A new consultation reference guide to support endocrinologists and nurses in their review of people with Addison’s disease, during diagnosis as well as follow-up appointments, is now available on the Society for Endocrinology and ADSHG websites.

This reference guide is intended to support people with Addison’s when preparing questions for their appointments and facilitating consultation discussions with their clinicians. This is particularly important in rare conditions where not all clinicians immediately have to hand information, or lots of previous experience, in managing these rare conditions.

The reference guide was developed by Dr Sofia Llahana, NIHR Post-doctoral Clinical Lecturer and Endocrine Consultant Nurse and Professor John Wass, Professor of Endocrinology at Oxford University, chair of the Addison's Clinical Advisory Panel, in collaboration with the ADSHG. The consultation guide was reviewed by the Society for Endocrinology Clinical Committee, it is endorsed by the Society for Endocrinology and is available on their website under ‘Clinical Guidance’.

Preparing for appointments helps you get the most out of those vital minutes with your endocrinologist, as well as easing any worries that you may have. This reference guide helps prompt you and your endocrine specialist on important issues.

 Download the Consultation Reference Guide

Dr Sofia Llahana shares with us:

“The Consultation Reference Guide is a useful resource for endocrinologists and endocrine nurses to support patients with Addison’s Disease at diagnosis, their follow up reviews, treatment planning and monitoring to decide and agree on the best possible management of your condition and treatment. This Guide is intended for general guidance and may not apply to all patients or local services so please check and discuss with your endocrine team."

"As a person with Addison’s Disease, you can use this Guide to prepare for your consultation whether this is during the diagnosis (what tests you undergo and what they mean) or long-term follow up; you can note any symptoms, concerns or questions you have about your condition and treatment which you can discuss with your endocrine nurse or endocrinologist."

"You can use the hyperlinks on the electronic version to access additional resources. A 20-minute consultation with your endocrine specialist can be much more effective if you are prepared and ask the right questions!”

Making the most of appointments

Preparing before an appointment can help you make the best use of the time available. Sometimes, the time allocated doesn’t feel long enough – this can be frustrating for both you and your healthcare professional. They’ll be anxious to discuss the most important issues first, just like you.

So here are our suggestions on how to make the most of your appointments:

  1. Read through the new Society for Endocrinology and ADSHG consultation reference guide. Circle on the guide, or make notes, of any elements you would like to discuss.
  2. If you have access to a printer, print off copies of the consultation reference guide to take to your appointment - one for you and one for your endocrinologist.
  3. Think about you – write down the top 3 things you want to get out of your appointment.
  4. Write down your current top 3 symptoms and how these impact your life.

Be specific and think in advance whether you’re hoping for a particular outcome, but remember to be open to other possibilities that may be suggested. Taking a list or notes to appointments will help you stay focused and make the most out of every appointment.

Appointments provide you with an opportunity to ask questions and discuss options to help you manage your Addison’s. You are at the centre of the management of your condition and have an important role to play. You can become an expert patient by building up your knowledge of Addison’s and its management. You can ask your doctor questions and the ADSHG is here to support you. Everyone with Addison’s is different so you’ll want to find the best balance for your health.

Read more on our appointments page

Thank you to Dr Llahana and Professor Wass for this fantastic resource to support and improve care for those living with Addison’s disease. If you're a healthcare professional and are looking for more information on Addison's and adrenal insufficiency, please visit our medics page.

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