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J

Joe P 2002

New Member
Relationship to Diabetes
Type 1
My son has Down syndrome and an omnipod 5 pump and dexcom sensor for obvious reasons he needs some support with administering his bolouses . A charity he attends one day a week has recently excluded him as they are unable to assist with carb addition and supervise him to self administer without being signed off by a NHS or Dexcom professional and the trustees are not happy for him to attend As they feel it affects their insurance.has anybody else hit this problem ..it is a group he has attended for some time
 
At the primary school I work at, teachers help the diabetic children, they do a training which I think is organised by the hospital nurses. Could something like this be arranged for the charity? Might be worth talking to your son’s DSN and the charity people to see if they would agree to some training, that might perhaps make them feel more confident. At the end of the day they are probably scared of doing something which might hurt him, and the trustees are just covering their backsides. I think I have a tendency to forget how scary diabetes can be if you are not familiar with it, and having to take responsibility for someone else’s child (even a grown up one) is not the same as looking after your own.
The other option is, could you go with him to deal with the diabetes? I agree you shouldn’t have to, but it might fill the gap until you get some training sorted.
 
It may be worth talking to Diabetes UK on 0345 123 2399, they may be able to provide some guidance. It seems unfair that your son is being excluded after attending so far.
Hope you manage to get some help
 
Goodness @Joe P 2002 how heartbreaking for you :(

I’m sure it must be possible to find ways around the concerns of his group.

There are many schools and colleges up and down the countries (along with community groups and charities like scouts, guides, youth groups, churches, etc which have T1 children involved, and find ways to facilitate them being involved and taking part in activities.
 
Joe P 2002 said:
My son has Down syndrome and an omnipod 5 pump and dexcom sensor for obvious reasons he needs some support with administering his bolouses . A charity he attends one day a week has recently excluded him as they are unable to assist with carb addition and supervise him to self administer without being signed off by a NHS or Dexcom professional and the trustees are not happy for him to attend As they feel it affects their insurance.has anybody else hit this problem ..it is a group he has attended for some time
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I would ask his social worker if a PA can support his attendance to that group or if he can have a Personal Budget to pay for a PA, the second option allows you to pick someone he knows to support him. The provider needs to seek opportunity to upskill its workforce rather than risk discriminating against a vulnerable adult because of their disability. Our local Diabetes service have Champions who provide training to providers, carers and families for free. Is this an option in your area? I wish you well. 🙂
 
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Joe P 2002 said:
My son has Down syndrome and an omnipod 5 pump and dexcom sensor for obvious reasons he needs some support with administering his bolouses . A charity he attends one day a week has recently excluded him as they are unable to assist with carb addition and supervise him to self administer without being signed off by a NHS or Dexcom professional and the trustees are not happy for him to attend As they feel it affects their insurance.has anybody else hit this problem ..it is a group he has attended for some time
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That's really sad! I'm wondering if it's worth asking your local NHS Community Team for People with Learning Disabilities (your GP will have the contact details if you don't) if a Nurse from that team can support/train the charity's staff? As you probably know, the charity has a legal obligation to put in place 'reasonable adjustments' to enable your son to continue attending.

Again, you may already be aware that there are accessible resources designed for people with intellectual disabilities who have diabetes: this book is a good one. Your son may find it helpful - and so may the charity's workers.

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