Parkinson’s UK’s strategic plan for 2015-19 marked a huge change, enabling the charity to step up into a leadership role for the entire Parkinson’s disease community. CEO Steve Ford explains how a clear, simple plan has come to life throughout the organisation and beyond.

Our strategy was led by our beneficiaries

“One of our badges as a charity is that everything we do is shaped by the views and experiences of people with Parkinson’s, so that was the way we approached our strategy development in 2013 – we had lots of conversations with people. We asked them, ‘What three things would make the biggest difference in your life by 2020?’

“With our board, we grouped the responses into three themes and played them back to the community to ask them if it made sense. The three priorities we eventually developed were: ‘Better treatments and a cure for Parkinson’s’; ‘Access to high-quality services’ and ‘Empowering people with Parkinson’s to take control of their lives’.

“We weren’t talking about ‘strategy’ in corporate speak, it wasn’t something obscure.

“Our staff were saying, ‘We want to get involved; we want to share our views.’ But we were really clear in saying that we wanted to hear from people with Parkinson’s first. And that gave us our starting position.”

Our strategy stepped us up into a leadership role for the Parkinson’s community

“We recognised then that we faced a bigger issue: this wasn’t going to be a strategy for just Parkinson’s UK, the charity – we can’t fix all these problems on our own. It was a strategy for the whole Parkinson’s community, putting Parkinson’s UK in a leadership position. This was a massive change for us.

“The challenges that the community had set gave us a real sense that we had to do things differently. We recognised that while the charity had a number of very positive years since our rebrand in 2010, actually the reality for people living with Parkinson’s was unchanged. Our ‘success’ so far – growing income, higher quality staff, increased credibility with stakeholders – meant that we could challenge ourselves more.

We gathered groups of stakeholders together in different ways. For example, we held a workshop bringing together people from different parts of the research ecosystem to gather a range of perspectives – nothing was off-limits, but we framed questions around the strategic challenges we had identified and used good external facilitators to ensure people focused on working together rather than pursuing their own agendas. Having people affected by Parkinson’s in the room helped too.

“After the events, although we kept in touch with participants, new models were developed and agreed by the charity. We were clear that the charity and our board would use this process to inform our own decision-making.”

“This was an important stage because it gave our strategy much wider ownership than just being something for just our charity. We had a sense of being a convenor or facilitator for the wider community.”

Simplicity is key

“The strategy being clear and simple was really important. People can quickly connect with the key themes. Staff talk to me about the strategy and it feels like something we are doing together which we all own and understand. It is part of our vocabulary and the way we talk about all of our work.”

The CEO should own the strategy

It’s important for us that the CEO owns the strategy: I took a lead role. We shifted the agenda of the senior leadership team meetings to really focus on it for six months.

The board has strategy as a key part of their responsibility. It was a challenge for a group that meets infrequently; we were moving quite fast and we had to ensure that we were taking the board with us. It was an iterative process where we asked them to sign off the next stage, step by step.

“As we develop our next strategy we are thinking of restructuring the board meetings to make this work more effectively.”

Don’t be over-prescriptive at the beginning

“Five years ago, we didn’t set out exactly what tasks we wanted to do. The strategy started to come to life over the next couple of years. It was like we pushed three snowballs off the side of a mountain and they developed a life of their own.

“It involved some reorganisation of the charity. It wasn’t reorganisation for the sake of it, but we were being purposeful about aligning our structures to the strategy.

“Our new research director was more commercially-minded and in 2017 we launched the Parkinson’s Virtual Biotech concept – our own drug discovery and development arm to fast-track the most promising treatments.

“We recruited a clinical director who is a very high-profile Parkinson’s expert. The new Excellence Network brings together leading health professionals so that they can help drive the changes that need to take place in the health service. It’s important to note that this is facilitated by Parkinson’s UK but clinically-led. Its visual identity is similar to ours but not the same to reinforce that this is a new partnership, not a Parkinson’s UK programme.

These appointments were significant and demonstrated that the charity was ambitious, with top people undertaking our work.”

Impact measurement should be there from the start

“It is hard to measure the impact of what we have done. We did have some strategic KPIs, but for the next strategy we are going to build in impact measurement right at the beginning.

“Maybe we were too ambitious in places – there are some aspects that we are struggling to get movement on. For example, I don’t think we fully understood how our activities would have a measurable impact on people with Parkinson’s.

“I think it’s important to set yourself some goals, but you need to make sure you are measuring the right thing.”

Big challenges lead to big ideas

“When we launched the strategic plan, I remember this real sense of excitement and pride in what we were doing – we were showing that here’s an organisation that’s on the move.

“There’s also a sense of, ‘Wow, people with Parkinson’s are setting us really big challenges here. Are we moving fast enough? Are our relationships with external partners right?

“Sometimes it’s almost like we are doing too much. Every idea is a great idea, new initiatives, such as developments in digital, give new opportunities. Things start to take on a life of their own and this is a challenge. We are getting better at evaluation.

“We are now working on our new strategic plan and this is an opportunity to give more focus to what we are doing, consolidating what works with a stronger evidence base to inform our decision-making, combining ambition and realism.”

Check out Parkinson’s UK strategy here

This article originally appeared in Strategy 101, the October 2018 launch edition of our new EP Insights management briefing for social sector leaders. Our aim is to offer a regular, thought-provoking selection of senior-level knowledge and practical advice that CEOs, managers and trustees can make use of to perform their roles more effectively. You can access and sign up for EP Insights at

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