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So very disappointed in our care providers

Discussion in 'Parents of Children with Type 1' started by SarahsMum, Feb 26, 2010.

  1. SarahsMum

    SarahsMum Approved members

    Dec 30, 2008
    Ive been an emotional wreck the last few days and just feel that like I dont have any energy to fight anymore

    Having a child with complex and multiple medical needs is so much harder than I ever imagined and Im only 15 months into the journey.

    Basically our Paed had referred her to a program in the hospital called ACE, not really for over the phone advice but for what it does for us when we need to take her into emergency.

    For us being on that program means

    We call ACE to say we are coming in and what her presenting symptoms are
    Ace Contact Emergency and by the time we arrive her medical team have been contacted, she has already been traiged and there is a cubicle/resus bay waiting for her, her medical file is already there and she is only seen by a Senior emergency Doctor.

    2 weeks ago we were told that she had been accepted onto the program, great news right?


    Last week while Sarah's endocronologist and Social Worker were away a meeting about ACE was called by the Head endoronologist. He has previousily blocked Sarah from being accepted onto the program.

    He attended the meeting representing the Diabetes team, the Social worker from the Diabetes team also attended (who was have had issues in the past with)

    The result of this meeting was Sarah was removed from the program.

    The Diabetes team have said they provide the same service

    This however was not communicated to me.

    On Saturday Sarah was visibily ill. She slept from 7pm Friday night until 12noon Saturday at which point I decided we couldnt wait it out at home anymore.

    I called ACE to be advised that she was no longer on the program. I need to call the diabetes team.

    Call Diabetes team, they say will let emergency know.

    I arrive at emergency. They didnt know Sarah was coming in.

    Nurse picks sarah up from pram, she flings her arms out and screams from being handled. Opens her eyes, eyes roll back and she closes them and falls back into same sleepy state as she has been in all morning.

    We get told to have a seat in the waiting area, the Dr will be with us shortly and she was traiged as a cat 3.

    One hour later we get called through.

    30 mins after sitting in the cubicle a nurse comes to take her obs, the first obs that have been taken since arriving. The Dr then comes.

    She is asking about her medical issues. On the piece of paper that is printed at triage it says

    "15 month old with Pancreatic Agenesis presenting with lethargy for last 16/24

    Dr is a Jnr Registrar, she is asking questions and Im rattling off the last week. "Been ill from Bronchiolitis, nasal congestion and cough eased yesterday and work of breathing better. Blood Sugars have been fine"

    She writes some notes and then says to me.

    "Who has told you to check her blood sugar levels, its not something that is routine to do at home"

    Holding me tounge I say

    " Sarah has Agenesis of the Pancreas. If we dont check her BSL we are in big trouble"

    So this takes an hour. Then another patient comes into resus and she says Ill be back.

    She returns around an hour later. Orders bloods and a chest xray. Thinks she has a bacterial chest infection and not viral as I had thought it was.

    Over the next hour Sarah is getting worse, she is only responding to painful stimuli and Im getting very concerned at her lathargy. She wont respond to her name and when she does open her eyes she cant focus on anything.

    Nurse asks Dr to come and reassess her.

    She comes back and says, she is just lethargic from the chest infection but I just want to run something by my boss before you go home.

    The consultant comes in. Takes one look and says. Move her to resus now, she is having a constant seizure.

    We move to resus the consultant (who knows Sarah, he is one of the consultants on her general medical team), he puts in an IV and gives her Midazalm and another Anti-Convulsant.

    We arrived in the ED at 12.45pm. The Midazalm was administered at 6.30pm. She was having a seizure the entire time.

    Clearly the Diabetes team do not offer the same service.

