• Publish Your article
  • Editorial Policy
  • Contact
  • Advertise
Saturday, September 6, 2025
No Result
View All Result
UK Herald
  • Home
  • Politics
  • Business
  • Entertainment
    • All
    • Sports
    England rugby stadium Twickenham given new name after more than 100 years in shock new deal

    England rugby stadium Twickenham given new name after more than 100 years in shock new deal

    Peter Morgan dead at 65: Former Wales and Lions rugby star who became a politician passes away as club pays tribute

    Peter Morgan dead at 65: Former Wales and Lions rugby star who became a politician passes away as club pays tribute

    Horse racing tips: Unexposed Group 1 contender can stun the big guns at 14-1

    Horse racing tips: Unexposed Group 1 contender can stun the big guns at 14-1

    Woman ‘raped seven times by two French rugby stars who left her riddled with bite marks & with horror injuries’

    Woman ‘raped seven times by two French rugby stars who left her riddled with bite marks & with horror injuries’

    Horse racing tips: Gary Moore’s charge can gain revenge after falling last time out

    Horse racing tips: Gary Moore’s charge can gain revenge after falling last time out

    Ian Buckett dead at 56: Former Wales rugby star who was ‘admired and feared equally’ dies as tributes pour in

    Ian Buckett dead at 56: Former Wales rugby star who was ‘admired and feared equally’ dies as tributes pour in

    Horse racing tips: Bash the bookies with these longshots including 9-1 fancy

    Horse racing tips: Bash the bookies with these longshots including 9-1 fancy

    Shayne Philpott dead at 58 – New Zealand All Blacks rugby legend dies after suffering ‘medical event’

    Shayne Philpott dead at 58 – New Zealand All Blacks rugby legend dies after suffering ‘medical event’

    Horse racing tips: This 7-1 chance appears to have been laid out for race he won last year

    Horse racing tips: This 7-1 chance appears to have been laid out for race he won last year

  • Lifestyle
    • All
    • Fashion
    • food
    • Health
    • Travel
    Europe’s 20 cheapest beach towns revealed – golden sand and £33 flights

    Europe’s 20 cheapest beach towns revealed – golden sand and £33 flights

    Discover Africa’s hidden gem for winter sun – luxury, culture and no jetlag

    Discover Africa’s hidden gem for winter sun – luxury, culture and no jetlag

    Little-visited Caribbean island is getting new £292,000,000 airport and first-ever direct UK flights

    Little-visited Caribbean island is getting new £292,000,000 airport and first-ever direct UK flights

    Gigantic £777,577,500 cruise ship with record-breaking water park to launch from UK

    Gigantic £777,577,500 cruise ship with record-breaking water park to launch from UK

    British Airways First Lounge at Heathrow Airport review: ‘So relaxing, I missed the final boarding call’

    British Airways First Lounge at Heathrow Airport review: ‘So relaxing, I missed the final boarding call’

    The cheapest Spanish holiday destinations revealed – from £13 flights to £31 hotels

    The cheapest Spanish holiday destinations revealed – from £13 flights to £31 hotels

    I followed a dusty path in Ibiza and found the ‘White Isle’s’ most iconic hotel

    I followed a dusty path in Ibiza and found the ‘White Isle’s’ most iconic hotel

    The UK’s £12 train journey where you can see polar bears from your seat

    The UK’s £12 train journey where you can see polar bears from your seat

    ‘Europe’s Hawaii’ that’s often dubbed a ‘Canaries alternative’ is having a record-breaking year

    ‘Europe’s Hawaii’ that’s often dubbed a ‘Canaries alternative’ is having a record-breaking year

    I’ll never go on another slum tour after speaking to a local

    I’ll never go on another slum tour after speaking to a local

    Trending Tags

    • Golden Globes
    • Mr. Robot
    • MotoGP 2017
    • Climate Change
    • Flat Earth
  • Health
  • Opinion
  • Science
  • Tech
  • Crypto
  • Travel
  • Real Estate
  • Sports
  • More
    • Press Release
UK Herald
No Result
View All Result

Graeme Downie: ‘We must do more than raise awareness of Parkinson’s — we must act’

by Justin Marsh
May 9, 2025
0
0
SHARES
Share on FacebookShare on TwitterReddit


April was Parkinson’s Awareness Month and knowing how many people live with the disease, I found it shocking there has never been a full debate in the chamber on the issue.

This is despite a community of some 153,000 people across the UK who are navigating life with Parkinson’s along with their loved ones, and the dedicated professionals who support them.

