Don't wait or hesitate - get out there and motivate!
- Mark Mardell
- 12 minutes ago
- 9 min read
Whether we took part in the Big Sing in London or, as I did, in Yorkshire - most of us came away buzzing, excited, exhilarated, full of energy. Just coming together, being together and literally raising our voices for Parkinson’s and making ourselves heard made us feel empowered. Two weeks later we need to summon that feeling once more for the next big push.
For if we ever needed a reminder that we cannot afford to rest on our laurels it came in the form of the government’s response. Now more than ever, we need to get our petition over the line. Only when we get to 100,000 signatures will we get a full debate in Parliament. We are more than a quarter of the way there – as I write 25,417 people have signed and you can check how that has grown by clicking here. While you are about it share with friends and family. More thoughts on how to achieve this at the end -feel free to scroll past my recap and get going!
Why are we doing this? Because it is clear from our post bag that many people with Parkinson’s have been let down by successive governments over a long period of time. We are not asking for special treatment but simply better understanding from policy makers, politicians and the public of our condition and some pretty basic improvements to the way we are treated by the NHS. The demands in our five-point charter are fairly modest – and the first one is simply that the NHS should keep its own promise and that everybody with a suspected diagnosis of Parkinson's should see a specialist within 18 weeks.
That makes it all the more galling that the Labour Government after a good start appears to be scaling back its commitments.
We were pleasantly surprised when Wes Streeting came on the podcast, just before the election, and made some significant promises. Then, that was all he could do, for he was merely the Shadow Health Secretary. Now he is in the cabinet, as Secretary of State for health and social care, he seems far more cautious and apparently hasn’t felt able to repeat those promises when we wrote to him before the Big Sing.
He did at least send his best wishes -eventually. I’d contacted the Secretary of State’s special advisors, passing on a letter from Gillian, asking if he could attend the event in Westminster. If not, could he send a message of support?
I wasn’t holding my breath for him to turn up, and sure enough, a reply came saying he couldn’t be there. So I asked again (and again and again) - would he at least send a message, given the promises he’s made?
It was only as I was speaking on the day itself that I received a reply to my fourth email. It started off well enough...
“Thank you for your letter, and for all the work you do with Movers and Shakers to shine a light on the realities of living with Parkinson’s and show those living with a diagnosis they are not alone. I am very sorry that I cannot join you on World Parkinson’s Day. There’s no doubting the ability of song and music to lift spirits and the soul, even if it is not always in tune!”
So far so good. Even a friendly joke. But then – ‘We all want to see people with Parkinson’s live as well as possible, for as long as possible. That is why the government is actively encouraging research into Parkinson’s and has recently launched the advisory ‘Neuro Forum’ to improve care and support for people living with neurological conditions, including Parkinson’s, across the UK. This will focus on practical steps – boosting the neurological
workforce; upskilling other staff to better provide care for people living with neurological conditions; sharing innovative solutions in terms of new therapies and tech and making sure that patients’ voices can make a difference and shape policy. Over time, I hope that this forum will help us deliver impactful changes, that will enhance the quality of life of those living with Parkinson’s”
All of which amounts to aspirations, rather than the firm promises we’d had before. Here’s a reminder of what he said back in June 2024:
**SPEEDY SPECIALISTS**
- He strongly agreed and pledged an extra 63,000 neurology appointments a year to
clear the backlog.
**INSTANT INFORMATION**
- “I think I can commit to that,” he said.
**QUEST FOR A CURE?**
- “Can I get back to you on that? I don’t want to make an unfunded spending
commitment, but I absolutely take the point.”
**COMPREHENSIVE CARE**
- “I absolutely agree with you on the importance of multidisciplinary teams.”
**PARKINSON’S PASSPORT**
- “More DWP, but I’ll talk to Liz Kendall about it.”
If that was disappointing, what was worse was the response to our petition. We need 100,000 signatures to get a debate in Westminster Hall, but once we had topped 10,000 the Government has to respond. It begins
‘The Government is committed to improving health outcomes for people with neurological conditions, including Parkinson’s disease. Funding provision is subject to Spending Review decisions.
We acknowledge the challenges that neurology services have been facing, particularly regarding the workforce, delays to treatment and care, and lack of information and support that some patients have experienced.’
You can read the rest of their full statement below *, but I can tell you it doesn’t get
any better.
We were pretty disappointed -and we weren’t alone. The MPs on the petitions committee have told the government this doesn’t directly answer our demands and to come up with a better response. From our point of view the statement is an unpleasant mixture of soft soap and hard cheese, mostly vague piffle with the occasional rebuff.
After a lifetime covering politics and politicians, I don’t think I’m unduly unrealistic or naïve about the challenge facing this government. The demands of a modern healthcare system are, in many ways, endless. The NHS, like all health services in countries seeing the rapid growth of ageing populations, becomes a virtually bottomless pit.
When the government declares that the NHS is broken - after 14 years of neglect plus Covid -they should be aware that they need to be seen to be moving heaven and earth to fix it. A series of incremental, minor fixes here and there won’t cut it.
Wes Streeting implies he wants to do this without any extra money. My feeling is:
fiddling with the system only makes so much difference. An assault on easy targets
- like too much bureaucracy and too much management - only takes you so far.
A lifetime of covering politics hasn’t made me cynical. I very much believe in the power of politics to transform things. Personally, I have a lot of time for Wes Streeting and want to cut this Government some slack. You may not agree, and that is fair enough.