    Emergency did not know we were coming in
    We were not seen straight away, but traiged to the waiting room
    We had a Junior Registrar that failed to notice my child was having a constant seizure
    She clearly did not know what Agenesis of the Pancreas means

    I got the offical letter in the mail yesterday. It states

    "with consultation with other health care programs (ie diebetes team) it was decided that Sarah's needs are capable of being met by the support offered through these existing programs" Therefore, at present it was decided that ACE program support is not required"

    Im so disappointed, angry, frustrated, upset, emotional about it all.

    All I want is the best for my child.

    I dont want her left in a waiting room having a seizure and treated by Junior medical staff who clearly where in way over there head in this instance.

    Dr's go home at the end of the day.

    We live with this every single day


    "having a baby is difficult, having a child with diabetes is more difficult, but having a baby with a rare type of diabetes that few understand is extremely difficult and isolating"
  2. StillMamamia

    StillMamamia Approved members

    Nov 21, 2007
    Oh my goodness.:( This is so outraging and sad.

    All I can advise is to write a complaint to the head of the Diabetes Team, with cc the head of the ER team, explaining all this, and saying that their lack of organization and perhaps miscommunication, is unacceptable.

    I would be very upset, but would definitely NOT let this one slip by. Your child's case is very particular, so specific accomodations need to be made.

    I am so sorry this happened. I hope your child is ok now. I hope you find the strength to fight for this.

  3. sooz

    sooz Approved members

    Dec 4, 2009
    What a hard road you are on. It isnt right that you have to fight just to have your beloved baby cared for. Where do you live? I hope they can do what is right and get her the care she needs. My heart goes out to you. :cwds:
  4. deafmack

    deafmack Approved members

    Sep 22, 2006
    I just am totally angered by what happened to you and your precious baby. Is there anyway, you can file a complaint about what happened. (not talking about lawsuit here) The workers you had to deal with totally missed the boat on this one, in fact it was if they were totally not there at all. I feel so bad for you.
  5. wilf

    wilf Approved members

    Aug 27, 2007
    That's really awful - so sorry they have botched their handling of this so badly. Is there any way for you to appeal this dangerous decision? And how is your DD? Hopefully doing better..
  6. joan

    joan Approved members

    Aug 31, 2009
    That is just horrible. I can't imagine why she isn't part of that program. Asking why you check her bs,that is just crazy, inadequate and very frightening. I hope she is doing better and getting the care she deserves.
  7. grantsmom

    grantsmom Approved members

    Jul 29, 2008
    oh my goodness. I am so so sorry you and your daughter had to go through this.. Please update us on how she is doing.

    Have you thought about going straight to the media with this story? Sad to say, I know it seems like once stories like this get out to the public companies/people change their stance on things.

  8. Barbzzz

    Barbzzz Approved members

    Jul 5, 2008
    Karina, I'm so sorry. The care and treatment you and precious Sarah received was absolutely atrocious. I'm not sure what recourse you have in the U.K., but I'd be waving that ridiculous letter under someone's nose and explaining what went on at the ER -- her needs are not being satisfied. They clearly were unprepared for your daughter. There's no excuse for that. ((HUGS)) I wish I had answers; all I can offer is my prayers -- for strength, as well as answers.
  9. Mimi

    Mimi Approved members

    Dec 19, 2008
    That is awful. I'm outraged on your behalf. I hope Sarah is doing better now. It is terrible that you should have to fight so hard for your baby.

    Sending prayers for much needed strength.
  10. Noel

    Noel Approved members

    Feb 17, 2007
    Oh Karina, I am so sorry that you are going through all of this....and Sarah too. I am hoping that your complaints do not fall upon deaf ears so to speak and someone will listen to you and get he back into that program. I am praying for you and Sarah and I will I could offer more than that and that there was something we could do for you!
  11. fdlafon

    fdlafon Approved members

    Apr 22, 2009
    It saddens me to reach such atrocious and unacceptable behavior from medical staff. I am sorry you are dealing with these problems. I hope that baby Sarah is feeling and doing better.
    I agree that a complaint needs to be sent to anyone and everyone you can get to listen, or can think of.
    Their poor decision needs to be re-evaluated for Sarah's health!!!!

