Learning from Bereavement: Improving Care for People with Prader–Willi Syndrome

Researcher, Gina Skourti has been talking to families who have lost someone with Prader-Willi syndrome to see what lessons can be learned from their experiences. Gina and our trustee, Dr Anne Livesey, recently presented their findings at the Learning Together Conference.

That message perfectly reflected why we chose to share our research.

Our presentation explored emerging findings from a qualitative study examining the experiences of families bereaved following the death of a relative with Prader–Willi Syndrome (PWS). We know that despite advances in care, people with PWS continue to experience significant health inequalities, and the voices of bereaved families remain largely unheard. We believe their experiences offer invaluable lessons for improving care and reducing preventable harm.

The study involves interviews with 15 families from across the UK. Rather than focusing on statistics, we shared - with his family’s permission - the story of one individual to illustrate several themes emerging from the research.

Key messages:

Communication does not always equal capacity.

Being articulate and socially confident can mask difficulties with understanding, weighing information and recognising risk. This reinforces the importance of applying the Mental Capacity Act thoughtfully, recognising that capacity is decision- and time-specific and should never be assumed based on verbal ability alone.

Families see the whole picture.

Many families described professionals working hard within individual services, but without anyone coordinating care across the wider system. Repeated crises and declining health were often treated as isolated events rather than recognised as part of an emerging pattern. Families frequently held the most complete understanding of these risks and wanted to be recognised as genuine partners in care.

Rare conditions require specialist knowledge.

Families highlighted the challenges of navigating services where professionals had limited understanding of PWS, particularly around hyperphagia, decision-making and the need for reasonable adjustments. Hospital admissions, often viewed as places of safety, could instead become periods of increased vulnerability when syndrome-specific needs were not recognised.

The workshop encouraged everyone to reflect on some important questions:

• Are we mistaking articulation for understanding?
• Are we making appropriate reasonable adjustments?
• Who is coordinating care when multiple services are involved?
• Are families meaningfully included in decision-making?
• When crises keep recurring, are we stepping back to recognise the wider pattern of risk?

Although our analysis is still underway, the findings consistently point towards the need for coordinated care, syndrome-informed practice, consistent application of the Mental Capacity Act, and meaningful partnership with families. While this research focuses on Prader-Willi Syndrome, the lessons extend far beyond PWS and are relevant to many people with learning disabilities and complex health needs.

Most importantly, this research reminds us that bereaved families hold knowledge that can help shape better services. By listening with openness and curiosity, we have an opportunity to reduce health inequalities and improve care for future generations.

As we concluded during the session: learning from bereavement is not about blame - it is about creating the conditions for better care.