How the Parkinson’s Service is using Patient Activation to transform care

Personalised care is often talked about as something “we already do,” but when professionals begin to explore tools that genuinely shift conversations, practice can change in powerful ways.

In our podcast conversation with Deborah Whitfield, Physiotherapist and Operational Team Lead at Lincolnshire Community Health Services NHS Trust (LCHS), she shared how the Parkinson’s service is implementing the Patient Activation Measure (PAM), and what it has meant for patients, professionals, and services alike. 

CLICK ON THE IMAGE BELOW to listen to our conversation with Deborah

What Is Patient Activation...and why does it matter?

Patient activation focuses on understanding a person’s confidence, knowledge and skills to manage their own health. The Patient Activation Measure (PAM) uses 13 statements to gauge where people sit on a four-level scale, from “disengaged and overwhelmed” to “highly activated.”

Deborah explains how the tool adds depth to clinical conversations:

“It just helps to give you a bit more depth and understanding… you pick up on things that you think, 'Oh gosh, I wouldn’t have picked up on that before'.”

This goes beyond collecting data: it’s about enabling clinicians to adapt their approach, avoid overwhelming people, and support them in a way that makes sense to them.

Personalisation as a practical, not abstract, idea

The Parkinson’s service joined a cross-Lincolnshire group committed to embedding personalised care in routine practice. What united them was a shared belief in doing what’s within their control to improve care.

Deborah:

“We appreciate that actually sometimes you do need tools and support… we want to make sure that we’re not doing a one-size-fits-all type service.”

Deborah highlighted that PAM helps clinicians move beyond the vague idea of personalisation toward a structured, thoughtful approach that recognises each individuals’ starting point.

PAM as a tailoring tool, not a performance measure

Initially, Deborah, like many clinicians, viewed PAM as a performance measure.

“I was using it more thinking about it as an outcome measure… actually, it made me think differently about what I’m doing with patients and why.”

When some patient scores went down three months after intervention, this prompted deeper understanding rather than concern.

“Sometimes they’ve come back and said, "I didn’t appreciate what I didn’t know… how I don’t have the level of knowledge I thought I had.”

Instead of “fixing the score”, the real value came from the conversation. A drop might signal a new diagnosis, different worries, or shifting priorities - information that directly shapes care.

Deborah reframed PAM as a tailoring tool, helping her decide what patients need now, rather than striving to push people up levels:

“Don’t worry about increasing their score… what does that mean for this patient now?”

Adapting support to people’s activation levels

The clearest impact of PAM emerges in clinical examples.

Level 1: Small steps, frequent check-ins

Deborah describes a gentleman who scored at Level 1 - overwhelmed and disengaged:

“I brought it back really simply… let’s concentrate on these two exercises.”

Knowing he would struggle independently, she offered weekly check-in calls instead of another long appointment:

“It was very much, ‘Hey, it’s Debs, how are you doing?’… by the time he came back a month later, he was doing stuff.”

This approach turned what could have been an overwhelming intervention into something manageable and successful.

Level 4: Stepping back, not stepping in

Conversely, a highly activated patient needed minimal input:

“He knew what he was taking, he knew why… he was a real high exerciser.”

For this individual, a bit of signposting and an open invitation to get in touch was enough:

“I said, You get back in contact with me as and when you need it, and he was more than happy with that.”

This not only respects the patient’s capability but also frees clinician time for those who need more proactive support.

Workforce readiness and real-world challenges

Introducing PAM wasn’t straightforward. Staff were already struggling with demand, and training required time and focus.

“It was a time when people were already really, really stretched… I felt like I was chasing the team.”

Deborah recognised the importance of personalised support for staff as well as patients:

“Some people don’t get on well with self-directed learning… she gets on better having a conversation and a more tailored package.”

By removing pressure, focusing on small wins, and embedding PAM into team meetings, the team gained confidence and momentum.

The Staff PAM (c-PAM) later showed most colleagues were highly engaged:

“Five of our staff came out as high… it was really encouraging.”

This insight reassured Deborah that the team understood the purpose behind personalisation, and were ready to build it into practice.

Using activation to shape services

PAM doesn’t just support individual care - it helps services understand complexity and workforce needs:

“It’s not just about caseload numbers… it’s about complexity, it’s about level of activation.”

Highly activated patients may thrive with patient-initiated follow-up, while others need more structured, proactive support. PAM offers a way to plan services around people, not processes.

Looking ahead: What does ‘Good’ look like?

While Deborah acknowledges there’s still a long way to go, her vision is clear:
PAM should become an embedded, natural part of personalised care.

“I don’t want PAM to be a tick-box exercise… I want it to be part of our bigger toolkit.”

The service is building something meaningful: an approach centered on understanding people, adapting support, and helping them build confidence at their own pace.

And as Deborah puts it:

“Anything worth doing and making a bigger change is going to take a bit of time.”