Rare Minds Workshop

Mental health for adults living with PKU.

In October 2023, I chaired a workshop at the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (ESPKU) conference called Starting the Conversation. The workshop was limited to adults with PKU only, and the packed room was proof that the concept was welcome.

Starting the Conversation was about strengthening the voice of adult PKU in our national societies. My fellow panel member and I wanted a space where adults with PKU felt able to hold an open discussion about managing PKU as adults, and to collect data about adult concerns in real time.

A voice for PKU adults

The workshop used MentiMeter, interactive presentation software, to display questions regarding ageing, the struggles of staying on diet as an adult, careers & PKU, socialising with PKU, and ensuring representation within the national societies. We found three immediate and three long-term areas for national organisations to work on.

The area needing critical support, which could be worked on immediately, was better mental health support. The NSPKU wasted no time in contacting a mental health charity specialising in supporting those with rare diseases — Rare Minds.

The NSPKU wasted no time in contacting a mental health charity specialising in supporting those with rare diseases—Rare Minds.

Rare Minds on Living with PKU

Louise Brooks ran a workshop for adults at the NSPKU conference in 2024. At the same time, Rare Minds ran a workshop on supporting carers for children with PKU. There was a good response, with full rooms for both workshops.

Given the nature of the material, it is difficult to reproduce it. But it will be interesting to see how the partnership between NSPKU and Rare Minds progresses in future events.