New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
Discuss the article on the Forums.

Emergency care plan for use with the Community Alarm Service

Discussion in 'Lifestyle Management' started by Calathea, Dec 14, 2011.

  1. Calathea

    Calathea Senior Member

    I am subscribed to my local Community Alarm Service, which means that I have a little pendant round my neck, and if I fall and press the button, they will come and pick me up. The problem is that by that point I'm generally too exhausted to speak or think straight, let alone to explain to them clearly exactly what I need. And they're primarily used to dealing with elderly people and not used to how ME works, so in the past they have overestimated how well I am and left me before they really should have, because they didn't know any better and I wasn't up to communicating what I needed.

    The plan is to print out an emergency care plan on a piece of brightly-coloured card and keep it in the top drawer of my bedside cabinet. I'm also thinking of printing out another card with basic details of how ME works. I find this sort of thing quite difficult, so I'd love to have some help with putting it together. Here are some notes I briefly jotted down the other day, in no particular order.

    Emergency Instructions for Calathea

    Partner: name, phone numbers, work (1 min away)

    Doctor - name, medical centre, phone number (2 min away)

    Check if Calathea needs to go to the toilet and if she needs help getting there and back.

    Check if Calathea needs to have something to eat or drink. Should be a packet of oatcakes in top drawer of white bedside chest.

    Help getting dressed, where clothes are (knickers, socks, bras, cotton top, trousers, sweater/cardigan)

    When to call the Doctor....

    May well look absolutely fine no matter how ill she is - don't be deceived!

    Check if Calathea is speaking coherently - full sentences, can answer several questions at length, not muddling words/ can stand or sit up without falling over/

    long recovery time from fall

    is cold - if can't get her warm, call partner and possibly doctor. Extra layers, rolled up light blue blanket down her side of bed, heat pad down her side of bed, quilt on sofa. Thermometer on bedside table by metal water bottle if needing to check temperature.

    Any medication needed / symptoms bothering her- list of symptoms- pain/ headache/ feeling sick/ dizziness , where it is

    If Calathea needs to go to hospital: handbag, shoes, clothes (where things are), mobile phone, folding walking stick

    Info on ME.....


    Where meds are

    Ask questions more than once in case Calathea getting the answer wrong. If she can't understand, don't speak louder, try rephrasing the question.

    to carer - were you in the room with her when she fell? did you see if she hit her head?

    has Calathea taken any medication?

    Always ask specific questions instead of general questions (put at top)

    bag for emergencies
  2. *GG*

    *GG* senior member

    Concord, NH
    Interesting, hope they take you seriously in the future.

  3. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    Do you have a medical bracelet? You can have some info there also. Great job! Good to be prepared.
  4. Wonko

    Wonko Senior Member

    The other side.
    They offered me this (in fact more or less demanded I take it) but I couldnt see how it would help, it's rare I fall and do significant damage to myself that would warrent hospitalisation or that other people wouldnt make worse, so I'd be interested in how you find this works for you.

    I'm also curious how you've managed to get a carer as both my advocate and I have been repeatedly told such services arent available unless I need them ALL the time, which I dont (depending on your definition of need). I can generally "manage" most of the time (if I couldnt I wouldnt be here) and not being dead apparently proves I dont need a carer all the time. As I would only find one helpful when I'm severe this apparently means I cant have one at all - althoguh any time i need someone to give me a bath, cut my hair etc, I can have one, it's just help with not starving to death or tidying up etc. I cant have. Slightly off topic I know and I may start a thread on it if I feel up to it after christmas.
  5. Calathea

    Calathea Senior Member

    The carer thing sounds like postcode lottery, to be honest. So much of this comes down to the budget allocated to home care by your local authority. I've had an absolutely terrible time with social services, and it's been so unpleasant that I now communicate with them through an advocate.

    I've had a few falls over the years and been unable to get up, not to mention really ill afterwards, so it's a useful service when you do need it. It's just not built with ME sufferers in mind, like everything else. I think they can make false assumptions about how healthy I am since I'm relatively young and look younger.
    Wonko likes this.
  6. Sushi

    Sushi Moderation Resource Albuquerque

    In the US many counties have a system called "File of Life." Not many patients know this though. They give you a sticker for your door, a magnetic, plastic red envelope for your fridge for medical records and instructions, and a wallet packet with the same. EMT's are trained to look for this.

    I also have a medical ID bracelet that directs people to my red wallet packet in case something happens when I am out. You can also put your doctor's card and pager # in the packet.

    If you are in the US, most police or Sheriff's offices have these materials available.

    Jennifer J likes this.

See more popular forum discussions.

Share This Page