Parky Charter: Update

Meeting the minister

The Parky Charter, a manifesto for better Parkinson’s care put together by the team behind the Movers and Shakers podcast, is making some waves. Our visit to Downing Street with the Charter and a petition signed by more than 20,000 people backing it, got plenty of coverage.

But we know that we need to put the charter in front of as many politicians and policymakers as possible if we are to have any chance of improving standards of care. We have been contacting MPs from across the political spectrum and this week we took the Charter to the Department of Health for a meeting with the Health Secretary Victoria Atkins and a number of her officials.

Gillian Lacey-Solymar, Paul Mayhew-Archer, Sir Nick “Judge” Mostyn and I, accompanied by Caroline Rassell and two of her colleagues from Parkinson’s UK, crowded into the Secretary of State’s office.

We had low expectations, bracing ourselves for some Sir Humphreyish warm words about the NHS Long TermWorkforce Plan and how it would be the answer to every problem. But there was none of that. Instead the politician and her officials listened intently as we outlined the deep dissatisfaction with the care they are offered that our Movers and Shakers listeners have told us about over the last year.

With only 30 minutes scheduled for our meeting we focused on just two of our Charter demands - the need for more neurologists to cut the unacceptable wait facing many before they can get a Parkinson’s diagnosis, and for people then to be given access to multidiscplinary teams of specialist nurses, physiotherapists, speech therapists and other healthcare professionals.

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. Caroline Rassell said Parkinson’s UK 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.