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carla1975

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7
Location
Berkshire
Hi everyone.Me and my daughter who is 12 and was diagnosed 3rd may this year have been trying to find groups for kids/teens to go along to and just get a bit of support or just have a sound off. Not finding it too easy as they are all based for adults. We live in the Reading,berkshire area and would love to know if anyone knows of any groups or anyone in the same situation would like to start up a little group or just get together for chats,cuppa`s or the odd day out. :D :D
 
Hello! and welcome-with ideas like that you'll be an asset here! I guess best way to get interest would be a poster in Doctors surgeries.
 
Hi, the GP surgery practice manager or the diabetes clinical/unit manager can be approached via a prebooked appointment . At this appointment you can raise this question and ask them to steer you in the right direction. Any posters etc have to be okayed by these HCP before being displayed on clinic/surgery walls or reception areas. It is relatively easy to get the right information and access via this route, they will probably have knowledge of other children and their parents who would welcome a support group setting up in your area. And may ask you if you dont mind your details , name and contact number being passed on to them, for other parents to contact you. Hope this helps? Anna.x :D
 
Thanks for your ideas. :D We have approched the doctors surgery and our diabetic nurse who,im sorry to say are not really that much help,thats why i thought it would be good to start something up basically to give each over a bit of support and for the kids to get together and have the odd day out,even if its just meeting up and going to the cinema or local park with children who are all in the same situation and dont feel they are going to be judged or feel embarest to do injections in front off ect ....As mum to laura who was only diagnosed on may 3rd this year i dont feel there is any support for parent who`s children have been newly diagnosed. It was such a shocker to be told at the doctors to go straight to the hospital,that her levels were touching 30,told she had type 1 diabetes(i will never forget the look of fear on lauras face)that she wouldnt be able to leave hospital until she could inject then 2 nights later they sent us on our way. We were told we would get the support and care we needed from our diabetes nurse so we put our faith in her thinking she was our new fairy god mother,how wrong were we! She never answers her phone,replies to texts,never visits when she says she is,we feel very let down.Luckly i have a friend who has been a great support as her daughter was diagnosed a year ago but as i have learnt,no diabetic is the same.
 
I live in East Kent and just saw a diabetes charity shop in a small village (Tankerton nr Whitstable) I was out for something totally different but popped in anyway. They told me of a local support group, gave me a few leaflets etc and I got 2 cheap books! Is there a charity shop near you that may have equally helpful proprieters?
 
carla1975 said:
Thanks for your ideas. :D We have approched the doctors surgery and our diabetic nurse who,im sorry to say are not really that much help,thats why i thought it would be good to start something up basically to give each over a bit of support and for the kids to get together and have the odd day out,even if its just meeting up and going to the cinema or local park with children who are all in the same situation and dont feel they are going to be judged or feel embarest to do injections in front off ect ....As mum to laura who was only diagnosed on may 3rd this year i dont feel there is any support for parent who`s children have been newly diagnosed. It was such a shocker to be told at the doctors to go straight to the hospital,that her levels were touching 30,told she had type 1 diabetes(i will never forget the look of fear on lauras face)that she wouldnt be able to leave hospital until she could inject then 2 nights later they sent us on our way. We were told we would get the support and care we needed from our diabetes nurse so we put our faith in her thinking she was our new fairy god mother,how wrong were we! She never answers her phone,replies to texts,never visits when she says she is,we feel very let down.Luckly i have a friend who has been a great support as her daughter was diagnosed a year ago but as i have learnt,no diabetic is the same.
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Hi, o dear, you really should have more support from your diabetic nurse, is she in your GP's practice? or at the diabetes clinic? you can request to have an appt with the practice / clinic manager and discuss this with them, its their responsibilty to see that you recieve proper care and follow up support also...laura your daughter has patient charter rights. Thank goodness for the support from your friend , could she go along with you to the appt ? you really do need to get better support for laura and yourself . Please let us know how you both go on. Anna.x :D
 
Hi Carla

Have you had a look at this:http://www.diabetes.co.uk/kids/index.html
It may help
 
I am in Australia so there isn't much of a chance to meet in person. I help organise a local group of about 40 parents of children with diabetes where I live. We have a facebook page (private closed group), email and for those not on computers we phone or send out invitations for our 3 monthly get-togethers. We meet at local parks or tourist attractions around our area. I can't say many of our teenage members show up much as they really don't want to be involved or play with the little kids anymore (just isn't cool). We are lucky that we also have a Camp diabetes programme that has 2 camps for under 8's per year (with parents) and weekends and weeks away for the older kids (without parents). JDRF are usually the best people to contact for Camp info.

If you want to get a local group going just put up some flyers around the hospital clinic and talk to other parents at clinic and see if they are interested. I know we all like to respect each others privacy and can stare blankly at the tv while waiting to see the doctors, DN (or whoever) but it is so much more enjoyable once you get to know a few other parents and the kids get to know each other. We help out new members with the frustations that come with diabetes and the tips from other parents are sometimes more practical than what is offered by doctors who don't actually realise the responsibilities you have in a day (and making diabetes fit into that picture).

All the best getting some parents to come together.

Only editted to fit up typo.
 
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