Advice on medic alert bracelet and emergency injections

[member_44409]

Hi, I'm new to the forum and would be really grateful for a couple of bits of advice. My partner is newly diagnosed with a pituitary adenoma and failure of anterior pituitary. Am wondering about correct wording for medic alert bracelet, especially for risk of hydrocortisone crisis. Also his consultant favours going to a and e if such an incident occurs but i would prefer us to have our own injections to hand. Any thoughts?

Thank you!

Karen

[Pat]

Hi Karen
welcome to the forum.

This is general guide from our medical committee for words on emblems. Patients should confirm with their endocrinologist.

A: ‘Hypopituitarism on steroid replacement and at risk of an adrenal crisis’
B: ‘Adrenal insufficiency on steroid replacement – at risk of adrenal crisis’

If patient also (or only) has DI this must be included as ‘Diabetes insipidus’

Individual patients should discuss with their own endocrinologist to see if details of other deficiencies and problems are worth including also.
Pat

[member_44409]

Thank you so much Pat, that's really helpful.

Any thoughts about the injections?

[Pat]

A number of patients do have emergency injections at home. Your GP may agree to prescribe these for you and especially for going away from home (holidays). The only HC injection available at the moment is called Solu-Cortef - see info and instructions https://www.pituitary.org.uk/information/treating-a-pituitary-condition/hydrocortisone/
The ex Efcortesol HC injection (hydrocortisone sodium phosphate) we hope will be back in production later this year.
In the event of an adrenal crisis , and you didn't have this injection or couldn't inject yourself, we advise seeking medical help - call ambulance and state "adrenal crisis". Even if you did have an injection and were able to use this, we still advise you seeking medical help asap.

Pat

[member_44409]

Thank you Pat, that is really helpful!

[member_41389]

Hi
Two things:

The NICE Clinical Knowledge Set is what your GP should know about specific diseases. There is one for Addisons Disease (Adrenal Insufficiency) and you can find it here https://cks.nice.org.uk/addisons-disease#!scenario. It's worth reading the section called follow up where the issue of emergency injection material is explicitly covered. The item you need prescribing currently is Hydrocortisone Sodium Succinate, 100mg, added to this you will need Water for injection, 2ml - that is 2 separate items on the prescription unless the GP will only give you a single dose. You will also need syringes (at least 2ml 3 or 5 ml better) and needles (green or blue at least 30 mm long unless you are very skinny). For some bizarre reason your GP can't prescribe needles and syringes for this but may be willing to give you a handful alternatively try the practice nurses. You can also buy them from the ADSHG (with a useful box if you like) at http://www.addisons.org.uk.

The wording on medical bracelets is always a challenge. I asked at the recent SWAST conference day and even the paramedics couldn't agree. My eventual choice for the UK has been: Name, Date of Birth and NHS Number on the front then Addisons Disease, T2DM, Astma and Acromegaly on the reverse. That way they can at least access my Care Summary Record.
For overseas holidays I have a separate, larger bracelet which lets me put all that on the front and its also got a broad red silicone rubber strap to make it obvious. The reason for Addisons rather than adrenal insufficiency or hypopituitarism is simply that the Joint Royal Colleges Ambulance Committee 2017 update (and the earlier 2006 version) explicitly index on Addisons Disease but not on adrenal insufficiency so it's easier for an EMT or paramedic to reference.

All the best
Tim

[member_44409]

Thank you so much Tim. That's incredibly helpful. I'm so sorry I didn't spot your reply sooner. I'm still finding my way sround the site!

[KitKat]

Hi there,

Late to this conversation and really helpful detail from Tim. My view would be that the key phrase is the one Pat mentioned: risk of adrenal crisis. If you have several additional conditions, it can be tricky to fit everything on a bracelet. Adrenal steroid-dependence, allergies and asthma tend to be the ones that go downhill rapidly without emergency medical treatment, so worth prioritising. As Tim says, having your NHS number listed is a convenient shortcut for accessing the Summary Care Record with more detailed information. I also find it handy when attending outpatient clinics as I manage to leave the letter behind more often than is sensible, so I just read my NHS number off the bracelet to help the receptionist find my details.

Best
KitKa

[plum]

Hi

i realise that in an emergency the paramedics aren't going to rummage around and prefer to see a medicalert bracelet however...

as supplementary information I wrote out the following information on small cards which i keep in my purse /phone case / diary etc:
name, date of birth, blood group, allergies
NHS number, next of kin name and number, GP name and address,
hospital name, my hospital reference number, name of endocrinologist and endocrine sister.

I could add name of condition / special instructions also.

I've laminated these cards, which are about the size of a playing card.

just an idea.

plum