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Julie Wilson-Dodd: Digital transformation at Parkinsons UK
Episode 225th November 2022 • The King’s Fund Embracing Digital • The King’s Fund
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Julie Wilson-Dodd oversaw a period of digital transformation at national charity Parkinsons UK. From needing to take everyone at the organisation on the digital journey, to embedding a culture of innovation, she shares experience and guidance with The King's Fund's Sharon Jones.

If you enjoyed this podcast, you may also be interested in our Digital health and care congress 2023. The event will explore how to successfully adopt digital solutions in health and care and the practical realities of implementation. Find out more here: Digital health and care congress 2023 | The King's Fund (

Julie Wilson-Dodd's digital change consultancy is at



Hi, I’m Sharon Jones, Head of Digital Innovation at the King’s Fund, and I’m delighted to be speaking to Julie Wilson-Dodd about how she transformed Parkinson’s UK during her time there as Director of Transformation. Can you tell us a bit about your remit when you joined Parkinson’s UK? What kind of state was the organisation in and what was the approach that you took to change?


I joined Parkinson’s UK a bit over five, six years ago with the title of Director of Digital Transformation with a remit to look at how the organisation was operating in terms of culture, ways of working, its technical infrastructure and how it used digital technologies and data. The role transformed over time to just being Director of Transformation, losing the ‘digital’ word, and I can come back to why that was, but yes, a really broad remit.

In terms of the state the charity was in, it was probably quite familiar in terms of it had a really passionate workforce, hundreds of people doing really important work across service delivery, research, advocacy, but not necessarily operating in the most modern ways. So people who didn’t necessarily have the right kit, who weren’t necessarily thinking about whether they were delivering the most efficiently, whether productivity was as high as it could have been. So, yes, it was an organisation in need of modernisation.


So what did you find were your main challenges when you first started that role?


Coming into a role like Director of Transformation, I was bringing ideas about the kind of things I thought the organisation might have needed, but I rapidly learnt that I needed to build trust. Anyone coming in with a change word in their title sets off some emotions, some excitement, some fear.

I rapidly learnt that I needed to really focus on building trust by fixing some of the basics and when I say ‘the basics’, I mean things like internet connectivity, making sure people had good quality devices that just worked for them, rather than them losing loads of time turning on their desktop computers every day. I needed people to understand when I said data-driven ways of working, that wasn’t about everybody getting super nerdy with spreadsheets, that that was about having good quality insight about the people we were trying to serve and about trying to make better decisions.

So I spent quite a bit of time fixing the basics before I could then build that trust to help people come on the journey of bigger change, things that I felt really mattered, like how we could scale the services to reach more people with Parkinson’s.


How do you think you won people’s trust or at what point did you realise, “Yes, this is working. People are understanding my vision and what I’m trying to do”?


The point at which I think I realised people were getting this and they were starting to understand why transformation was so needed at Parkinson’s UK was when I started hearing some of the language that me and maybe some of my transformation peers were using. So I was starting to hear people talking about agile ways of working, I was hearing about cross-functional teams, I was hearing people talk about product ownership. I was hearing people talk about the culture of the organisation, other than just saying, “Everybody’s really nice.” I was hearing more challenge actually. As I got into the role, people felt more confident to say, “Well, I don’t think we should do it that way. I think we should do it this way,” and that was the point where I thought, “Well, it doesn’t matter whether I agree or I don’t agree, we’re all in this conversation together.”


You talked about when you dropped the digital side of things. What was the reason behind that?


Yes, the organisation, as I said, brought me in as Director of Digital Transformation and I had been somebody who had been a real advocate for digital. I talked about it, I done conference talks about it, and I found actually over time, it had become a barrier for some people.

Some people put assumptions on it that were completely fine and workable. They thought it was about digital products. That was fine. Digital services, that was fine. Digital health, that was fine. Digital marketing, that was fine, but for other people, it was about the problems they experience with their software or hardware. So trying to explain to people, “Well, digital isn’t really about those things. Yes, technology is part of the change that we are trying to bring about, but this is really about responding to changes in the outside landscape. This is about the fact that there are far more people with Parkinson’s than we’re able to serve right now, even though we say, “We’re there for everyone affected by Parkinson’s.”