While it is important to raise awareness of Parkinson’s, the fastest-growing neurological condition in the world, we must commit to doing much more than that. We must act.

It is sometimes said that “People do not die from Parkinson’s” but the condition is life-limiting; complex. And relentless. It does not discriminate by postcode, profession or political affiliation.

The reality of living with Parkinson’s can be harsh. While categorised as a movement disorder, it can affect movement, speech, swallowing and cognition. It can cause hallucinations, depression and pain.

It strips away not only physical ability but voice, independence and identity. And, it affects not only those diagnosed, but their loved ones, in profound and lasting ways.

There is no cure. There is no treatment to slow or halt progress. There is no respite. And yet, there is hope.

One of the most emotional things I read when preparing for the debate in the Chamber was a poem called “A jump too far” by Bobbie Coelho, who was diagnosed with Parkinson’s in 2002.  I read it out in full in the Chamber, with difficulty in places.

I wish you could jump into my shoes for just an hour or so
To know just how I feel, for then you would know
The truth about PD, as far as it goes
I wish you could jump into my shoes when my face freezes
You can’t understand when I talk (I know it’s not easy)
To hear me called a miserable cow
How I wish I could talk happily as they’re doing now
I wish you could jump into my shoes when I can’t move across the floor.
How I admire your movements, so easy and so free
I just wish it could also be me
I wish you could jump into my shoes when I can’t walk down the street
And get stares from the people that I meet
I wish you could jump into my shoes when I can’t do anything at all
And, reluctantly, have to watch my husband do it all
I wish you could jump into my shoes to see a future I don’t want to see
With no cure in sight and I know there will never be
You hear about cancer there’s adverts all around
But awareness of PD there’s not a sound
If you could jump into my shoes
You would see how frightening PD can be 

I have been truly touched by the willingness and openness of constituents, supported by Parkinson’s UK and Cure Parkinson’s, to share their experiences.

“Movers and Shakers” is a group of people with Parkinson’s whose outstanding Podcast has been a beacon of support for the Parkinson’s community.

They include faces familiar to parliament including Gillian Lacey-Solymar, Rory Cellan-Jones, Mark Mardell and Sir Nicholas Mostyn.

On World Parkinson’s Day they brought together hundreds of people with Parkinson’s to Old Palace Yard, and they sang in one voice — literally sang a reworked version of “I will survive” — their demands to have “The Parky Charter” adopted.

First: Speedy specialists 

People referred for a possible Parkinson’s diagnosis must see a consultant within 18 weeks and have annual reviews thereafter.

Second: Instant information  

A Parkinson’s diagnosis should be accompanied by immediate, clear, and accessible information.

Third: Parkinson’s passport  

A tool to communicate patients’ needs across all healthcare touchpoints.

Fourth: Comprehensive care  

Every person with Parkinson’s should have access to the full multidisciplinary team: specialist nurses, physiotherapists, occupational and speech therapists.

Fifth: Quest for a cure  

A determined and funded national commitment to support Parkinson’s research.

I heard from someone who had been diagnosed with Young Onset Parkinson’s Disease at the age of just 47.

He was told that the person at the top of the waiting list had been waiting for 39 weeks so far. 39 weeks, for an urgent appointment.

I imagined what it must be like for someone, and for their loved ones, to sit with a suggested diagnosis of something so serious, so significant, and to be having to wait nine months before seeing a specialist.

But this crisis doesn’t end with a diagnosis. In fact, for many, that’s when the sense of abandonment begins.

Nearly a quarter of people diagnosed with Parkinson’s report they were not given adequate information about their condition.

I spoke to a clinician who was emphatic in his view that people with Parkinson’s need to be able to access specialist services easily.

In turn, those specialist services need to be able to recognise when advanced therapies like Apomorphine infusion, Pro-duo-dopa and Deep Brain Stimulation may be helpful.

Our healthcare professionals are doing heroic work. But they are overstretched.

Today, we are 100 full-time equivalent Parkinson’s nurses short of what is needed.

Only 44% of people with Parkinson’s have access to occupational therapists, 62% to physiotherapists, and just 40% to speech and language therapists.

We stand on the brink of transformative discoveries. We have scientists. We have momentum. What we need now is funding.

The Edmond J Safra Accelerating Clinical Trials in Parkinson’s Disease platform trial is hosted by University College London and supported by the National Institute for Health and Care Research and Cure Parkinson’s is a global first.

A multi-arm, multi-stage trial that fast-tracks promising treatments. Government investment of £4.6 million leveraged an additional £3.8 million in overseas funding, and catalysed a £16 million programme.

