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.
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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.”
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