Adrenal Insufficiency Patient Voice Presentation - eECE 2021

Watch four leading patient advocacy groups for adrenal insufficiency, with Endocrinology experts Dr Helen Simpson and Professor Simon Pearce, deliver a 30-minute session on the topic: ”Support Groups for Adrenal Insufficiency Patients Bridging the Clinic Gap. Enhancing support for you and your patients while healthcare systems recover from COVID.”

This ‘Patient’s Voice’ session is recorded from 23rd European Congress of Endocrinology (eECE2021) held on the 23rd May 2021, giving you the unique opportunity to access educational content on demand, which connects the adrenal insufficiency patients’ needs, views and experiences with the scientific and clinical view of endocrinology experts.

What is the session about?
In this session, the Addison’s Disease Self Help Group (ADSHG) joined forces with fellow patient advocacy groups (PAG's): The Pituitary Foundation, Alex TLC and CAH Support Group. Together we encourage healthcare professional to make the most of our services, as healthcare systems across Europe balance the provision of routine clinical care with the impacts of COVID-19.

Dr Helen Simpson (UCLH) and Professor Simon Pearce (Newcastle) join us, providing their expert medical insight and answering questions. They share their experiences of the way PAG's have helped to supplement the support needs of their patients with adrenal insufficiency between appointments – especially with the move to online and telephone appointments during COVID-19.

Dr Helen Simpson also talks through the new NHS steroid emergency card and steroid wide safety strategy to support early recognition and treatment of adrenal crisis in adults. She talks about how the dissemination of this messaging through the PAG's was key to getting the information and understanding to patients during COVID-19.

How can patient advocacy groups (PAG's) help?
All four PAG charities speak through the services they offer and benefits to people with adrenal insufficiency, whether newly diagnosed or more experienced. These include:
🔹 Easing loneliness and fear, especially when newly diagnosed.
🔸 Increasing confidence and quality of life through education.
🔹 Reducing hospital admissions through adrenal crisis prevention education.
🔸 Supplying adrenal crisis kits and other essentials.
🔹 Updating people with adrenal insufficiency about COVID-19 and vaccine-related developments.
🔸 Sharing lived experiences of people with our conditions with medics at conferences and our digital channels.

Please visit our websites to find out more and stay in touch.
🔹 Addison’s Disease Self Help Group (ADSHG): https://www.addisonsdisease.org.uk/ad...
🔸 The Pituitary Foundation: https://pituitary.org.uk/hcp-area/end...
🔹 Alex TLC: https://www.alextlc.org/
🔸 CAH Support: https://www.livingwithcah.com/

Our thanks to Endocrinology experts Dr Simpson, Professor Pearce; and PAG representatives, Pat McBride, Miranda Payne, Kaz Williams, Karen Harrison, Vick Smith, Pippa Sharman, and the events team at the eECE2021, for making this event happen. The Patient Voice sessions are great opportunities for PAG's to actively engage with the endocrinology medical community, to raise awareness and develop our shared understanding of rare diseases.

Further links to items discussed:
🔹 Associação Brasileira Addisoniana (ABA) in Brazil: https://www.addisonsdisease.org.uk/bl...
🔸 Steroid Emergency Cards: https://www.addisonsdisease.org.uk/st...
🔹 Society for Endocrinology Adrenal Crisis page: https://www.endocrinology.org/adrenal...

Our thanks to Paul Sharman for volunteering his time to edit this video:   / paul-sharman-913658b9