At Parkinson’s UK, we’ve got a challenge ahead of us.

More than 145,000 people in the UK are living with Parkinson’s, a progressive neurological condition that turns lives upside down, leaving people’s futures full of uncertainty. That number is set to increase by a huge 20% within the next six years.

And the big challenge is that our direct services, providing support to thousands of people and their loved ones across the UK, are unable to scale to reach this demand. We’re already struggling to be there for everyone that needs us.

Alongside this, we know the world is changing. User expectations and behaviours are changing and people are looking for support in different ways.

How we operate as a charity is changing too. Technology presents us with a huge opportunity for us to be more efficient, more data-driven, more effective, and that’s exactly what we’re striving for at Parkinson’s UK. Many of you will know this scale of transformation isn’t easy, but absolutely crucial to ensure we’re fit for a future in an increasingly digital world.

So, we’re rising to this challenge and redesigning our service pathway for people affected by Parkinson’s. Our ambition and vision is big.

  • We will connect with everyone from the point of diagnosis
  • We will design services that provide integrated online and offline support
  • We will offer improved support to people with more complex needs
  • We will provide a more personalised and tailored experience to meet individual needs
  • We will empower people to live well with Parkinson’s
  • We will develop a clear offer for family, friends and carers

We’re starting from a great place. We already deliver successful and valued direct services across the UK to up to 50,000 people each year and have skilled and dedicated teams across the UK committed to meeting growing needs, complexity and numbers. Those people will be core to this transformation, bringing their skills, knowledge and endless amounts of passion and energy for what we do.

It’s about people

This isn’t about technology. It’s about people. So, we’re taking a people-led approach with people affected by Parkinson’s at the heart of it.

We’ve brought together a team from across the organisation — people who have been delivering our frontline services, people living with Parkinson’s, digital and data experts, people who work with the NHS. We’ve ‘seconded’ into this team two specialists from our partner FutureGov to provide expertise in service design and user research.

As part of the team, we also have senior leaders across service delivery, finance, HR, fundraising, IT, communications, etc. People who will ensure we’re creating something scalable, embeddable and sustainable.

Crucially, we have the backing and buy-in from our Senior Leadership Team and our Board of Trustees. All of whom are excited about us working in new ways, the potential of what we can achieve together and the change this will bring about for people affected by Parkinson’s.

Our principles

One of the first things we did as a team was to design our principles. How are we going to work?

Yes this is service design, transformation, innovation, whatever you want to call it. But it’s not happening in a silo. It’s not a digital thing. We don’t even think of it as a ‘project’. It’s about us rallying together as an entire organisation and working with people affected by Parkinson’s to design something that works for them. That really meets their needs.

It’s also about future-proofing us for a new world, ensuring that we can be there for everyone living with Parkinson’s or supporting someone with Parkinson’s, now and in the future.

Personally, I’d be lying if I said I wasn’t a little daunted to be one of the team-leads on this. I feel a huge responsibility. It’s too important for us not to get this right. But I will say I am incredibly proud to be a part of this and I’m excited about what we can achieve.

Follow our journey

We want to share our journey with you — the bits that go right and the bits that go wrong. We’ll be publishing our weeknotes on this channel as well as blogging, tweeting, and talking. If you want to know more, or have any ideas, please drop us a line.

Here we go…

Service design team lead

is looking at how we can reach and provide personalised information and support to more people affected by the condition from diagnosis.

is looking at how we can reach and provide personalised information and support to more people affected by the condition from diagnosis.