The Real Story

Despite significant steps to improve patient safety for people with adrenal insufficiency (National Patient Safety Alert and Safety Strategy, 2020, and NICE Guidelines, 2024), in late 2024, the ADSHG brought together a group of people with expertise and a vested interest in reviewing how adrenal crisis management is managed in the UK and pushing for improvements in treatment and care.

Since then, 'The Real Story' working group has grown and sponsors proposals for change at the highest levels.

The Real Story Group: Who are they?

The Real Story is a UK-wide, multi-stakeholder collaboration established to better understand and improve the management of adrenal crisis among people living with adrenal insufficiency, including Addison's disease.

How and why did it start?

2024 saw the launch of the long-awaited NICE Guidelines for the Identification and Management of Adrenal Insufficiency; thorough and robust guidelines showcasing best practice for the NHS.

As a charity with over 2300 members at that time, we continued to receive regular reports of patients going into adrenal crisis due to poor adrenal crisis management and receiving patchy care in A&E. We collaborate daily with motivated and experienced healthcare professionals who are passionate about raising standards of care for patients with adrenal insufficiency, so this seemed incongruous.

ADSHG Director, Cathy Thompson, initiated the group to bring together the people, the existing data and the research into the emergency management of adrenal crisis in the UK, to demonstrate the compelling challenges that continue to exist, in spite of the welcome developments introduced in the last 5 years to improve standards of care.

By raising awareness of the ‘real story’ experienced by adrenal insufficiency patients, we believe we can promote improvements at a local and national level, and prepare the UK market for improved methodologies for the emergency management of adrenal crisis.

What is the group doing?

The group aims to identify gaps between national best-practice guidance and the experiences of patients and clinicians, with a particular focus on emergency hydrocortisone provision for the treatment of adrenal crisis, steroid emergency card implementation, access to emergency injection training, emergency injection kit provision, and the wider management of adrenal crisis across healthcare settings.

The majority of patients with adrenal insufficiency are at risk of experiencing a life-threatening adrenal crisis if their cortisol levels drop too low and they are not treated. Treatment is available in the UK and in itself is not complex. However, due to lack of awareness and other obstacles, 1:200 adrenal crises are fatal - totally preventable deaths.

Through research, patient and clinician engagement, data collection and collaborative working, The Real Story seeks to drive practical improvements in patient safety, clinical outcomes and quality of life for people with all types of adrenal insufficiency, throughout the UK.

Representatives meet quarterly (online) to review progress on the project's initial objectives and to identify outstanding actions.

Key objectives of the group

Collate existing data on emergency management of adrenal crisis

Ensuring collaboration and a shared focus from clinicians and researchers working in this field across the UK, and facilitating researchers who are looking to focus on adrenal crisis management through Patient and Public Involvement and Engagement (PPIE).

Identify data gaps in data and fill them

Improvements must be based on clinical evidence of need, and that requires data, in an area of research that is fairly niche. Through working together we can identify what data is still required to support change, and plan how to get the information needed.

Tell the 'Real Story'

Once the data has been collected, we need to represent it as a compelling narrative to highlight gaps in the existing systems and to draw attention to changes needed.

Work with GP surgeries

Increasing GP awareness of adrenal insufficiency and adrenal crisis, and the importance of patient medical records including 'steroid-dependent'.

Work with the Pharmaceutical and MedTech industry

Several processes are reliant on pharmaceutical organisations leading on a change: licensing applications, product development etc. It is key to develop relationships with the organisations that whose actions have a significant impact on the adrenal insufficiency community.

Get needles and syringes onto drug tariff

Whilst many GP practices might wish to support adrenal insufficiency patients by supplying needles and syringes for their emergency injection kits, as they are not on drug tariff for this patient group, they will not be reimbursed for the supply. We are working with the corporate organisations involved to try and get this addressed.

Support implementation of NICE Guidelines protocols in A&E

Increased recognition of the NHS Steroid Emergency Card and the requirement for a 'Treat first, diagnose later'approach to adrenal crisis management in an emergency.

Promote reliable provision of emergency injection kits

In line with the NICE Guidelines, people at risk of adrenal crisis should be issued with an emergency injection kit and trained how to use it, not just once, but regularly.

Ready the market for improved emergency injection techniques

Improvements are on their way to address the outstanding patient safety issues around emergency injection preparation. When they arrive, we want to support patients to benefit from those improved technologies as soon as possible.

The ADSHG will keep it's members up-to-date on progress being made by The Real Story group, through it's member emails, newsletters and magazines.

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