Parkinson's:The Commons Debate

MPs support our Parky Charter

There were times on Thursday around noon that I thought I must be dreaming. Surely I was not sitting in the public gallery of the House of Commons listening to MPs from across the political spectrum praising Movers and Shakers, our podcast about living with Parkinson’s, and calling for the Parky Charter, our manifesto for better care, to be implemented?

But yes, it did happen, the first substantial debate about Parkinson’s that anyone in Parliament could remember. The subject was chosen by a Scottish Labour MP Graeme Downie who had first to convince a committee of backbenchers that Parkinson’s was worthy of debate. That he succeeded was really all thanks to one of his members of staff, to whom we will come later.

When Mr Downie stood up to launch the debate there were only a handful of MPs scattered across the green benches, with many away pounding the pavements getting the vote out on local election day. The four Movers and Shakers in the public gallery - Gillian Lacey-Solymar, Nicholas Mostyn, Mark Mardell and me - were at first disappointed by the turnout.

But by the end of the ninety minute debate we were hugely impressed by the quality of the contributions of those who spoke, their understanding of the issues we ‘Parkies’ face and the way they illustrated their speeches with the stories of their constituents living with Parkinson’s.

Graeme Downie set the tone, first outlining all of the important facts and figures about the worlds fastest growing neurological disease, then reading a poem by a campaigner Bobby Coelho asking people to ‘walk in my shoes' to understand the experience of living with this incurable degenerative disease. He went on to examine in detail the Parky Charter which, led by Gillian Lacey-Solymar and in collaboration with Parkinson’s charities, we put together a year ago.

The MP described it as “not a wish list. This is a road map to dignity.” After outlining our five demands, from speedier access to neurologists - many are still waiting more than a year for a diagnosis - to better state funding for research, he said “those are not unattainable dreams. They are basic standards of decency, fairness and evidence based healthcare.”

(I particularly enjoyed the intervention in Mr Downie’s speech by my MP Rupa Huq, proof that lobbying, especially when you have a famous dog, can be effective.)

Other MPs had tales to tell of amazingly resilient Parkinson’s campaigners in their constituencies. Notably, the Ilford South Labour MP Jas Athwal painted a portrait of Jagdeep Aujla, a black belt in martial arts who broke down in tears after hearing his diagnosis but has gone on to raise tens of thousands of pounds for Parkinson’s charities and launched the Dopamine Warriors, a weekly boxing class for ‘Parkies’. (Look out for a Movers and Shakers Parky Profile of Jagdeep over the summer.)

But amidst all the agreement about the need for better care there was some party politics with the Health Minister Ashley Dalton under pressure from both Conservative and Liberal Democrat spokespeople to prove that fine words would be backed up by government action to improve matters.

The Minister praised Movers and Shakers for “doing a fantastic job in raising awareness and advocating for better care and treatment for those living with Parkinson's.” Addressing our key demand for more specialists, she pointed out that. the government had achieved its pledge to deliver an additional 2 million “elective’ appointments ahead of schedule. That was the first step, she said, to delivering on the commitment that 92% of patients will wait no longer than 18 weeks from referral by a GP to seeing a consultant by March 2029.

Two million extra outpatient appointments? That sounds a lot, even given the rising number of people with Parkinson’s. That is because the number refers to additional appointments for all conditions - it seems the government is wary about breaking down the number for Parkinson’s or cancer or heart disease, knowing that every medical campaign group will only be concerned that its targets are hit.

So on this demand and on the question of benefits payments to people with Parkinson’s where Ms Dalton would only say that the government was exploring ways of reducing the need for full assessments for people with serious disabilities, the campaign must continue.

It would be easy to be cynical but we emerged from Parliament excited and energised by what we had heard. We also wanted to congratulate Graeme Downie’s chief of staff Vonnie Sandlan, whose husband was diagnosed with young onset Parkinson’s last year. It was she who told her boss that this debate was needed and she has moved heaven and earth to help make it happen.

Since we started Movers and Shakers two years ago we have had so many messages rejoicing that at last someone is talking about Parkinson’s, the forgotten scourge of so many lives. Now, thanks to Vonnie, the conversation has started in Westminster and we intend to keep on talking about the Parky Charter and the need for change.

You can help by signing the Parky Charter petition and telling all your friends about it.