Stephen at the MND clinic

Victory for people living with MND in Suffolk

Stephen Gardiner shared his MND story – and helped win funding for a life-changing new post.

By the time I was diagnosed with MND, two years after my symptoms started, I’d already guessed what was wrong. I’d had to stop working, and I was struggling to get up and down the stairs.

When we went in for the appointment, the neurologist just told us “I’m afraid it’s MND.” I asked him, “So I’ve got as

“We hope the post will make a difference for other people living with MND… Now there’s someone to talk to straight away.” Stephen Gardiner

long as I’ve got, then?” and he said “yeah, basically.”

That was it. We weren’t told about the MND Association and we left being told we would get a follow up appointment. After three months, we still hadn’t heard anything, so we phoned up and were told we’d have to wait another three months for a space at the clinic.

That’s when I teamed up with Liz Cooper. She’s the MND Association’s Regional Care Development Advisor in my local area. Her role is to offer support to people affected by MND, as well as work with local health and social care staff to educate and improve services. She also works to raise awareness.

Liz was shocked to hear how we’d been left alone and we agreed people with MND deserve better support after diagnosis. She’d been pushing the NHS funders in the area to pay for a specialist MND support role for 6 years.

I wanted to help, so I told my story at a high-profile meeting with the Ipswich and East Suffolk Clinical Governance Board.

The good news is that, at this meeting, Liz’s efforts paid off – and in April, Kate Barber, East Anglia’s new MND Co-ordinator, started work. She’s already made an incredible difference.

Now, there’s someone to talk to straight after a diagnosis. Nobody will have to be told ‘see you in three months’. And Kate makes sure you’re seen by the right people, right away, from speech therapists to dieticians.

My story helped convince the funders, but it was Liz’s tireless work – made possible by all your gifts in the past – which got us here.

The diagnosis won’t change. But for people living with MND in our area, the future will be a little easier. That means something.

Please send an extra gift today, and help us fight for better MND support all across the country.

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