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Welcome to the CWD UK Information Section
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These pages offer information and links
specifically tailored for families living in the United Kingdom.Families of Children with Diabetes living in the UK
UK Children with Diabetes on-line community and email support list.
Having a child diagnosed with type 1 diabetes can be a frightening experience. Join our UK email support and discussion group, which will put you in touch with other families who are raising children with diabetes. The forum is open to anybody who wants to discuss all of the personal and scientific aspects of this condition and how it affects their family’s lives. We aim to support families with newly diagnosed children or any families who wish to discuss raising a child with diabetes.
Email and Mailing Lists
Join our UK emailing support and discussion group which will put you in touch with other families who are raising children with diabetes.
Sign up for the CWD UK mailing list
http://lists.childrenwithdiabetes.com/cgi-bin/mailman/listinfo/ukMailing Lists - What are They Anyway?
A mailing list is a group of users who share information on a common topic. Mailing lists allow messages to be distributed to all of the list's subscribers by submitting a message to a single address. When a message is sent to the list address, it is forwarded to all subscribers of the list, who each receive a copy of the original message.To subscribe, type your email address tick "Immediate Delivery," and click the "Submit" button. You will receive an email confirming your subscription to which you must reply. This prevents people from signing others up to the list. To unsubscribe, type your email address in below, check "Unsubscribe," and click the "Submit" button. You will be removed immediately. No confirmation is need to unsubscribe.
We've added a new UK Parents' Voices section, and our first UK parent's story is from Alison Gordon who writes about Ozzie's diagnosis.
CWD UK Forums
Join us at the CWD UK Forums to share and learn.
UK Children with Diabetes Advocacy Group
Living with diabetes and school issuesCurrently in the UK, many children with diabetes are being denied proper care and support. Many more children are being diagnosed with type 1 diabetes and at an earlier age. Many are pre-school children. Diabetes care has changed dramatically over the last few years. Children are testing and injecting more frequently and Insulin pumps are now much more common. This change in care means that more support in schools is required than in the past. We are a group of parents living in the UK who are trying to raise awareness about the discrimination in schools that many children with diabetes encounter. Children have been muddling through, with mediocre or poor support in school for many years; we need to address these issues now, so that children with diabetes have a better quality of life right now and a future with fewer complications. Taking care of a young child with diabetes takes more one-on-one time than taking care of a similar child without diabetes, and schools should take this into account. Schools need to be able to access funding to provide extra support in the classroom if require. Older children's needs are often ignored altogether. We should not tolerate this discrimination in schools because of our child's medical status.
We are currently working with JDRF, Diabetes UK and INPUT to raise awareness of the problems in schools.
If you have encountered problems please let us know by joining our on-line community, dedicated to supporting families in the UK raising a child or young person with diabetes. To join the UK CWD Parents mailing list support list, see below.
Presentation to the Diabetes UK Annual Professional Conference:
UK Children with Diabetes Advocacy Group
A report by the UK Children With Diabetes Advocacy Group, investigating the range of contemporary educational experiences of children with diabetes at school in the UK today.
- Download the Report (November 2008) (PDF, 600 KBytes)
- Download the Report (April 2007) (PDF, 455 KBytes)
- Accessing Support for Children with Diabetes in School (PDF, 52 KBytes)
Diabetes Basics
Symptoms
- NetDoctor.co.uk Diabetes in children
http://www.netdoctor.co.uk/diseases/facts/diabeteschildren.htmWhat is type 1 diabetes?
- Children with Diabetes.com
http://www.childrenwithdiabetes.com/d_0n_100.htm- Diabetes.org.uk
http://www.diabetes.org.uk/Guide-to-diabetes/What_is_diabetes/What_is_diabetes/- Patient.co.uk
http://www.patient.co.uk/showdoc/27000147/- Animated: Novo Nordisk Diabetes Services
http://www.whatistype1diabetes.com/- Juvenile Diabetes Research Foundation (JDRF)
http://www.jdrf.org.uk/diabetesBenefits and Allowances in the UK
If you have a child under 16, with type 1 diabetes you MAY be able to claim Disability Living Allowance.
You should be given information by your diabetes clinic about Diabetes UK, family support groups in your area, and how to claim Disability Living Allowance to help cover the home supervision of your child now that s/he has diabetes.
