Endocrine Abstracts

Background: Patient Support Groups (PSG) play a key role in the support, education, research and training for patients and clinicians alike, as well as providing invaluable input to key documents e.g. Defining the Future of Endocrinology (DfE), highlighting the importance of a closer working relationship with SfE.

About the PSG Network: Established in Sept 2021, the network includes representation from SfE affiliated PSG and a Nurse and Clinical committee representative. Meetings are held twice per year with the agenda driven by the PSG.

Hot Topics: • Support and collaboration between different PSG (importance highlighted by pandemic)

• Improving access and visibility

• Drug shortage information sharing

• GP collaboration/information sharing

• Research and Clinical Trials increased awareness

• Support to attend SfE events

PSG Activity

• PSG Facebook page and email set-up

• SfE formal affiliation of PSG (ratified and updated with the input of PSG representatives)

• PSG resources linked in the Resource Hub

• Active involvement in SfE projects e.g. ACC Service Improvement Project

• Travel and Project grants

• “How to guide” to access drug shortage information via the Specialist Pharmacist Service

• Working group formed to target GP collaboration

• Engagement with NICE and NIHR representatives

• PSG contribution to Nurse newsletter and presenting at key meetings i.e. BES

• Sharing expertise at PSG network meeting e.g. Patient Initiated Follow-up

• Feedback to Clinical and Nurse Committee

In development

• Poster for Clinical areas that includes the QR codes for SfE affiliated PSG and the Steroid Emergency Card

• Bitesize webinars -Sept 2023

Conclusion: The SfE PSG network provides a forum to share concerns and best practice in a collaborative and supportive environment. It has led to streamlining the PSG affiliation process, enabled improved engagement with PSG at Society events, the development of new tools for patient engagement/accessibility and essentially, a voice to the PSG.