we became.
“Now we are determined to use what profile we have to demand some simple measures that would make a huge difference.
“Our trip to Number 10 is not the end, merely the first steps on a long road. We may stagger, we may be slow, but we will move and shake the system until it makes life better for our fellow Parkies.”
About 153,000 people have been diagnosed with the condition, although estimates suggest 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 with Parkinson’s who are using their combined voices to create a powerful platform for change.
“We support the principles of the Parky Charter, which echo the issues that the Parkinson’s UK community raises with us.”
Carl Beech, chief executive of charity Spotlight YOPD, said: “When I was diagnosed with young onset Parkinson’s, I’ll never forget the words “incurable, degenerative and progressive” ringing in my ears as I left the consultant’s room. I knew that life was different now, and looked for help.
“The Movers and Shakers podcast was the first thing I listened to. It gave me great comfort to know I wasn’t alone. However, I was young and so I had a similar but also different battle on my hands.
“One of having to work with declining health and yet no easy access to financial help. Having to fight and often failing to get the help needed is soul-destroying.”
A Department of Health and Social Care spokesperson said: “We want a society where every person with a neurological disease, along with their families and carers, receives high quality, compassionate care – and having a better understanding of diseases like Parkinson’s is vital in making sure we can provide the right care at the right time.
“That’s why we committed to spend at least £375 million in research into neurodegenerative diseases over five years, so that we can better understand these conditions and improve outcomes for patients.”
