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Wednesday, October 3, 2012

My thoughts on healthcare

Yesterday afternoon B phoned me. "Mom I had a seizure".  I literally froze.  B was home alone with six month old Stefan.  She only remembers that she put him into his Bumbo seat and that she suddenly felt tired so she lay down on the couch.  More than a hour later she only became aware of her surroundings again. She first thought that she just dozed off...but then she realised that her tongue was swollen and badly bitten. It is frightening watching somebody you love during a seizure.  B  immediately loses consciousness, she stops breathing for the duration of the seizure and her lips turn blue and then there is the convulsions of all the muscles which leaves her sore all over for days after.

I felt just awful.  I wasn't there to turn her on her side to prevent her from choking.  I wasn't there to wipe her face with a cool cloth...and horror of horrors...my grandson was without care for more than an hour.  Then it hit me:  What if she was busy bathing Stefan at the time...what if she was walking with him in her arms....

This ended a period of 18 months of being seizure free....and the worse part is that it could all have been prevented.  When B was a baby of 18 months she had meningitis and the result was that she was left with a lesion on her temporal lobe...this now causes epilepsy. It took years to stabilize the seizures and find the correct medication and the correct dosages.  Eventually the neurologist got it right.  B is on chronic medication, the problem is that our medical aid only subscribe to one service provider for chronic medication. The service provider is not great and as a rule we let them know a week in advance that B is coming to get her medication and more often than not when we pick it up the script is not fully filled or we need to return because they are out of stock.

Last week B advised them that she was coming in to get the medication.  When she arrived to pick it up on Sunday, they were without stock.  Without stock means something different to them than to us.  B is on 750mg doses, they didn't have that in stock but they did have 250mg and 500mg doses.  They just didn't want to give it to her because the medical aid would reject, so they sent her off without it. She eventually went to Dischem and bought two days supply out of her own pocket to tide her over until they got stock.  Monday came and went without them having stock.  B is very disciplined with her medication and sets her alarm morning and evening as a reminder.  Tuesday morning when the alarm went off, she had no medication.  A few hours later she had a seizure.  Only late Tuesday afternoon medication was ready for her to be collected.

I phoned the pharmacy to demand answers and was left hanging as the pharmacy staff bickered and blame shifted among themselves. I was not amused.  I told them that I hold them responsible for what happened and that I would take this matter further.  The pharmacist then proceeded to tell me that they experience many out of stocks with a lot of the chronic medication.  Today I e-mailed the medical aid.  I need a paper trail.  I need answers and I made it clear that I have no confidence in their service provider.  I also made it clear that should this matter not be resolved and should it happen again, I would hold them criminally liable for endangering B's life and the life of her child.

Is it normal that there should be so much red tape when somebody has a chronic and life threatening condition?
How would you have reacted if you were in my shoes?

17 comments:

  1. OH MY WORD< that is so scary.

    I don't think many people really care about the end effects of what they do. Like the pharmacists are dispensing and that's it. Not worried about a young mother who NEEDS her meds.

    I would make a big deal but I personally don't think much other than an apology will come of it. Are you with Discovery? They have a new method of dealing with chronic meds (well, new to me!))

    PS this is all coloured by my horrendous service experiences lately. No wonder I was out of sorts.

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  2. Oh gosh, I would be furious! And yes, go to them with the full force you can get.

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  3. I think they should be criminally liable already - why wait until next time - as you realised the consequences could have been even more dire for both her & Stefan. So sorry Lynette. Thank God she will be okay once she is over the aches and her tongue has healed.

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  4. Oh, this is just aweful and totally unacceptable Lynette! Thank heavens she's okay and that nothing happened to little Stefan. How scary for all of you. Love and hugs to you. xx

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  5. Thank God they are both safe. I don't even want to imagine what could have been!

    I hope this can be sorted out before anyone gets hurt.

    So sad one has to deal with such crap in the face of a life threatening illness

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  6. How scary.... my heart bleeds for her... My Mom has Epilepsy and my brother and I saw her have a seizure right in front of us when we were kids before the days of 911 or any other way of calling for an emergency vehicle.... I know over here in the US it is getting harder and harder for families to afford medicine... I can't even imagine it not being there when someone needs it!!

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  7. So sorry to hear of this scary event. Thank goodness that B and Stefan are fine. It must be so stressful to not be able to get the medication you need, when you need it. I would be really upset. This system is flawed and needs to be changed.

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  8. I feel angry just reading this. You have my full support, B deserves the BEST!

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  9. Oh Lynette, how awful for all of you. How sad that this had to happen and should NOT HAVE happened. I don't even want to think the worst, thank goodness mom and baby are fine. I say do what you have to do, get their attention and hope it turns around.

    If this does happen again, I hope it doesn't but if so maybe make sure someone is with her at these times just in case. Have a back up plan maybe???

    My heart and prayers are with you.

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  10. So sorry to hear of this incident and thank goodness everyone is okay.

    Good grief ... this is so ridiculous yet is, unfortunately, being heard of more and more often. Keep at them, keep complaining - keep taking it high as you can ... if you've paid your premiums, you are entitled to the service and medications needed. I'd take it as high as possible and demand demand demand an answer and that they sort or change their provider.

    Hugs for you sweet lady.

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  11. What an awful thing, so sorry to hear about the incident, I would be scared and angry at the same time. I must be tough on you both, and the family too!

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  12. Ag sus ons sukkel al jare met die mediese fonds en STeph se medikasie. Niemand gee om nie.

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  13. That's awful...but thank God nothing worse happened (like the scenario of her bathing the baby when the seizure occurred). The American health care system has its faults, but I can't imagine something like this EVER happening here. I mean, they really have no excuse, since B. called a few days ahead to let them know she'd be in to pick up her medication. If this happened to me, I would e-mail my state attorney general and put her on the case. Do you have an equivalent public official you could contact?

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  14. So sorry to hear about the medication problems....so scary! Thankfully B and Stefan were OK and hope it doesn't have to happen again.

    I have had seizures for years, not Epilepsy, the doctor just calls it a "seizure disorder" and take medications daily. I can't even imagine not being able to get my meds when needed. One of my greatest fears when raising my two daughters was that I would have a seizure and something serious might happen to my daughters. I can't imagine how worried you are for B's safety and the safety of your grandchild. Prayers to all!

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  15. So awful! Hugs! Sorry to hear that!!! I would be upset! :(

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  16. Absolutely shocking. You are taking the correct actions.
    Hugs
    Desire

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