Due to being time-critical, potentially life-threatening conditions, people with Addison’s and adrenal insufficiency (steroid-dependent) could have their address ‘Red Flagged’. This was to highlight to the call handler that there was a person at that address at risk of adrenal crisis. Ambulance trusts have now moved away from this approach.
Over the last few months we have been liaising with AACE (Association of Ambulance Chief Executives) alongside Addison’s Disease Self Help Group to reassure the steroid-dependent community about this change. Here, we will talk you through:
- What happens next
- How to ensure your Summary Care Record is shared with ambulance staff
- Other preparations you can take so that in an emergency, you receive the best care possible
Moving away from Red Flagging
Following review, the recommendation of the AACE (the membership organisation supporting ambulance services) is that ‘red flags’ should no longer be used.
Therefore, ambulance trusts have either ceased or will cease the use of ‘red flags’. Previously it was the responsibility of the person with steroid dependency to register with their local ambulance trust if they wished to have their address ‘flagged’. So you may have already noticed this change if you recently tried to register your address.
AACE’s work to communicate this change to endocrine teams is ongoing and some ambulance services may still be reviewing or changing their approach, so there may be conflicting information around for some time.
It is important to note that ambulance staff will still be able to see you are steroid-dependent via your Summary Care Record.
Why the move away from Red Flagging?
The move away from Red Flagging is primarily for patient safety. Below are four reasons for this change.
- Related to an address – not the person. Red Flags were related to a physical address, not to the person with the condition. Therefore, if the person was not at the address, the flag became redundant. Also, if a person moves house or dies, the validity of the flag becomes flawed.
- Improved clinical guidelines. In 2022, specific and standalone guidelines for steroid-dependent patients were included in the clinical guidelines for ambulance staff. These are easily accessible for paramedics via their JRCALC app during a shift and emphasise the urgency required in managing adrenal insufficiency and treating adrenal crises.
- Limited resource. Ambulance services do not have the resources or capacity to manage large numbers of flags, and large numbers of flags increase risk.
- How the call is categorised. When ringing 999 and an adrenal crisis is suspected, ambulances are categorised based on the presenting symptoms, and a blue light ambulance will be sent if appropriate.
Areas that still use Red Flagging
Please note the following ambulance services currently still use Red Flagging (as of February 2024)
- Scotland uses red flagging for children and adults
- Wales, West Midlands, Northern Ireland, and the North East use Red flags but are in the process of reviewing
NHS Summary Care Record – highlight your steroid dependency
Having information on your personal Summary Care Record (SCR) highlighting that you are steroid dependent is very important. A Summary Care Record is a national database that holds electronic records of important patient information such as current medication and allergies. This enables healthcare professionals outside of your GP practice, such as paramedics and ambulance crews, to have better medical information about you to provide you with safer care. It is created from GP medical records – whenever a GP record is updated, the changes are synchronised to SCR.
This information can be critically important during an emergency, such as an adrenal crisis, particularly if someone is too unwell to tell healthcare professionals about their condition.
How this information presents on the system may vary from region to region and ambulance services may have different levels and methods of access to SCR’s. Therefore, it is important that you ask your GP or Endocrine team to place information on the system to say that you are steroid dependent and any other relevant information about your specific care needs. We strongly recommend that you check on a regular basis that your SCR is up to date and is updated if necessary, for example when your treatment, medication or care plan is changed.
The purpose of the Summary Care Record is to improve the care that you receive. If you have previously opted out of having a SCR, or if you have declined to share additional information as part of your SCR, your choice is respected and applied. Regardless of your past decision, you can change your mind at any time.
To check if your Summary Care Record is up to date, ring you GP surgery and ask them for more information.
Learn more about Summary Care Records
Confirm your identity – always carry a Steroid Alert Card & Emergency Injection Kit
If you are unconscious and your identity cannot be identified, your SCR cannot be accessed. To stop this from happening, always carry medical IDs, including steroid emergency card and medic alert identification. This helps others to help you! Show your steroid alert card to ambulance staff and any other health care professionals if you need urgent or emergency care.
Learn more about steroid alert cards
Calling an Ambulance
If adrenal crisis is suspected, take the following steps:
Step 1: before calling 999 inject yourself, or the person you are caring for, with your hydrocortisone ampoule (100mg).
Step 2: Seek immediate medical attention – call 999.
Step 3: Clearly state to 999 that you are steroid-dependent and having an adrenal crisis AND describe symptoms, e.g. vomiting, diarrhoea, dehydration, injury/shock.
Step 4: Be prepared with NHS steroid emergency cards to hand over to paramedics.
Step 5: Tell the ambulance crew when they arrive if you have administered extra steroids.
What happens when you call 999
Ambulance services will ask specific questions when you call 999. The first questions asked will be if the patient is breathing, awake and if not awake if the patients breathing is noisy. Once these questions have been answered, the location of the emergency will be confirmed and then further questions asked to establish the exact problem.
If you have been told by a medical professional that you must always follow a particular course of action if you suspect an adrenal crisis, make sure you declare that information to the 999-call handler. Additionally, remember the keywords to use are:
- I am steroid dependent
- I am/may be in adrenal crisis
As you give further information about your name, address and date of birth to an ambulance call handler, in England it is likely that you are matched to your NHS number. This will enable, where appropriate, for clinical staff to access your Summary Care Record, and depending on the situation your consent may or may not be asked for first.
You may be informed that a clinician will ring you back. Do not be concerned about this, as when called back you will be able to give more detailed information about your condition.
Ambulance clinical guidelines – improving patient safety
All UK paramedics and clinical staff follow guidance from the Joint Royal Colleges Ambulance Liaison Committee, commonly known as the “JRCALC guidelines”.
In 2022, specific guidelines for steroid-dependent patients were introduced. This includes medicine information for hydrocortisone, which is carried on all the ambulances and can be given to people in adrenal crisis.
JRCALC worked together with patient organisations to create the guidance and continue to collaborate to make sure it is accurate, up to date and contains clear information on how to manage adrenal emergencies. The guidance is regularly reviewed, and updated as and when required.
Support
If you do have any concerns about your Summary Care Record please click here to learn more, and speak to your GP surgery or endocrine healthcare team. We are also here to support you.
- Meet with others in the pituitary community through our support groups
- Speak to an endocrine nurse
- Get psychological support