Parkinson’s disease “makes you wish you hadn’t been born”, Jeremy Paxman said as he gave Downing Street a list of recommendations on the disease.
The former University Challenge and Newsnight presenter and other members of the Movers and Shakers podcast, who discuss the challenges of living with the disease, marked World Parkinson’s Day by presenting the Parky Agreement 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 former Europe and North America editor Mark Mardell, reporter Gillian Lacey-Solymar, the late Princess Diana’s divorce lawyer Sir Nick Mostyn and Vicar of Dibley co-author Paul Mayhew. Archer.
The Parky Charter has five key recommendations: rapid access to specialists on the NHS for people with Parkinson’s, introduction of a Parkinson’s UK leaflet for greater awareness and support, introduction of a Parkinson’s passport giving automatic entitlement to certain benefits, improved comprehensive care, a Parkinson’s including regular consultations with the nurse and increased Government funding for research into treatments for the disease.
Chancellor Rishi Sunak praised the charter and said he was “very supportive of the excellent work done by Movers and Shakers and the charter will rightly receive the attention it deserves”.
But Paxman said he believed the agreement and petition would have “no impact” on the Government.
He told the PA news agency: “The fact that they (the Government) have so far ignored all their responsibilities tells me that they are not going to get any better.
“I think the discourses developed by the Ministry of Health will confirm this.
“I don’t think we’re going anywhere. You feel like you’re hitting your head against a brick wall.”
The Leeds-born broadcaster also expressed his disappointment with the public’s treatment of Parkinson’s patients.
He said: “You want to say, get the fuck 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 resigned as the host of University Challenge.
Paxman began his broadcasting career in 1972 on the BBC’s graduate trainee programme.
The 73-year-old added: “(Parkinson’s) may not kill you, but it will make you wish you hadn’t been born.
“This doesn’t do any good for the pharmaceutical companies, it’s just more money for them.”
Movers and Shakers launched in February 2023 and is described by Paxman as “a lot of fun.”
Mardell said: “None of us started our podcast Movers and Shakers with even the slightest intention of becoming campaigners, let alone being hired by Downing Street.
“But the more we heard from our listeners throughout the series about how they were treated, ignored and misunderstood, the more shocked and outraged we became.
“We are now determined which profile we should use to call for some simple measures that will make a big difference.
“Our journey to Number 10 is not the end, but only the first steps of a long road. “We may falter, we may be slow, but we will move and shake the system until we make life better for our Parkie friends.”
Approximately 153,000 people have been diagnosed with the condition, but estimates suggest more than 200,000 may be affected.
Caroline Rassell, chief executive of the Parkinson’s UK charity, said: “Movers and Shakers are an incredible group of Parkinson’s patients who are using their collective voice to create a powerful platform for change.
“We support the principles of the Parky Charter, which reflect the issues the UK Parkinson’s community has raised with us.”
Carl Beech, chief executive of the charity Spotlight YOPD, said: “I will never forget the words “incurable, degenerative and progressive” ringing in my ears as I left the consultant’s office when I was diagnosed with young-onset Parkinson’s. I knew life was different now and I sought help.
“The first thing I listened to was The Movers and Shakers podcast. It was such a relief to know I wasn’t alone. However, I was young and so I experienced a similar but also different war.
“Having to work in an environment where financial aid is not easy to access while your health condition is deteriorating. “Having to fight and often not getting the help needed is soul-destroying.”
A Department of Health and Social Care spokesman said: “We want a society where every person with a neurological disease receives high-quality, compassionate care, along with their families and carers – and it is vital that we better understand diseases such as Parkinson’s so we can of course provide the right care at the right time.
“That’s why we’ve committed to spending at least £375 million over five years on research into neurodegenerative diseases, so we can better understand these conditions and improve outcomes for patients.”