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Hi, new to the forum and in need of support

Discussion in 'UK' started by Purple Princess, Jan 4, 2012.

  1. Purple Princess

    Purple Princess New Member

    Joined:
    Jan 4, 2012
    Messages:
    1
    Hi,

    I'm Kirsty, I have three children, 2 boys and a girl. Lottie, my daughter is 5 and was diagnosed T1 at 3 and a half. Her blood sugars have been very difficult to control and because of this she started pumping in April 2010.

    Lottie started school in September and we are having real problems with the school. We are very fortunate that Lottie has an SEN statement, this is for her diabetes as well as the fact that Lottie has selective mutism which causes major concerns as she doesn't communicate when she feels unwell.

    Lottie has been allocated 32.5 hrs a week funding for 1:1 care. After the initial teething problems were sorted and I stopped supervising her 1:1's mistakes started to happen. Lottie has two members of staff assigned to her, one in the morning and one in the afternoon. All of the mistakes have been made by the morning person and range from not recording insulin doses to not treating hypos. There has also been times when insulin was overdosed and not double checked, nor were we contacted when her blood sugars were massively high.

    Having raised these issues with the school and accessing more training these mistakes have continued to happen, completely destroying our faith in this 1:1. As the person is employed solely to look after Lottie, changing Lottie's carers would result in her losing her job and this means that disciplinary procedures have to be followed.

    We now have to wait on tenterhooks to see if this person will do something dangerous again, now that she has been formally warned. I feel awful that her job is on the line but equally why should my daughter have to be put in this situation. How serious does this have to get?

    The headteacher at the school has been really difficult and said some very hurtful, mean things regarding Lottie's care, the stress it puts on the school and my interference. One of the comments was "don't you think it might be worth finding another school for Lottie as we obviously can't meet your high standards".

    I really need some advice and hopefully support from people who truly understand diabetes and the implications of the illness. Sorry I ranted but this is a highly emotive subject.

    Thank you for listening/reading x
     
  2. kiwiliz

    kiwiliz Approved members

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    Dear Kirstie. I am really sorry to hear you are having trouble with this one person. You have every right to expect school to take care of your daughter properly - they are acting "in your place" when she is in their care. Persevere with your requirements and don't feel bad about the woman who was formally warned losing her job. If she can't fulfill her duties she shouldn't be there. Your priorities have to be the health of your child. I also wouldn't let the head teacher palm you off with "perhaps you should move". That is an incredibly unprofessional and lazy approach to a problem. This is, in effect, a staffing problem. You sound as though you are half way to having an ideal set up (afternoon guy LOL). Just make sure they get someone in who can do the morning job properly. :)

    PS. I think no-one has answered you yet because you have posted this in the UK section. If you pop this over in the introductions section you will get lots of responses. Welcome to the forum. Liz.
     
  3. selketine

    selketine Approved members

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    I also want to say welcome to the boards. I didn't reply initially because I don't know what regulations or policies are in place in the UK for caring for children with diabetes at school. I can't imagine why the head of the school would defend the morning employee who is making very clear mistakes. I think it is the worst position for a parent to leave their child in the care of people who are making mistakes but the school system is defending them - making the parent out to be too demanding.

    I don't know what other procedures might be in place but it seems that medical mistakes would be treated more seriously - as this literally puts your child in danger - than other sorts of mistakes. I don't know if you can appeal to any agency outside of this school who has oversight - this would be ideal if the situation does not improve.

    Keep us posted on how it is going.:cwds:
     
  4. emm142

    emm142 Approved members

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    Hi, Kirsty! I'm 19 and also from the UK, and I was diagnosed with type 1 when I was 14. I started pumping when I was 15 - it's nice to see another UK pumper on here. :)

    I wish I could help with your questions, but I have very little experience with the school system and diabetes care as by the time I was diagnosed I could do all my own care. You might struggle to find answers here because most members are from the US - have you thought about contacting Diabetes UK or a similar organisation to see if they can offer you any support?

    I'm sorry, it sounds like a really tough situation. :(

    By the way, more people will probably reply if you post in the Parents of Children with Type 1 section, as that's where most of the activity is.
     
  5. Lisa P.

    Lisa P. Approved members

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    I don't understand your system or laws, but I know here sometimes when one personnel member is not suited to a job, there can be a transfer within the school or district. That way the person is not losing a job, just changing a job. If she doesn't fit the job well, it might be a relief for her so she'd be your ally in the move, rather than fighting you. It would remove from the school the requirement to document multiple mistakes in order to fire someone, because it could all be done voluntarily. You might even be able to talk to a few of the potential candidates for the job before the transfer happened. I know if I were a classroom assistant, I would consider a one on one position to be a real gem, much less stressful than assisting an entire classroom, so you may find you have several folks from the system willing to make the move.

    Best to you in finding a good solution. I know it is very frustrating when folks simply cannot understand the urgency and importance of good diabetes care.
     
  6. Tommo

    Tommo Approved members

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    Hi - I am in the UK too - so sorry to hear about all your troubles - it must be very worrying for you. My son, Tom, who was diagnosed at 18 months and is now nearly 7 is also pumping. I don't know if your diabetes team has been in to school - but Tom's nurse came into school and gave all the staff involved with care of Tom, a talk about the seriousness of diabetes. What diabetes means and what the pump does and how insulin is delivered. Then they set up a protocol which all the staff must follow - for example before lunch if his blood is between 4 and 6 they must give 0.9 units. there is a chart for corrections as well. The chart tells them when they must finger prick etc. The diabetes nurse explained how very serious a low/high blood sugar can be and so far it seems to be working. (of course there are the occassional worry moments!) I don';t know if this helps at all - but do get in touch if I can tell you any more and hope things improve for you.
     
  7. Alba37

    Alba37 Approved members

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    Hi Kirsty

    Welcome to CWD. Sorry to read about your problems. My son was 13 when he was diagnosed so school wasn't really a big issue. I know lots of families have faced problems with school though even with a statement. We have 4 different UK email support groups, the main UK Parents of Children list is particularly busy but you are likely to get more UK school advice there. See the lists on the right hand side of the website http://www.childrenwithdiabetesuk.org/ Do stick around the forum too, there are a great bunch of people here.

    Aileen :)
     
  8. Flutterby

    Flutterby Approved members

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    HI and Welcome.

    I'm sorry you are having a difficult time with the school. Dont' feel bad about this person possibly loosing their job. They have one job, and that is to take care of your child. If they don't do it right then they shouldn't be there. Its your daughters life they are taking care of. I don't know how the laws work there but here, they can't make you move because they don't want to be helpful.

    Is it possible for the afternoon person to do all day?
     
  9. morgan

    morgan New Member

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    May 1, 2012
    Messages:
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    Hi Kirsty

    Sounds EXACTLY like what my partner and I went through. Thankfully it has settled down now but I know how you must feel.

    We had to put lots of pressure on the school to take it very seriously and that meant lots of meetings. I would encourage you to keep the pressure on them to ensure they are following the correct procedures with your child. We printed out all the ABC rules but in a simplified version so it was really clear what they needed to do.

    I hope things get better for you.
    Morgan
     

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