So getting into conversations about digital and constantly explaining that, “No, no, this is about responding to the digital era as an organisation and modernisation,” started to feel like a bit of a waste of time, when actually the conversation was about, regardless of whether it’s technology or culture or process, what we need to do is change, and change faster so that we can be there for more people with Parkinson’s.” That became a much more straightforward conversation.

We were still talking about how to do the change, but people got over that fear, particularly for some of Parkinson’s UK’s advisors who had been working, and our social care workers, working really closely with people with Parkinson’s and their families and loved ones, that real fear that they were going to be replaced with robots. One of them even said that to me, because the word ‘digital’ was looming in their minds and they couldn’t get over that fear. Once we started talking about change, it didn’t make it always a straightforward conversation, but change that was about driving scale and reaching more people and being there for as broad a range of people with Parkinson’s as possible, that got us over quite a big hurdle.

We moved from having a leadership team that I brought in that had a digital supporter engagement management, a digital product and delivery lead, a digital health lead to those roles transitioning to being the head of supporter engagement, the head of product and delivery. That felt quite a natural progression over time as people understood that this was not about magic tech to fix or break things. This was about the journey of modernisation the organisation was on.


That’s really interesting. Thanks for sharing that with us. What surprised you along this journey?


Lots of surprises. I learnt an awful lot, and I would say I learnt as much from my failures as I learnt from my successes there. You know, you hear a lot of the mantra of, “Oh, fail fast.” It’s surprisingly hard to help people, including me, feel okay with things not working, but I was really surprised to find the things that did take really well. So the word ‘agile’ is quite Marmite for people. Lots of people really don’t like it, lots of people do like it, and it can be a bit of an internal battle.

What I found was we stopped using the word ‘agile’ as well and started talking about data-driven iterative ways of working, testing and learning, experimentation, taking ownership of the products and services that were in your area, and people really got behind that kind of iterative, rapid test and learn. We adopted a culture of experimentation a lot faster than actually I’ve experienced it working with other organisations, and that was a really pleasant surprise.

In terms of other surprises, maybe there was something less positive about the dynamic working with HR. I really believe that transformation and HR are fundamentally linked. It’s about the culture of the organisation and the organisation’s people. There is no change without people. Your people have to go with you and they have to be part of that and they have to be involved.

I think I hit quite an early surprise working with lovely HR colleagues, but who really didn’t see that their role was also about change. They weren’t prepared in the early stages for the amount of asks I was making of them in terms of, “Right, well what’s our joint skill and personal development, like professional development plan work that we’re going to do? What is it that we’re going to do in terms of raising questions about, you know, do contracts need to change so that there is a greater understanding of working flexibly? Do we need to be looking at our values together so that we are all moving together in the right direction with a shared language?”

We ended up doing great work together on a new set of values that included a value that was about being pioneering. It was really true to the organisation and its community, this kind of pioneering spirit, but it also really helped support the transformation agenda by being able to say to each other, “Well, are we being really pioneering in how we’re approaching this, or are we just doing the same old stuff?” “Right, okay, well what would be a more pioneering approach?”


That’s really exciting, and I wanted to ask you, because it feels like this is a narrative, people need to be part of this journey, and you’ve faced some challenges with various functions. So how did you bring them into that part of that journey so they could see themselves in this transformation?


Yes, I mean a lot of it was about spending lots of time. I’m a great believer in lunch and coffee as a way of really getting to know each other and learning what it is that is going to be of mutual benefit. So really getting into understanding what the Director of the Organisational Development’s drivers were at that point in time, what it was that she was worried about, so that I could really frame and tailor the work I was doing to help support her goals as well as mine. She and I developed a really strong partnership around that.

It was the same with multiple different stakeholders sometimes, board members, you know, working with colleagues in all sorts of different teams to understand what it was that they needed, not just what I wanted to get done and what my teams wanted to get done. That was really at the heart of the success of the change work partnership. I might share an example of how some of this change came to life if that’s useful.


Yes, absolutely.


So this was a couple of years in, after we’d done a lot of the 'fix the basic stuff', built that trust, built some understanding about why this transformation programme was even happening, why it was about culture and ways of working and not just some shiny kit or whatever problems people have got with their Google account that day. Once we’d got past the basics, the next key thing was working out which of the big problems we wanted to solve.

