A Parky Charter Update...

By Mark Mardell

Our Parky Charter seems to be a raging success, but we still need your help to turn wishes and promises into cold hard fact. 

With an election campaign underway and season three at an end * it seems a good time to update you all on our campaign. The short version is that some of those who matter the most seem to have gone much further in accepting our case than we ever expected, but this is the beginning of a long hard slog, not an end, not a climax. 

The thrust behind it all is obvious – to improve the way those of us who have the condition are treated. To do that we have to grab the attention of people in general but in particular those who make the rules and set the guidelines for the NHS. That means the politicians.  And there’s pretty solid evidence they are taking notice, and even suggesting they’ll do something about it. We’ve come a long way from simply moaning in the pub, although we still do that as well.

There was an initially positive reception from ‘the community’ although there were worries about competing with other conditions and the over ambitious access demanded in the “Parky Passport”. One correspondent did castigate us for content, written style, font, graphics, and general approach. Jeremy would have a ready phrase for him, I’m sure.

While the charities, Parkinson’s UK, Cure Parkinson’s, and SpotlightYOPD don’t necessarily sign up to every single word, they’ve been extremely supportive and we hope we have acted as a sort of a spearhead for their campaigns.

It seems an age since we all staggered up Downing Street to the door of number ten – whoever makes it their home after July 4th can expect a repeat performance sometime.

We got masses of publicity out of that visit on World Parkinson’s day, not least because Jeremy went dramatically off message saying Parkinson’s “may not kill you but it will make you wish you hadn't been born."

Many of you didn’t like that, and while I don’t personally feel that or agree with it, it is a strong reminder that we Movers and Shakers all have our own ideas, are fiercely individualistic and don’t have a party line or any agreement on what we ‘ought’ to be saying. It's also a reminder that depression is a common symptom, and people who are depressed often do feel like that.

But the anarchic nature of our gang of six makes it all the more remarkable that we do all agree on this five-point plan. Of course, when that heavy black door swung open, the box of signatures** was taken from Jeremy’s hands by an amiable doorkeeper, not the Prime Minister who had declined to meet us. That prompted Sir Nicholas to write another letter asking to see him. The PM wrote back :

I greatly appreciate the work the Movers and Shakers group are carrying out to raise awareness and improve support for people with Parkinson’s disease. - Rishi Sunak

The letter singled out the NICE guidelines on timely access to Parkinson’s medicines, NHS England’s RightCare programme’s Progressive Neurological Conditions Toolkit and their  Getting It Right First Time programme as evidence of progress. Rishi Sunak added:

“The Government is committed to improving outcomes for those with Parkinson’s disease and ensuring they receive the support they need from services so that they can live well with their condition.” We recognise that patients with Parkinson’s disease are among the most vulnerable in our society, and all parts of the NHS strive to provide them with the best care.” - Rishi Sunak

Fine words, as they say, butter no parsnips. Which is why we saw another, private, meeting as probably more important. That with the Health Secretary Victoria Atkin. I was on holiday at the time, but my colleagues thought she was genuinely engaged and interested. Rather weirdly though, neither she nor her civil servants seemed to know how many people in the UK have Parkinson’s, and didn’t appear aware that there is a shortfall in the number of Parkinson’s nurses and neurologists. Shortly after the meeting Rory wrote in his blog :

“Told that the UK ranked 44th out of 45 European nations for neurologists per head, Victoria Atkins turned to her officials and asked them to look into why so few doctors were attracted by this specialism. There were further instructions to look into the shortage of Parkinson’s nurses and the progress of a home based care project in Southwest England, and to delve into the figures for public investment in research into Parkinson’s, which a Freedom of Information request by Parkinson’s UK revealed amounted to a pitiful £6.7 million in 2022.

There was one sobering moment when we found out that the Department of Health did not have figures showing how many people in the UK had Parkinson’s or where they were. Head of Parkinson’s UK, Caroline Rassell said the charity had been obliged to spend a tidy sum to put together an audit of the condition. 'I do think there is something to worry about that we’re being asked to tell them what they should be telling us,' said Caroline afterwards.

Overall, a good meeting, with the Secretary of State giving us an extra fifteen minutes before rushing off to PMQs, and officials staying on to go through some more details with us. What did become clear however, was how much we still have to do to raise the profile of Parkinson’s in government - one civil servant had to be corrected after describing it as a “rare” disease. But the Secretary of State suggested that another meeting in the summer would be a good idea and we left encouraged that our message had been heard and determined to keep up the pressure for better care - whoever is in charge at the Department of Health a year from now”.

Events have, of course moved on since Rory wrote that, and the ‘year from now’ has become ‘next month’. Indeed, many of you will doubtless be shouting ‘what’s the point in seeing that lot?”. The answer is any foot in any official door helps wedge it further open for others to pass through. 

Polls and pollsters got it wrong about Brexit, Trump and the 2017 election, but this feels different and of course ever since the Charter was a mere germ of an idea we’ve been aware there’ll probably be a change of Government, so we’ve been seeking meetings with shadow ministers too.

