Patient Reference Group: terms of reference

Terms of reference for the Patient Reference Group.

Terms of reference

Purpose/role of the group

The Patient Safety Commissioner (PSC) Patient Reference Group was formed in October 2020 to advise the Scottish Government (SG) on the development of proposals for the appointment of a PSC for Scotland.  Once developed, the proposals will be consulted on publically, with the results of this consultation informing the Cabinet Secretary for Health and Sport’s decision on how to progress the appointment.

Members of the PSC Patient Reference Group will represent, and connect with, their wider networks (Mesh, Primodos and Sodium Valproate) to ensure that the views of these wider groups are fed in, and that they are kept up to date, as the proposals are developed.


The full membership list for the group can be found at Annex A.

Members of the group, who were contacted through existing Mesh, Primodos and Sodium Valproate networks, were invited to self-nominate to join the group.  In order to ensure focussed discussions, it was intended that the group would be made up of around 12 members. 


Meetings will only go ahead if there is a minimum of six people (excluding Group Management) in attendance.

Meetings/working methods

The PSC Patient Reference Group will meet virtually as frequently as is felt, by the group, to be required.  In between meetings the group will interact by email, via the group Secretariat (

Members of the group may contribute suggested agenda items and papers for meetings, through the group Secretariat, no later than six working days in advance of meetings. The group Secretariat will aim to circulate agendas and papers no later than five working days ahead of meetings. 

Meetings will be minuted, with minutes circulated amongst the group for comment/clearance within five working days of the meeting taking place.  However, this should be a safe space for members to speak freely, and if a member wishes to keep certain information within the confines of the group, they can request this at the meeting (e.g. if people wish to share personal stories, they can state that these are ‘not for minuting’).


There may be times when group members are given access to sensitive or confidential information.  The chair and/or group Secretariat will make it clear when this is the case, and members are asked not to share this information more widely.

Interaction with other groups

A PSC Specialist Reference Group, formed of representatives from existing organisations with responsibilities around patient safety and patient voice, was also set up in October 2020.  The key aim of this group is to advise on whether any of the proposals put forward duplicate or cross-over with existing processes and structures.  A member of the PSC Patient Reference Group is invited to sit on the PSC Specialist Reference Group, to act as a representative.

Annex A

Group membership 

  • Rona Johnson, Epilepsy Scotland
  • Lisa Megginson    
  • Wilma Ord, Association for Children Damaged by Hormone Pregnancy Tests
  • Vicki Middleton, Association for Children Damaged by Hormone Pregnancy Tests
  • Janet Williams, INFACT
  • Emma Murphy, Fetal Anti-Convulsant Syndrome Association (FACSA)
  • June Greenhorn    
  • Emma Mackay    
  • Sharon Mercado, Scottish Mesh Survivors
  • Nan McGradie, Association for Children Damaged by Hormone Pregnancy Tests
  • Jan Clark    
  • Claire Daisley    
  • Karen Neil, Scottish Mesh Survivors
  • Nancy Honeyball    
  • Marie Lyon, Association for Children Damaged by Hormone Pregnancy Tests
  • Charlie Bethune, Valproate Scotland
  • Susan Cole, Valproate Victims
  • Karen Keely, Organisation for Anti-Convulsant Syndrome (OACS) Charity UK and Ireland

Group management

  • Donna O’Boyle (Chair), Professional Adviser to Chief Medical Officer and Chief Nursing Officer
  • Margaret Syme, Team Leader, Scottish Government, Safety, Openness and Learning Unit
  • Anncris Roberts, Unit Head, Scottish Government, Safety, Openness and Learning Unit
  • Nicki Crossan, Senior Policy Manager, Scottish Government, Safety, Openness and Learning Unit
Patient Reference Group: terms of reference
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