Really quick update

I forgot to hit Publish, I wrote this a couple of weeks ago…or last week, I don’t remember. I’m still having a little bit of memory issues. So…her it goes.

The hospital has acted on my complaint.

The staff has had a training session on how to handle patients.

Do not assume the patient is in the wrong.

Do not ASSUME anything, UNDERSTAND what is happening then react.

Never react unless you understand.

Security should only be called when patient is a threat to themselves or others.

That is part of the training the nurses and staff on the neurology floor have now been given.

Since the hospital lost a lot of their staff due to COVID some of the training hasn’t been done. They are certified in their positions, the nurses have graduated, but they haven’t had proper training in how to handle every situation.

This was not supposed to be said to us, but the person who is monitoring complaints (and talking to S) was a nurse for 40 years, she sees how different it is since the pandemic. She is trying her best to make sure nothing like what I went through happens to another person. That’s all I wanted.

Finally it is in my records that I am deaf with cochlear implants. I thought it was in there before, so that confused me. We were told if I have to go in that hospital again I need to make sure there is a sign on the door that says “STOP patient is deaf with cochlear implants”, they all need to know I can’t hear everything that is said, sometimes I can’t hear anything that is said.

I won’t be getting ketamine any more. I’m very disheartened that it did not work. I felt like it was the last resort. I pretty much still feel that way, but I’m not giving up! I’ll keep trying, that’s all I can do. It’s very hard to live with a constant migraine, people who’ve never had one cannot understand, but they can be sympathetic and supportive. If you don’t have anyone in your life who meets those requirements I suggest you go out and find someone as fast as you can. If there’s no one at home to support you, reach out to a support group, in person or on line. If you need, contact me, there’s a tab for that at the top of the page. (note I do not accept request to post on my blog to advertise a product…) I am very happy to talk with anyone who needs support. Or just someone to vent to.

That’s all for now,

I hope you are all safe and as well as you possibly can be.



5 thoughts on “Really quick update

  1. So glad they received training though what they were taught seems like common sense thinking as part of the job (and life). People know it, it’s filed away in the brain somewhere, but still need to be reminded of it every once in a while.


  2. Thanks for the update. Sorry that ketemine didn’t work for you. Perhaps there is another treatment, not yet available (perhaps even heading towards a clinical trial) that will be helpful.
    Staffing is always an issue in health care. With COVID burnout, as the mediator indicated, folks are working without full training such as patient awareness, disability issues, and over all empathy and caring.
    I think at least one good came of that bad — staff that is more aware and compassionate! I know it’s not full compensation, but you and Stuart’s efforts will help future patients receive better care.


  3. Hurrah – I’m glad the hospital has actually done something! I complained for the first time to my GP practice because of the absurdly inappropriate actions of a new nurse there who was horrible. They basically said the nurse denies what I said, she was in the right, and turned it back on me to make out like I’m the one in the wrong. What the fuck is this patient-blaming, responsibility-denying nonsense?!

    Anyway, glad to hear staff have had some training to remind them about appropriate treatment of patients. Thank goodness for that nurse monitoring the complaints who can see the situation for what it is and who actually wants to help patients in future avoid such experiences.

    I’m sorry the ket wasn’t helpful. That’s hugely disappointing and I get your disheartenment. I tried Ajovy for migraine earlier this year and have now stopped as it didn’t help, will be trying Aimovig next. I like your attitude so please read your own words back to yourself when you need to hear them: “I am not giving up!”

    Sending lots of love, please look after yourself 💜💜💜💜

    Caz xxxxx


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