Movers and Shakers: Mailbag

We have reached the end of Series Three of Movers and Shakers - don’t worry we’ll be back soon - and what better way to end than with an episode devoted to you, our audience? We selected a dozen messages from our mailbag which reflected the feedback we got from listeners during the current series.

It has been the evolution of the Parky Charter, a manifesto for better Parkinson’s care, which has been a constant theme of the last few months. The first email out of the bag was on the subject which formed item one on our charter, the need for faster access to specialists for diagnosis and then a shorter gap between appointments with doctors.

“We are 99.9% certain that my husband has Parkinson’s,” wrote Heather Ireland. “Our GP referred him to see a neurologist in July 2023. We are still waiting.

I phoned the relevant hospital to be told there was a 38 week wait - not to get seen, but to come to the top of the list to be offered an appointment at a future date.

Needless to say, due to the increase and severity of symptoms, we have now made an appointment privately.”

When we met the Health Secretary Victoria Atkins to discuss the Parky Charter, we read Heather’s email to her, making the point that it was one of many examples we had encountered of a kind of covert privatisation where people felt they had no option but to pay to meet a specialist.

Mark Mardell chose two emails reflecting contrasting views of the charter. Linda, a carer for her husband, wrote:

“The charter made me cry , everything in it is a must , care for people with Parkinson’s and their carers is so sketchy. Everything is so hard work . Prescriptions from GPs , identifying deterioration with everyone presenting differently is a nightmare. Visits to A&E or admitted on to a ward , nightmare. Perhaps training in the NHS from the top to the bottom of the NHS should be a must.”

But another correspondent, despite the fact that sh said she had been forced by “this infernal disease” to retire at 54 from a job she loved, said she could not support us:

“Every chronic illness around the country is crying out for more cash, more specialist staff, a bigger piece of the cake - even though we know there are already only crumbs left…

So, without meaning to sound rude - your intentions are good but entirely unrealistic.”

It is fair to say we were not impressed by her argument. For too long Parkinson’s has been the Cinderella of medical conditions and if we don’t shout we won’t even get the crumbs of the cake.

Many of us had been sceptical when Nick “the judge” Mostyn proposed an episode on palliative care and making legal arrangements for one’s demise but it provoked some enthusiastic messages including one from a junior doctor Alex, who is a regular listener:

“This week's palliative care episode was my favourite yet….. I felt in your episode you perfectly summarised the worries and preconceptions people often have. Your guests did a great job of explaining and trying to break down what palliative care and advanced care planning are really about. I will definitely be pointing people in the direction of this episode!  A massive thank you for all you do. As a doctor I have learnt so much from your podcast, and it's changed the way I practice.”

But amidst many messages of praise for the podcast Paul found one correspondent who felt something was missing. Naomi is a carer for her husband who has advanced Parkinson’s:

“We all listen to your podcast, but I find myself getting annoyed that only the milder end of the Parkinson's experience is explored in any detail. Can you devote some episodes to the later stages of Parkinson's and include mention of the more severe symptoms in every episode? For example, what tech interventions are aimed at helping those people? What's discussed in their doctors' visits? Do sleep or depression get worse for them?  What type of exercises can they do?

We agreed that this would make a good subject for our next series.

From the beginning we have heard plenty of horror stories about the way the news of a Parkinson’s diagnosis was broken to our listeners - and to some of the Movers and Shakers - by a neurologist. But Neil, an eye surgeon whose career was brought to a premature end when he was diagnosed with Parkinson’s, urged us to go easy on the doctors:

”Breaking bad news is difficult clinical work, emotionally draining, requires sensitivity and patience and the poor neurologist is being confronted by his or her own impotence again.”

Having had to break bad news himself he described what happened when the tables were turned:

“On the day of my appointment there were at least a further half dozen patients in the waiting room, some shaking uncontrollably, another drooling in his wheel-chair where he was writhing with athetoid movements, yet another was spilling his tea which he was trying to drink from a sippy-cup.  All of them had at least one haggard and exhausted-looking carer with them.  All the stages of this wretched disease are on public display in the waiting room and the neurologist has to face this tidal wave of unconquerable pathology week after week.”

An episode focusing on the challenges faced by people with Parkinson’s when it comes to getting their drugs on time in hospital produced a big response. Mary described her struggle to make sure her husband got the right medication:

“As the wife of a person with advanced PD, can I put in a plea for more awareness of the problem that PD sufferers face if they go into  hospital – messing up their medication. Firstly they are likely to need their meds at times other than when the usual drugs rounds happen, and thus are refused their meds when they should have them.”

She said another problem was confusion about which pills to give at specific times - she had twice stopped nurses giving her husband the wrong drugs:

“How many times did it happen when I was not there to stop it? No wonder his brain was all over the place."

Early in the series, we had an episode which Paul had wanted to do for ages about embarrassing aspects of Parkinson’s - the rest of us were not so keen, but it turned out to be full of fascinating stories.

But Jane wrote in, feeling let down:

“Three years diagnosed, the worst thing so far is CONSTIPATION!!  However I was disappointed with this episode because there was plenty of acknowledgement of constipation but not much practical help.”

She did give Gillian an honourable mention for her extraordinary description of one anti-constipation technique but wanted more:

“Please can you revisit this horror of Parkinson’s disease with more experts and tips, as it seems all Parky’s worry about this more than anything else - you don’t need to contribute yourselves!!”

And amongst the bouquets and brickbats, there was a lot of love for one member of the team, sometimes unfairly described as grumpy:

“So glad podcast is back,” wrote Clair. “Love Jeremy he reminds me of my parkie husband, “all these years all the money and they haven't come up with any answers, whistling in the wind,”- Jeremy makes me smile.”

We are now taking a short break before a mini-series we are calling Parkie Profiles -half a dozen interviews with interesting people who happen to be living with Parkinson’s. Then after a pause over the summer we’ll be back in September with a full length series. Do let us know if you have ideas about the subjects we should cover - our email address is feedback@moversandshakerspodcast.com.