Many, although not all, of the sixteen regional ambulance services/trusts distributed across Britain and Ireland allow registration, also known as “red-flagging”, of patients with particular medical conditions, including Addison’s disease.

Registering with your local ambulance service will mean that when a call by you or about you from your home address is made to 999/111, this will alert the call handler that you have Addison’s or adrenal insufficiency and are therefore steroid-dependent. The call handler can then alert the ambulance crew of this and the possible need for an emergency injection of hydrocortisone.

When registering with an ambulance service or calling 999 for an ambulance, key phrases to use are:

• Steroid-dependent, adrenal crisis, adrenal insufficiency/ Addison’s emergency AND describe symptoms (vomiting, diarrhoea, dehydration, injury/shock).

Read on for more information.

Find and contact your local ambulance trust

In most areas it is your responsibility to get yourself registered with your local ambulance trust. As a first step, you can identify your local ambulance trust/service for England and Wales.

In the case of Ireland, Northern Ireland and parts of Yorkshire registration is currently not possible. Due to changes in registration practice and procedure across ambulance service regions, you are also recommended to search for the latest information in the relevant ADSHG Ambulance and A&E sub-forum for your region. These are in the members-only area - if you would like to visit the online forum and are not yet a member join our charity here.

In these sub-forums, members are encouraged to share useful information and their most recent experiences of registering in their particular region.

Online Forum: Ambulance and A&E

Members’ personal stories of calling out an ambulance can also help you find out more about practice in a particular region so do look out for these when they are published in our magazine and on our website.

In some regions, endocrinologists have established hospital-initiated registration of steroid-dependent patients. Read more about Dr Sam Westall's research into ambulance alert systems for people with steroid-dependency.

Summary Care Record

As part of the digitisation of the NHS in England, nearly all patients have a Summary Care Record created for them by their GP practice automatically unless they have chosen not to have one. The Summary Care Record is a short summary of your GP medical records. It tells other healthcare professionals who care for you some basic information about the medicines you take and your allergies. This enables healthcare professionals outside of your usual GP practice to have better medical information about you to provide you with safer care.

Some patients, including those with long term health conditions such as adrenal insufficiency, have previously agreed to have additional information shared as part of their Summary Care Record. Additional information includes information about significant medical history (past and present), reasons for medications, care plan information and immunisations. This information can be critically important during an emergency, such as an adrenal crisis, where patients may be too unwell to tell healthcare professionals about their condition.

The purpose of the Summary Care Record is to improve the care that you receive. If you have previously opted out of having a Summary Care Record, or if you have declined to share additional information as part of your Summary Care Record, your choice is respected and applied. Regardless of your past decision, you can change your mind at any time.

Summary Care Records can be an invaluable tool to help ensure that patients receive safer care. For those with adrenal insufficiency, alongside the NHS steroid emergency card and ambulance alerts, the Summary Care Record offers an additional safety net to improve awareness of adrenal insufficiency in case of emergency.

Learn more about Summary Care Records

Understand the process followed in your area

Ambulance services that operate a patient registration system may use one of several procedures:

• Registration through a GP (e.g. Scotland);
• Contact your ambulance trust directly to register, and
• Completion of a form.

The details that you need to provide will also vary. In some cases, renewal of registration may be required annually; in others it is a lifetime registration. Also, be aware that some ambulance trusts are no longer registering steroid-dependent adult patients as their ambulances routinely carry emergency hydrocortisone injections and their crews are trained in how to administer them. They may only register those under 16 or adults with additional complicating medical conditions.

Useful tips for getting the help you need from ambulance services

When registering with an ambulance service or calling 999 for an ambulance, key phrases to use are:

• Steroid-dependent, adrenal crisis, adrenal insufficiency/ Addison’s emergency

AND describe symptoms (vomiting, diarrhoea, dehydration, injury/shock).

You are advised to carry documentation and/or evidence of steroid-dependency with you at all times (Medic Alert jewellery, Emergency card for wallet or purse or GP/hospital letter concerning your condition). Carry a copy of the NHS Steroid Emergency Card. The weblink and QR code printed on the card takes you and health teams straight to the Society for Endocrinology Adrenal Crisis page which has all the relevant guidance on how to manage an adrenal crisis, patient information links as well as a National Patient Safety Alert. 

As not all first response crews carry injectable hydrocortisone or are permitted to administer the emergency injection, it is also especially important to carry your own emergency hydrocortisone injection kit and to know how to use it. If you do not have one already, you are strongly advised to contact your GP or consultant about getting the necessary medication for the emergency injection kit.

If you live in the Republic of Ireland 

Within the Republic of Ireland, all ambulances now carry injectable hydrocortisone and home address registration is not offered. Visit our Addison's Ireland page to find out more. 

We're working hard to improve emergency care

The ambulance services in the United Kingdom and Ireland are continually improving their support of people with Addison's and adrenal insufficiency, thanks to the lobbying and advocacy of the ADSHG and its members. Keep up-to-date by reading our regular ambulance page in our members' magazine.

	News: Standalone Ambulance Guidelines on Steroid Dependency added to JRCALC thanks to work by the ADSHG.
	Learn more about our CPD Paramedic training sessions on adrenal crisis management
	Read 'Behind the Research: Ambulance Alert System'

To receive the latest expert advice, guidance and ADSHG news join our charity to become a member.

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Article written by Julie Watson with contributions from Professor Simon Pearce and Vick Smith. December 2019.