But I hope you do agree with me on this: I know how hard it is to judge between competing interests, and I know that making a fuss matters.
Parkinson’s is only one small part of an immense, complex jigsaw. But there’s no doubt it has been a Cinderella condition - ignored while other diseases get the cash and the attention. Until, that is, the charities acted together, and people started to make a noise. People like us, people like you.
The fact that two years in a row we’ve delivered petitions to Downing Street matters.
The fact that Streeting chose to come on our podcast matters. The fact that Graeme Downie, the Labour MP for Dunfermline and Dollar, has won a backbench debate on Parkinson’s, matters. That is scheduled for May 1st, and he would like you all to write to your MPs with your stories and urge them to take part. He also says it is really important to keep going with our campaign for another, bigger debate later in the year.
Slowly, but surely, making a noise, getting noticed, getting politicians and policy makers - as well as the general public - to focus more on Parkinson’s and to understand it more. That is why the petition is vital to keep up the momentum, and your role in this is the key to success.
There have been some inspired suggestions of how to get more signatures –
obviously pester everyone you know to sign, put the link
or
below your e mail signature.
The Bexhill group had the simple but brilliant idea of going along the front with a QR code asking people to sign. They have a stunning 177 signatures so far. Their leaflets look very professional – but a simple piece of paper will do the trick.
I’m still rather obsessed by the map attached to the petition, revealing the number of signatures per constituency. I presume it reflects active and effective groups or individuals – and I feel now some missionary work is needed. Perhaps York Outer (99 signatures at time of writing) and inner (59) could send a few activists to Barnsley (6) or Leeds South (5). Chesham (146)’s singers could preach the Parky good news and save Slough (11). Or what about the people of South Cotswold (93) and Melksham (103) forming a pincer movement on Swindon North (18)?
We’ve got until September 10th - which happens to be my birthday – before the petition runs out of time but I find these days the weeks fly by at an alarming rate so don’t wait or hesitate get out there and motivate!
Here is the rest of the Government’s response:
*Nationally, there are a number of initiatives supporting service improvement and better care for patients with Parkinson’s disease, including the RightCare Progressive Neurological Conditions Toolkit and the Getting It Right First Time Programme for Neurology. NHS England (NHSE) also has a Neurology Transformation Programme, a multi-year, clinically led programme to develop a new model of integrated care for neurology services.
We have set up a UK-wide Neuro Forum, facilitating formal, biannual meetings across the Department, NHSE, devolved governments and health services, and Neurological Alliances of all four nations. The new forum brings key stakeholders together to share learnings across the system and discuss challenges, best practice examples and potential solutions.
NHSE commissions the specialised elements of Parkinson’s care that patients may receive from 27 specialised neurology centres across England. Within specialised centres, neurological multidisciplinary teams ensure patients can access a range of health professionals and specialised treatment and support, according to their needs.
A central part of the 10-Year Health Plan will be our workforce and how we ensure we train and provide the staff, technology and infrastructure the NHS needs to care for patients across our communities. This summer, we will publish a refreshed Long Term Workforce Plan to deliver the transformed health service we will build over the next decade and treat patients on time again. We will ensure the NHS has the right people, in the right places, with the right skills to deliver the care patients need when they need it, including in neurology.
On 6 January 2025, NHSE published the new Elective Reform Plan, which sets out a whole system approach to hitting the 18-week referral to treatment target by the end of this Parliament. We have delivered an additional 2 million appointments between July and November 2024 compared to the same period in 2023, seven months ahead of schedule, as a first step in our commitment to ensuring patients can expect to be treated within 18 weeks. These additional appointments have taken place across a number of specialities, including neurology.
Parkinson’s passport - Benefits, free prescriptions and Blue Badge entitlement:
There are currently no plans to add to the list of conditions that give entitlement to free prescriptions. Approximately 89% of prescription items are currently dispensed free of charge and there is a wide range of exemptions from prescription charges already in place. People with Parkinson’s who are 60 years old or over are entitled to free prescriptions. For those that have to pay for prescriptions, the cost can be capped by purchasing a pre-payment certificate. Additionally, the NHS Low Income Scheme can provide help with health costs on an income-related basis.
The Government recently brought forward a Green Paper on the health and disability benefits system and the support we offer, entitled Pathways to Work: Reforming
Benefits and Support to Get Britain Working -
and-support-to-get-britain-working-green-paper. Within the paper, we consider how to improve the system for those with very severe health conditions and disabilities.
This includes exploring ways to reduce the need for some people with very severe
health conditions to undergo a full Personal Independence Payment functional assessment.
Eligibility for a Blue Badge is not based on the type of disability, and people with physical, mental and cognitive conditions, including those with Parkinson’s, can receive a badge if their disability or condition means that they need to park closer to their destination. Blue Badge eligibility criteria in England were extended in 2019 to include more people with non-visible disabilities to ensure that people with the greatest needs, whatever their disability or condition, all have the same access to a badge.
Research/treatments:
The Government spent £79.06 million on research into Parkinson’s between 2019-20 and 2023-24, with research delivered via UK Research and Innovation and the National Institute for Health and Care Research (NIHR). We are continuing to invest in Parkinson’s research. For example, the UK Dementia Research Institute, primarily funded by Government, is partnering with Parkinson’s UK to establish a new £10 million research centre dedicated to better understanding the causes of Parkinson’s and finding new treatments. The NIHR welcomes high-quality funding applications for research into any aspect of human health and care, including Parkinson's disease. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.
Department of Health and Social Care”
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