Today, the National Institute for Health and Care Excellence (NICE) has published its first-ever national guidance for the identification and management of adrenal insufficiency.

The guidance aims to improve patient safety and treatment for those with adrenal insufficiency. Put together by a committee of experts made up of healthcare professionals and people with lived experience, it is used to inform healthcare professionals when treating someone with adrenal insufficiency. It is also useful for people with the condition themselves and those who support them, such as families and carers. 

It reflects evidence from research, clinical studies and clinical practice. The Addison's Disease Self-Help Group were part of the consultation process for developing the guidance alongside the medical community and other health organisations. 

Positively the new guidelines recommend and highlight:

• Clarity over the need for steroid emergency cards and emergency injection kits to be issued to all patients.
• Noted that a minimum of two emergency injection kits should be prescribed, so spares available for travel or in case a vial shatters and becomes unusual in an adrenal crisis.
• Stated hydrocortisone for intramuscular injection can be given by anyone when adrenal crisis is suspected -  helping to remove worry from carers or first-aiders for example.
• The importance of glucocorticoid as a life-essential hormone replacement and life-saving treatment for adrenal crisis.
• In diagnosis, a patient being on oral oestrogens should not delay testing (risking adrenal crisis) but instead taken into account when  interpreting serum cortisol responses.
• The safety and importance of continuing all steroid replacement during pregnancy emphasised. Increased doses of hydrocortisone, such as stress doses or injections, will not harm the baby because hydrocortisone is broken down and inactivated in the placenta.
• The psychological stress definition now includes examples such as bereavement, exams, and getting married or divorced, to help illustrate and provide real-life examples to improve understanding.

Read in full here

Our Stakeholder Response

The process for writing the guideline includes feedback from professional organisations, such as ourselves, who were Stakeholders in the development of the guidelines. We have been actively involved in responding to NICE’s consultation on this guideline update as we’ve been updating members in our magazines and at our recent Addison’s Roadshow events.

We formed a Working Group from our Addison's Clinical Advisory Panel (CAP) to review and respond on elements such as diagnosis, long-term management and treatment. Thank you very much to Professor John Wass, Professor Wiebke Arlt, Dr Georgina Russell and Dr Steve Kell for your expertise and time.

We are pleased to see the new guidelines help address some of the inequalities and variable treatment received by those with adrenal insufficiency, due to it being a rare condition. For example the need for a life-saving emergency hydrocortisone injection kit to be immediately prescribed to all newly diagnosed patients, with appropriate written instructions and training. This is just one of the matters we called for in our response to the consultation on these guidelines.

Additionally, NICE will now signpost to the ADSHG under ‘Information for the Public’, a positive step forward and builds on our work with NHS Digital from last year.

Chloe Mezzetti, who lives with Addison's herself, is the Fundraising Manager at the ADSHG and a lay member on the NICE's guideline committee comments:

"These valuable guidelines will help shape the standard of care and improve patient safety for everyone living with Addison's and adrenal insufficiency across the UK. I have truly enjoyed my role as a lay member and contributing to these guidelines by sharing my lived experience."

“After diagnosis, an emergency hydrocortisone injection kit should always be prescribed and explained to new patients to prevent a potentially fatal adrenal crisis. Due to being a rare condition, this has not always been the case for our community. It is fantastic these affordable and widely available emergency injection kits are one of the new recommendations in the NICE guidelines – saving lives! I always carry my injection kit in my bag and I also have a backup kit which I keep in my car.”

People with experience of adrenal insufficiency were also invited to respond to the draft guideline and you might have been involved in giving feedback on the draft at the end of last year. The final version provides invaluable guidance to healthcare professionals, and should help them give their patients the best possible treatment.

What happens next?

Many of you may be understandably keen to implement and access recommendations in these new guidelines and we suggest that you speak to your Endocrinology team about this at your next appointment. It’s important to note that these guidelines have only been published today, meaning local areas will need some time to put them into practice.

We will of course be working to ensure this happens, so we can make sure we’re helping you to navigate changes to treatment, whilst supporting our incredible NHS. 

Philippa Sharman, Communications and Research Manager at the ADSHG who coordinated the ADSHG Stakeholder response comments:

“Addison’s disease and adrenal insufficiency are rare conditions so understanding and treatment is fraught with challenges. It is rapidly fatal if untreated yet quite easily managed if healthcare professionals (HCPs) are well informed, and the patient has access to sufficient corticosteroid (steroid) medication and support. These new NICE Guidelines are vital to timely diagnosis and effective treatment, saving and improving lives, alongside reducing hospital admissions and lengths of stay, lowering costs to the NHS.

In an emergency situation, unfortunately, too often, HCPs do not realise the urgency of treatment for adrenal crises or fail to heed the requests of well-informed patients for hydrocortisone. The NICE guidelines help to address this providing life-saving information. They also help prevent adrenal crises in their clarity over education, steroid emergency cards and a minimum of two emergency injection kits to be issued to all patients. These are just some of the matters the ADSHG called for in our response to the consultation as a Stakeholder in the development of the guideline.

There is still work to do, but the positive change and voice brought by the new guideline for diagnosis and treatment of Addison’s and adrenal insufficiency is a fantastic step forward in patient safety and education on these rare endocrine conditions. We are very grateful to the guideline committee for their hard work and dedication to improving the lives of our community.”

Today the Addison’s Disease Self Help Group is celebrating a clear step towards those living with Addison's and adrenal insufficiency having access to support to live happier, healthier and safier lives. Ultimately, guidelines must be effective; this document drives real change and rises to the challenge of improving outcomes for those affected by the conditions. 

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> Read NICE's press release on the Guidelines: "Emergency kits for people with adrenal insufficiency recommended to avoid hospital admissions"

> Emergency hydrocortisone injections kits - support & education for patients & medics

> #ShareYourKit - injection kit awareness campaign

> Shop - injection kit solutions from our online shop

> Healthcare professionals - learn more about Addison's & adrenal insufficiency

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