We did a small piece of insight research looking at the difference between the amount of people with Parkinson’s we were able to serve through our direct services. So that was helpline, local advisors, online forum, lots of online and offline content, relationships with healthcare professionals. So looking at how many people we were able to serve in any given year versus the overall population and the need within that population.

What we found through that initial piece of research was that we were only really able to serve up to 30% of the demand at any given time, and that’s a position that I think lots of health charities find themselves in. That they aspire to being there for everyone, but when you’re, kind of, 400, 500 staff, even with a network of, you know, 5,000 volunteers, you just can’t be there for everyone who needs you, and people aren’t aware that you exist. So even if you could be there for them, they never discover you.

Those were really critical insights and we decided to really focus our transformation efforts on that problem. How can we scale to be there for more people with Parkinson’s because frankly, no-one else is. We set about that challenge by putting together a cross-functional team, and I’m such an advocate for structured collaboration in organisations as the answer to solving big thorny problems.

We brought together a team with some of the service advisors, so some of the local advisors, some of the helpline advisors, some of the service managers, our, kind of, healthcare liaison lead, alongside a content designer, a product manager, a service designer, a user researcher. We put them together, initially in too small a room in the main office, and then, over time, as COVID hit, working remotely, and set them the shared goal of this problem, how are we going to scale to be there for more people, starting with how are we going to reach people in a timely way so that they know we exist. That team went on to challenge through a series of discovery sprints and prototyping first and then build sprints, testing and iterating as they went. They challenged organisational misconceptions, organisational wisdom that exists in the organisation, “Oh, healthcare professionals will never really refer people directly to Parkinson’s UK. The best we can ask is that they’ll just hand out a leaflet.” No. Wrong.

It turns out, if you provide a really easy online form with good rationale, deal with NHS data sharing standards, do that work, healthcare professionals, those diagnosing consultants, the Parkinson’s nurses, they are desperate to refer people onto a source who they know they can trust to be with people on their whole journey in a way that they can opt in one or two fifteen-minute appointments a year.

So we set up a mechanism for people to be directly referred into Parkinson’s UK, with their consent, and, you know, that’s not just a person with Parkinson’s. That’s a loved one, somebody who’s close to them, often their partner, and then to be there with them ongoing with a personalised, tailored set of content, information, tools that saw them through from that really scary early diagnosis stage when you don’t know really what’s going to happen, through progression with the condition, through the ups and downs of Parkinson’s. It’s neurodegenerative, but it’s not predictable in terms of that neurodegeneration. So helping people move through those moments of problem, coping, struggling through that, and right through into when you really need to advocate for your rights. When you really need to plan ahead because it’s neurodegenerative, there’s no cure. We need to be upfront with people about, at some point, we’re talking about end-of-life scenarios and helping people prepare for that as well.

So it was a big success story. It really shifted how a lot of workers at Parkinson’s UK saw the work that they did. In fact, some of the service workers have said it’s transformed their careers. It’s created a raft of service designers, some of whom have gone on to be very successful in other jobs, paid a lot more than they were, you know, in whatever role they came into Parkinson’s UK, as in like a volunteer manager. Yes, it’s really shifted the internal culture again because we were really focussed on communicating that work and how it was happening. So there were show-and-tells every couple of weeks, just that anyone could join, from trustees, through to advisors, through to the finance team, to understand not just the project and how that was working, successes, failures as we went through, but also why that way of working was so impactful.

So, yes, there are now multiple centres across the UK referring people directly into Parkinson’s UK. There’s a long list of demand for centres that want to sign up. They’re still in a beta phase. They’re trying not to open it out to everyone whilst they still test and learn about what content and tools people need after they’ve been referred in. Yes, it’s provided a mechanism for Parkinson’s UK to be able to say, “Yes, we can be there for everyone affected by Parkinson’s for the first time.”


That sounds incredible, and it sounds like that way of working was fully embedded as just, like, a given going forward. Do you think that your colleagues there even remember how they used to work, even though you had those challenges at the beginning?