But the government must go further. A national registry, modelled on successful schemes in the US, could connect patients to clinical trials more effectively. Better data will mean better, faster, and more inclusive research.

As Helen, a person living with Parkinson’s told me, “You’re not doing it for you. You’re doing it for future generations.”

Politics.co.uk is the UK’s leading digital-only political website. Subscribe to our daily newsletter for all the latest news and analysis.

The post Graeme Downie: ‘We must do more than raise awareness of Parkinson’s — we must act’ appeared first on Politics.co.uk.



Source link

Related Posts

Digital ID can be Labour’s path to smashing the gangs and fixing public services

Digital ID can be Labour’s path to smashing the gangs and fixing public services

by Justin Marsh
September 4, 2025
0

I knocked on enough doors as the Labour candidate in Central Suffolk and North Ipswich during last year’s general election to know what topics come up in conversation with voters unprompted. Whether the...

Cross-party MPs publish ‘ready to go’ blueprint for electoral reform commission

Cross-party MPs publish ‘ready to go’ blueprint for electoral reform commission

by Justin Marsh
September 2, 2025
0

A group of cross-party MPs have set out a “ready to go” blueprint for an independent review of the UK’s first past the post (FPTP) electoral system. The all-party parliamentary group (APPG)...

Baroness Ritchie: ‘To restore trust, government must stop rewarding companies that cause public harm’

Baroness Ritchie: ‘To restore trust, government must stop rewarding companies that cause public harm’

by Justin Marsh
August 31, 2025
0

Since the 1980s, public trust in government has been in steady decline. The recent findings from the 2025 British Social Attitudes survey revealed that just 12% of the population trusted the government...

Ben Goldsborough: ‘Nigel Farage and Reform UK would break what makes Britain strong’

Ben Goldsborough: ‘Nigel Farage and Reform UK would break what makes Britain strong’

by Justin Marsh
August 29, 2025
0

When Nigel Farage stood up this week and outlined his so-called “plan” for immigration, he didn’t sound like a democrat. He sounded like Vladimir Putin. He called for uniformed officers to raid...

Elon Musk is right and Richard Tice is wrong – batteries are the ‘new oil’

Elon Musk is right and Richard Tice is wrong – batteries are the ‘new oil’

by Justin Marsh
August 13, 2025
0

Richard Tice calls battery sites a menace. Nigel Farage brands them a con. Reform-led councils have already put the brakes on projects that could store about six gigawatts of clean power, enough to run six million...

‘There will be an alternative’: Jeremy Corbyn vows to form socialist political party

‘There will be an alternative’: Jeremy Corbyn vows to form socialist political party

by Justin Marsh
August 9, 2025
0

Jeremy Corbyn has issued his strongest signal yet that he will establish a political party positioned to the left of Labour.  The former Labour leader vowed that there would be an “alternative”...

Next Post
The ‘underappreciated’ Caribbean island that mass tourism hasn’t ruined yet

The ‘underappreciated’ Caribbean island that mass tourism hasn’t ruined yet

Popular News

Digital ID can be Labour’s path to smashing the gangs and fixing public services

Digital ID can be Labour’s path to smashing the gangs and fixing public services

September 4, 2025
Meet Colton Herta: America's Newest F1 Star

Meet Colton Herta: America's Newest F1 Star

September 4, 2025
Europe’s 20 cheapest beach towns revealed – golden sand and £33 flights

Europe’s 20 cheapest beach towns revealed – golden sand and £33 flights

September 4, 2025
Daily Mail names first president for North America to lead revenue growth

Daily Mail names first president for North America to lead revenue growth

September 4, 2025
Cross-party MPs publish ‘ready to go’ blueprint for electoral reform commission

Cross-party MPs publish ‘ready to go’ blueprint for electoral reform commission

September 2, 2025
Most gen z drivers feel anxious about using petrol stations

Most gen z drivers feel anxious about using petrol stations

September 1, 2025
Discover Africa’s hidden gem for winter sun – luxury, culture and no jetlag

Discover Africa’s hidden gem for winter sun – luxury, culture and no jetlag

September 1, 2025
UK Herald

All Rights Reserved © UK HERALD - The Voice of UK

Important Links

  • Publish Your article
  • Editorial Policy
  • Contact
  • Advertise

...

No Result
View All Result
  • Home
  • Politics
  • UK News
  • Business
  • Science
  • National
  • Entertainment
  • Gaming
  • Sports
  • Fashion
  • Lifestyle
  • Travel
  • Health
  • Food

All Rights Reserved © UK HERALD - The Voice of UK