Driving Measurable Results Through Strategic Partnership

Harnessing lived experience within professional practice has the potential to transform the way we understand and support people. In Positive Behaviour Support (PBS), where the aim is always to understand the person rather than simply respond to their behaviour, this insight can be invaluable.

At Keys, a powerful example of this comes from the work of Gemma Cuerden, a PBS Practitioner in the Children’s team, whose personal experience of epilepsy has begun to reshape how staff think about health, behaviour and communication.

Gemma has lived with epilepsy since childhood, navigating years of medication changes, side effects and the ofteninvisible impact the condition can have on mood, energy levels and physical comfort.

This personal history sits alongside her extensive professional experience as a PBS practitioner and former service manager, giving her a rare ability to interpret behaviour through both a clinical and personal lens. When a colleague approached her for support with understanding a young girl who communicates non-verbally and lives with epilepsy, Gemma offered to spend time with the staff team to help them explore what the girl might be experiencing internally.

What unfolded was a simple, informal workshop that became unexpectedly transformative. Gemma talked the team through the medications the young person was prescribed and the kinds of physical sensations she herself had experienced when taking similar medicines. She explained how nausea can feel overwhelming, how acid reflux can create an intense internal pressure, how lethargy can descend without warning and how joint pain can shift someone’s mood or capacity to engage.

She shared her own memories of being a teenager dealing not only with puberty but with powerful neurological medication and how those years were marked by emotional volatility that no one at the time connected to her treatment. For the team supporting the young girl, these insights created a new depth of empathy.

Staff began linking patterns they had observed to possibilities they had never previously considered. Incidents of the young girl making herself sick after eating certain foods suddenly aligned with Gemma’s explanation that reflux from medication can be worsened by spice or acidity. Periods of withdrawal or agitation were reconsidered in the context of pain or exhaustion rather than behaviour alone. Moments where the girl seemed unusually tearful or frustrated started to be understood as potentially connected to physical sensations she could not express verbally.

The shift was not in clinical knowledge alone, but also in confidence. Hearing directly from someone who had lived through similar experiences helped staff feel more assured in advocating for the girl. They were able to incorporate new ideas into her PBS plan, including offering more rest after physically demanding activities, monitoring for dietary triggers andplanning for longterm health considerations such as bone density and dental checks.. The team became more attuned to her nonverbal communication and more comfortable listening to what her behaviour might be telling them about her internal world.

Beyond the support of this one young person, Gemma’s contribution highlights a wider issue within the sector. Many people with learning disabilities remain on antiseizure medication for decades without regular review, despite the significant longterm side effects these medications can carry. Unlike psychotropic medications, which benefit from national frameworks such as STOMP and STAMP, epilepsy medication has no equivalent national guidance for review or reduction.

This gap means that some individuals experience preventable side effects that affect their quality of life, and in some cases, may not even need the medication anymore. Gemma’s own journey reflects this; she spent years on a medication that caused profound side effects before finally being moved to one that allowed her to live more comfortably and with far fewer limitations.

Sarah Taie, Associate Director, Positive Behaviour Support at Keys, said: “Keys is fortunate to have practitioners who are willing to share their lived experiences openly.

“Creating spaces where this sharing is welcomed and valued can enrich professional practice, improve health outcomes and nurture a culture of compassion. Gemma’s story offers an important message for the entire field.

“Lived experience – where a person is happy to share this professionally and it is appropriate to do so – can be a powerful tool for understanding people more holistically.. It encourages practitioners to consider what a person might be feeling rather than only what they are doing. And ultimately, it strengthens our commitment to seeing behaviour as communication and responding with compassion.”

The outcome

A more informed and compassionate approach to support, driven by a better understanding of the impact of epilepsy, medication and non-verbal communication.