That involved a large amount of the organisation. There was all sorts of work going on across the entire services division, but there were still areas of the organisation who hadn’t gone through that change. So the research arm, for example. They’d been doing small cross-functional team projects, you know, trying to get participant involvement, campaigns tied together with other areas of the organisation, so they weren’t working in isolation, but there was still a journey, and there probably still is. You know, I left a short time ago, but there probably still are teams familiarising themselves with those ways of working, but we did see the pattern replicate itself on fundraising and engagement campaigns. They were delivering far greater results as a product of working in cross-functional teams together as well.

Yes, I hope it is now entrenched in the culture there because it had such obvious and easy-to-evidence impact, but yes, it took a long time for, I think, people to recognise the impact of that shift, those kind of ways of working because they take a while to set up. You have to work outside the silos that people are used to working in. Silos are really entrenched and unless you work hard to design and then basically force people to work in a new way by saying, “This is how you're going to be working for the next three months, six months, nine months,” people will just go back to doing things how they did them before, even if they think those aren’t the right ways of doing it. We’re creatures of habit.


Yes, absolutely, and if you were to do it again, what would you change?


I would bite off less. I definitely tried to do too many things in my first couple of years there. I tried to fix too many problems. I wanted to prove that change could happen at a pace that I think wasn’t really sustainable in that first couple of years.

We set up things that I probably didn’t then have the energy to continue. Like, we set up an innovation lab and we did some really good work in it, but then that needed handing over to somebody to manage, and at the same time, we were fixing a load of infrastructure stuff and we were working on new values. You know, it was a lot, and it was a lot of change for people to go through. Even when you're involving people really well, there is change fatigue because it’s not people’s only job usually, you know, embedding new values in the way they do their work. I probably could have been a bit more patient with it.

So, yes, I think that’s the main thing I would change. I would maybe just slow down and do slightly fewer things each year, albeit we got an awful lot done in the five years I was there.


Oh, that’s brilliant, and now that you advise organisations on their transformation journeys, what are the common themes that you see time and time again?


It’s really often about skills and confidence. So, often, people will come to me to talk about particularly skillsets – that might be service design, that might be product management, that might be data strategy, that might be modern marketing and engagement, that might be modern organisational development and organisational design – but usually, the point they’re starting at is, “Oh, we need to up our skills.” Usually, what I find is there’s people in the organisation who do have those skills to some degree, but they don’t have the confidence and the voice in the organisation to really influence well.

So as well as building skills, which is key, it is often about identifying the internal coalition of the willing. The people who do have some of those capabilities and they just haven’t been given permission, and then adding one or two people. I often find when I talk to the charities and non-profits I work with, they just need a couple more people who have been there and done it before, who can then go in confidently and say, “No, don’t worry. This is how it’s going to work because I’ve tried it and this works,” and just one or two people, probably in roles like yours, Sharon, where you’ve got this expertise and you’ve got a remit to influence and teach others how to do things differently, make a really big impact.

The other thing is a constant conversation about whether HR is an aid or a blocker in terms of change. So saying that you need to bring in somebody with a slightly different skillset, if it immediately bumps into a load of processes and policies and recruitment issues, basically, that’s slowing your whole change programme down. So working out how to establish relationships with HR early in a way that is, again, mutually beneficial, that everybody understands why HR needs to be involved in any change programme, that’s something that comes up a lot.

I think the third thing that comes up with quite a lot of the organisations I work with is about that cross-functional teams working on shared goals piece. So organisations will come to me with a problem that they’ve got, and often the heart of the problem is that the right people aren’t working together. There will be one team over here desperately trying to get something done, and another team working over there on a related problem and they’re not working together. So helping organisations take a step back and say, “Ah, can we put our teams back together outside of the department team, budget structures that they’re currently stuck in, in a way that might help them focus on that shared goal and make faster progress?” That’s often where I’m finding the work needs to happen.


I’ve picked up on your use of the word ‘language’ quite a lot, the language of change and language transformation to help people grapple with it. Could you talk a bit more about how you maybe took more technical words and softened them so people could get their heads around it?


Sure, and in this conversation, I’ve used the word ‘change’ quite a few times, but I would say I very, very rarely use the word ‘change’ in my role as Director of Transformation. I did talk about transformation. For some, it’s less frightening than the word ‘change’, but as far as possible, what I and my wider leadership team tried to do was be specific.

