Working with NHS Digital, the ADSHG has updated the NHS content regarding Addison’s disease on the NHS website. The new guidelines incorporate extensive input from ourselves steered by the Chair of the ADSHG’s Clinical Advisory Panel, Professor John Wass. 

When hearing they have “Addison’s disease” many immediately take to Google to search and find out more. The top search result when Googling Addison’s disease online is the NHS website for Addison’s disease. So making sure this information is accurate and up to date with the latest research and treatment guidelines is vital. It supports healthcare professionals at work and helps people with Addison’s and adrenal insufficiency get the best care.

 

With the help of our expert and trusted Addison’s Clinical Advisory Panel, many items within the NHS website for Addison’s disease were updated throughout the review process. Most importantly the review brings the webpage into line with the key recommendations from the ADSHG publications and guidance.

An overview of some of the changes.

The necessary provision of a steroid emergency card and hydrocortisone injection kit is now included throughout

• Providing a personal injection kit to patients: people with Addison's need to carry an emergency injection kit with them at all times. This allows the person with Addison's or someone else to administer a timely injection if they are showing signs of an adrenal crisis. No time should be lost in waiting for the ambulance to arrive before receiving the injection.
• Prescribing the kit: It is now noted that the GP or endocrinology team are to prescribe the medicine needed for an emergency hydrocortisone injection kit.
• Training and confidence in self-administering the injection: our key charity aim is to equip people with Addison’s and those who support them with the confidence in self-administering the hydrocortisone injection. The ADSHG and the Pituitary Foundation, are linked on the webpage, giving people immediate access to the expert training our charities offer. This also allows for those who have lived with Addison’s for many years, to proactively consider refreshing their knowledge by watching the training videos or printing out the ‘how-to’ step-by-step instructions

This will all positively contribute to reducing hospital admissions, due to this adrenal crisis prevention education as well as improving quality of life by alleviating worries of not knowing or having the resources to manage an adrenal crisis.

 

Sick Day Rules

• Emotional stress: the impact of emotional and psychological stress is often under-recognised mostly because each challenge is unique and individuals may respond in different ways. This meant it was previously not included under the Sick Day rules explanation. Now under ‘Adjusting your medicine’, severe emotional or psychological stress, such as grief, is included. This provides people living with Addison’s education on this impact so they can consider any situations on a case-by-case basis themselves as to whether they need to take a “top-up” dose.
• Three monthly repeat prescriptions: due to the Sick Day rules it is necessary to always have 3 months reserve supply of essential steroid medicine at all times. We hope this clarity, alongside our charity resources such as ADSHG’s GP Caring leaflet, and step-by-step instructions, will aid those who need to speak with their GP about increasing their prescription length.

 

Support

• A support section was added to link to our patient support group (ADSHG), as well as The Pituitary Foundation. This is to note that when receiving a life-changing diagnosis, the emotional impact should never be underestimated.
• Our charities offer support around the clock, fill the gap between appointments when an individual may be unable to see their endocrinologist or nurse for advice, as well as providing peer support by connecting people with others living with Addison’s.

We would like to thank the expert team of endocrinologists for reviewing the Symptoms, Causes and Treatments sections alongside the latest research. Thank you to NHS Digital for working with us to make sure these key amendments were made.

With NHS Digital, we have been able to work toward our common goal to increase understanding, confidence and quality of life through education, whilst easing the loneliness and fear of the rare diagnosis and management of Addison’s disease.

 

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