    Hugs to you!!!
  12. valerie k

    valerie k Approved members

    Feb 19, 2008
    I cant even begin to wonder why the head endo wouldnt want this program in place. Tell him that you expect his sorry ass in the hospital when you arrive every time you have to go then. I would fight tooth and nail against this. sending prayers to you and your family.
  13. Toni

    Toni Banned

    Sep 14, 2009
    I am so sorry. This sounds like it was completely unnecessary. Is your baby seeing other specialists that could recommend ACE and override the endo? Does she have other issues? Does she see a neurologist? The neurologist is a specialist and maybe could sign off on ACE. You need another endo team. Head endo had no right to override ACE. I would call him up immediately, tell him what transpired as a result of his actions, see if he will change his mind and sign off on ACE. Tell him that if something had happened to your daughter as a result of his actions you will hold him responsible. He may get the drift and you can have ACE reinstated now instead of waiting until you get another team. If this does not work, try to go around the endo. If she has another specialist, call him/her, ask if they can help you get ACE reinstated immediately; that you need to find another endo and do not have time to wait, her needs are emergent, as the current endo made a dangerous decision regarding your daughter's health. You have every right to be disappointed in your team. If you are satisfied and it is just this one head endo, and the endo will now sign for ACE, I might keep the team but would not have the particular endo work with my child. P.S. Go higher up the chain. Head endo reports to someone else. Don't accept his decision.
  14. Becky Stevens mom

    Becky Stevens mom Approved members

    Oct 14, 2008
    Karina Im so very sorry that Sarah is sick and you are being mistreated:( I will say a prayer for your sweet baby and for you. You have enough to deal with without these idiots being incompetent and rude!
  15. SarahsMum

    SarahsMum Approved members

    Dec 30, 2008
    Thanks Everyone

    Its very frustrating to say the least.

    We have had issues with this particular Endo before, he was Sarah's Endo until I requested to change and for him to have no further involvment in Sarah's care. That happened and we have a lovely Endo now but she has been on Leave since January.

    What really annoyed me is honestly I dont care who provides the service of Ensuring Sarah is seen immediatly and only by a Snr Dr but I know for a fact that the Diabetes Team do not offer this service, infact when you call them after hours you get a Medical registrar who basically has no idea.

    Examples of advice Ive been given in the past are

    * Can you give her some coke/fizzy drink in her bottle (when she was 6 months old)
    * Give Panadol and a drink of water to bring down a high BG
    * She had Low BG and ketones over 2.0. I was told to take her pump off for 8 hours:eek:

    One time in the ED we came in with constant Hypo's over 24 hours, the Endo Registrar came in and declared that her Diabetes was transient. Stop her insulin, take her home and bring her to clinic next week.

    Holy Moly she somehow grew a working pancreas overnight!!!!!!

    We have a wonderful social worker who is diplomatically trying to get Sarah back onto the ACE Program, but going up against this head Endo isnt the easiest task in the world.
  16. skimom

    skimom Approved members

    Jan 16, 2008
    Ask the hospital for an "ethics consult" - this is where they bring in an independent ,trained patient advocate who goes through everything (charts, histories,etc etc), arranges meetings with various doctors , etc etc to ensure the patient gets the care they need, that the care plan is written , signed off on etc. and followed.Ethics consults are typically used when decisions have to made regarding care that could cause ethical dilemmas ( ie is this the right things to do etc ) but it is also a good way to get help by an independent patient focused advocate. It does not necessarily assign blame rather it helps the patient and family get the information they need
  17. joan

    joan Approved members

    Aug 31, 2009
    I hope Sarah is doing better. I just have such a hard time understanding why we must fight for help from the medical community when what we need is care and compassion. That is there job. Its so depressing what you and your daughter have been put through. I hope you get some help with all of this. Sending my best wishes to Sarah for a quick recovery.

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