So I think I talked a bit about agile and people don’t necessarily like that word, some do, but people are much more okay with talking about iterative and test and learn and experimentation, and then there’s a degree to which you can teach people some new language. People can get into the idea of a backlog and sprints. Those kind of things aren’t too difficult to learn, and a bit of that more, kind of, technical, unfamiliar language is useful.

When we introduced other skillsets around product management, that was one where there’s a temptation in organisations to want to soften language too much, and got into odd conversations about, “Oh, do we call it a product manager? We don’t have any product managers. Could we call it a project manager?” and having to explain, “No, a product manager is a different thing to a project a manager, and we won’t be able to recruit if we call it anything other than product manager.”

So with this balance in language between, right, here is some unnecessarily jargony stuff that we can just avoid and talk to people about in just plain English, and then some other language particularly around recruiting roles and building particular skillsets, like product or service design, where we needed to explain, “Well, this is what design thinking is and this is why it’s called design thinking.” That just became a conversation, and I guess that’s the most important point about language, listening to the language that people were using and working out, “Right, this is a time where I want to teach you some new language and this is a time where I’m going to bend the language that I’m used to working with in my transformation land to something that’s a bit more human.”


That’s really interesting, and what three key things should people be thinking about when it comes to transformation and how can they play their part, regardless of what area they’re in?


So I would say one of the things that I did struggle with was people when they liked the idea of transformation and digital transformation, then often went onto be like, “Great. So you’ll be getting on with that and I’ll carry on with my day job.”

So what I would say to anyone in any organisation, whether you're in finance or research or funding or fundraising or comms, wherever you are in an organisation, whether you’re in the executive team or you are a brand new starter straight out of uni, ask the questions about, “Are we doing this particular thing I’m working on in the best possible way?” If there is any sense that the answer is, “No, there might be a better way of doing it,” whether that might be a better process, a better tool, a better collaboration around it, a better partnership, then don’t just let that question go. Dig into how it can be better because everybody is responsible for organisational change and transformation.

We work in non-profits because we care about the mission, all of us, and we owe it to the people that we’re doing our missions for. In my case, it was people with Parkinson’s, in the King’s Fund, it’s really a wide range of healthcare audiences. We owe it to them to be doing our absolute best at all times. So everyone asks the question, “Is the work you're doing being done in the best possible way?” and, “Could you learn to do it differently?”

Secondly, I would say take responsibility for your own skills and your team’s. If you feel like there’s a skillset missing or there’s professional development that you think your team would really benefit from, champion it. Go and find out where you can get those skills and if it costs money, then get into conversations with your learning and development team about the priorities for this year or next year around how you’re going to upskill.

Organisations needs to be constantly investing in helping the workforce continue to modernise and move with the times with their skills, and you can’t just hope that that will happen, and it’s not just, you know, send everyone on a one-day training course and it fixes it. It’s a constant commitment to professional development that people can champion themselves and that organisations need to support.


It feels like there’s a sense of ownership for people, that they can be part of this transformation. It’s not something that’s being done to them and that’s where sometimes the tensions can lie. What would you say your final and third piece of advice would be?


I think my third and final piece of advice would be to, kind of, look up and look out. We get really involved in the business of what’s going on in our own organisations. I certainly did when I was at Parkinson’s UK, and it’s easy to forget to look out at the wider world, and that’s looking out at what’s going on with your key audiences, how are their lives changing, what is it that they need from you, but it’s also about what are the innovations coming down the line? What are the opportunities to do things differently, because it’s amazing what you learn from just looking at what others are doing or what other new products, new services, new culture initiatives are out there. You can really speed up and accelerate the change work that you’re doing by learning from others.

So I’m always an advocate for, you know, get out there, look outside. It’s why it’s great that you’re doing this podcast series because, you know, not necessarily listening to me, but listening to other experts, it brings fresh thought and I always think that that’s really valuable.


Yes, definitely, I agree. I think it’s really important to go outside and see what else is happening, what people are doing and how you can take something from that and bring it into your own organisation in your own way, but that’s just been really insightful. Thank you so much, Julie, for joining us, and thanks to everyone listening. I hope you found it useful.

This is just one of the series of in-house podcasts for the King’s Fund, all about various aspects of digital workplace transformation. Bye for now.