First up was shadow minister for the disabled Vicky Foxcroft. She had to vote for most of the time set for the meeting so we explained our concerns to her special advisor. They both suggested that something like the “Parky Passport’ was a long term ambition - perhaps using the ‘blue badge’ scheme as a passport to other service for people with disabilities generally. One of our colleagues from Parkinson’s UK made the point that what is needed is a change of culture in the Department of Work and Pensions. In Scotland a new agency claims they “will put dignity, fairness and respect at the heart of everything we do.” If a new Government could make the DWP adopt a similar slogan, real change might follow.

Then we met the shadow science minister, Chi Onwurah, and this time our friends from PUK were joined by Cure Parkinson’s’ Helen Matthews . We naturally focused on point 5 of the charter, ‘quest for a cure’ and I was impressed : the then Newcastle MP (now candidate) was brisk, no nonsense seemed to have a clear vision for the department. We didn’t need to persuade her of the great potential for the economy in developing home grown medical tech and she wanted to know more about our arguments for greater investment in Parkinson’s research.

Before the election was called, we’d pencilled in a meeting with the shadow health secretary Wes Streeting - we’ll have to see if he can still do it during the hurley burl of a campaign in which he’s playing a very big role. Watch this space. I’m intrigued by his call for ‘reformation of the national religion’ of the NHS and the need for ‘radical candour’ about its failings. 

Speaking just for myself, I was struck how many potential overlaps there are between Labour’s health strategy and the Parky Charter. Given Labour’s hugely cautious about making any spending commitments, it’s worth noting the shadow health team have been allowed to make some solid, funded promises which could help with point one ‘speedy specialists'.  First  'busting the backlog' with an extra 2 million operations, scans and appointments in the first year of the new government. Exactly how this money will be spent and how that would impact neurological appointments for potential Parkys we don’t know. But there is a recognition of the core problem

“The failure to train and retain enough health and care staff means the UK has fewer practicing physicians and nurses per person than the EU average”.

Secondly, the "fit for the future fund" which will double the number of CT and MRI scans to ensure early diagnosis. Again we don’t really know what this will mean for Parky’s - if Labour do form the next Government we’ll be keeping a close eye on this.

But what is really interesting to me is their pronouncement: 

The NHS must become a Neighbourhood Health Service as much as a National Health Service – supported by cutting edge treatment and technology, to prevent illness. We will trial Neighbourhood Health Centres bringing together family doctors, district nurses, care workers, physiotherapists, and mental health specialists under one roof. In our reinvented system, patients will get rapid access to a seamless, personalised service from a multidisciplinary team of professionals, who care for them at home where possible.

This could well dovetail with points 2 '"Instant Information” and 4 “Comprehensive Care”. And here a bit of ‘radical candour’ that might help with both 4 and 5 "Quest for a Cure”.

But the NHS is being left behind, because adoption and spread of new technology is notoriously slow and uptake is patchy, resulting in a postcode lottery for patients. For example, several ICSs are rolling out an at-home kidney test that uses a smartphone app to detect patients developing early signs of chronic kidney disease. Using an app on their phone and a urine test kit sent to their homes, it is designed to reduce unnecessary trips to the GP and hospital by encouraging more people to seek an early diagnosis. If this rollout was national, patients across the country would get access to the tech quicker but instead, the company is having to go area-by-area to get approval. 

A lot of this reflects what we’ve been hearing on the podcast from leading academics, doctors and health entrepreneurs - the need to focus on individual patients, the need for a multi disciplinary approach and the need to cut through red tape to enable greater uptake of the latest tech. All this raises the thought that it is one thing to point out solutions but it is quite another to implement them.

If there is a change of Government, it will be our jobs to see how this all applies to Parkinson’s and watch closely to see how much a new administration can achieve while finding its footing on a burning deck.

So the campaign for the charter maybe at a new beginning, and we have some great (for which read crazy, mad) ambitions - plans to raise the Parky profile, and get more signatures on the petition.

Once again, watch this space but here’s a teaser.

If you follow us you might be aware Gillian wakes in the small hours fit to burst with artistic ideas. When she’s not painting her downstairs loo with alpine scenery, she’s tossing off new verses and re writing old ones with a talent that leaves me reeling. ***

A few months ago she had a marvellous idea that delighted some of us, and rather horrified others. Next month we attach the electrodes, throw the switch and her ambitious project will come roaring into life. I use this imagery deliberately because, like Frankenstein’s monster, this thing is growing and growing into something bigger and more scary than any of us ever conceived . It has already been through as many ch-ch-changes as the thin white duke himself.  We’ve abandoned the glitter ball, the roller skating disco and outraging our more dignified colleagues with demands that they shake a leg and cut the rug. So no murder on the dance floor - instead we’re learning new words to an old tune, and waiting for Paul in a hall. If, no when it happens it will be -er - quite a thing. You’ll want to watch, listen, petition and participate. 

*Our mini series, on interesting people with Parkinson’s, begins next Saturday the 8th June.

** The petition currently stands at 23,283 signatures

*** My nights are less productive but, in a shameless piece of self promotion I urge you to buy a copy of "Words from the Wall", Poets with Parkinson’s.