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? WRONG 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"