Our Campaign for 2026

We’re launching a major new campaign on the voice and speech therapy in Parkinson’s.

If you’ve listened to the podcast, you’ll know why. If you haven’t, please do — and then read on.

The voice and Parkinson’s: why I’m taking the pledge

For me, the worst symptom of Parkinson’s isn’t the pain in my legs, the slowness, or the difficulty walking, it’s the quietness and weakness of my voice.

Losing my normal speaking voice has had the greatest impact on how I feel about myself. It makes me feel diminished — lesser than the man I was. Calling it a “symptom” almost feels dismissive. For many of us, it’s as serious as an illness in its own right — a genuinely life-changing injury.

That’s why I’m so glad we’re campaigning on the voice this year — even though it wasn’t my idea. As you’ll hear in the podcast, the final push came from Mark Cripps — “Crippo” — who we met when we were struggling to get our campaign over the 100,000-signature line. He has Parkinson’s too, and he helped us see that what we needed wasn’t just passion, but a strategy. He’s been our hidden partner — the fifth Beatle, if you like. This is how he persuaded us:

‘My Father, a once confident and persuasive orator, had PD and suffered from it – it broke my heart to see and hear him struggle to communicate. I’ve seen many other PWPs get frustrated and increasingly isolated by it. And I’ve started to notice my own voice getting quieter.  So much so that I asked my GP for a referral to an NHS Speech & Language Therapist (SLT).  He laughed “I suggest you go Private – there’s a national shortage of SLTs … the waitlist is years before you will get to see one”.'

The aim is simple to state, even if it’s hard to deliver: proper funding for speech and language therapy, enough training places, and far better retention of experienced therapists.

On paper, things may look adequate. In reality, there simply aren’t enough specialist therapists to do the job properly for people with Parkinson’s — and when people reach senior levels, too many leave the NHS for private practice or leave the profession altogether.

This campaign will be different from the 100,000-signatures push. That had a clear target and a clear outcome. This one will have stages, and success will be harder to measure — until the day the government properly funds speech and language therapy. That’s the end point. In the meantime, there’s a lot we can do.

On Saturday straight after the podcast went out we had  a message from Parkinson’s UK warning us that Gateshead were cutting their service - so sign the letter to make them think again.  

That’s one thing you can do right now. Some local groups already do brilliant things — subsidising speech and language therapists, running singing groups, karaoke sessions, voice classes. My local branch does exactly that. We need more of it.

But this isn’t just about groups. It’s about individuals too. I’ve had speech and language therapy. I’d like more, but I don’t think it’s available. What is available is practice — and I haven’t been doing it. Most guidance says ten to fifteen minutes a day. I haven’t done that for months. So I’m starting again. A bit every day. Ten minutes will do.

And here’s the ask.

• What does your local group already do around voice, speech or singing?

• What could it do?

• And if you’re an individual like me, whose voice is affected, would you be willing to make a daily pledge to practise?

• Just to reassure you: all the other ideas you heard in the podcast are still very much in play. We intend to keep pushing on everything from increasing the number of neurologists to my idea about making wearables freely available. But a major theme that came through was the need to involve people — to get people actually doing things for themselves.

• If you’re happy to share, please contact us. We’ll pull ideas together and work out what comes next.

This campaign only works if it belongs to all of us.

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