- Disability Allowance for a child under 16
http://www.dwp.gov.uk/lifeevent/benefits/disability_liv_allowance2.asp- Diabetes UK information on claiming DLA for a child under 16
http://www.diabetes.org.uk/Guide-to-diabetes/Guide_to_Diabetes_Archived_pages/Disability_Living_Allowance_-_claim_for_a_child_under_16/- DLA Appeal
These notes are aimed at families who are unhappy with the decision made, following their claim for Disability Living Allowance (DLA) for a child under 16.
http://www.diabetes.org.uk/infocentre/inform/downloads/DLAappeal.docIf you receive DLA at the higher or middle rate you may be able to claim Carers Allowance (CA).
Are you age 16 or over, spending at least 35 hours a week looking after someone who is getting, or waiting to hear about Disability Allowance at the middle or highest rate? and do not earn above £79 a week.
Check the Carer's Allowance page
http://www.dwp.gov.uk/lifeevent/benefits/carers_allowance.asp#canigetWhat Diabetes Care To Expect For Your Child
- What care to expect when your child has diabetes from Diabetes UK
http://www.diabetes.org.uk/Guide-to-diabetes/Living_with_diabetes/Caring_for_someone_with_diabetes/For_carers_of_children_with_diabetes/- National Institute for Clinical Excellence
NICE Guidelines: CG15 Type 1 diabetes: diagnosis and management of type 1 diabetes in children and young people
- Quick reference guide
http://www.nice.org.uk/page.aspx?o=213673- Full guideline
http://www.nice.org.uk/page.aspx?o=213902- Your local care
http://www.diabetes.org.uk/Guide-to-diabetes/What_care_to_expect/Your_local_care/Is Your Child Getting The Right Support?
- Diabetes UK: Children failed in diabetes test
http://www.diabetes.org.uk/About_us/News_Landing_Page/2614/- Diabetic children fail to meet blood sugar targets: Reuters Health
http://www.ucsfhealth.org/childrens/health_library/reuters/2004/09/20040922elin005.html- Diabetes control Landmark study DCCT
http://www.childrenwithdiabetes.com/d_0n_a10.htm- Carb counting
http://www.childrenwithdiabetes.com/d_08_d00.htm- Carb counting
http://www.diabetesnet.com/diabetes_food_diet/carb_counting.php- Diabetes Mall. Provides excellent information, support and products focused on diabetes.
http://www.diabetesnet.com/- Bolus on board. Unused Insulin rule: Brilliant table from Diabetes Mall
DAFNE. Dose Adjustment For Normal Eating
http://www.diabetesnet.com/diabetes_control_tips/bolus_on_board.php
http://www.diabetes.org.uk/Guide-to-diabetes/Treatment__your_health/Structured_Education/- JDRF KIDSAC, pack for newly diagnosed children, includes Rufus or Ruby, the bears with diabetes
http://www.jdrf.org.uk/kidsacDiabetes At School For Teachers
One in 700 children of school age has diabetes. It is therefore likely that you will teach or supervise a child with the condition at some time.
- Diabetes at School From Diabetes UK
http://www.diabetes.org.uk/Guide-to-diabetes/Living_with_diabetes/Teenzone/- What all staff NEED to know from Diabetes UK
http://www.diabetes.org.uk/Guide-to-diabetes/Living_with_diabetes/Caring_for_someone_with_diabetes/For_carers_of_children_with_diabetes/- Teachernet. Supporting pupils with medical needs
http://www.teachernet.gov.uk/wholeschool/healthandsafety/medical/- Disability Discrimination Act 1995 - protection against discrimination in education
http://www.diabetes.org.uk/Guide-to-diabetes/Living_with_diabetes/Everyday_life/Work_and_diabetes/- JDRF Classroom Tool Kit
http://www.jdrf.org.uk/schools- Hypoglycemia Sheet
For Parents - Taking Diabetes to School
- School card from Diabetes UK
http://www.diabetes.org.uk/Guide-to-diabetes/Living_with_diabetes/Caring_for_someone_with_diabetes/For_carers_of_children_with_diabetes/- Poster Quick Hypo guide from Diabetes UK
http://www.diabetes.org.uk/Documents/Guide%20to%20diabetes/Hypo%20poster.pdf- Children with diabetes at school
http://www.diabetes.org.uk/Documents/Guide%20to%20diabetes/Children%20with%20diabetes%20at%20school%20-%20what%20all%20staff%20need%20to%20know.doc- Signs and Symptoms of Hyperglycemia and Hypoglycemia (Children) (Novo Nordisk Posters For School)
http://media.novonordisk.com/media/getMedia.asp?mb_guid=B55A9707-79CF-4DA6-9418-0A5CA99F509E.pdf&realname=INS1003-12-02.pdf- One Page Instruction leaflet for UK teachers in mmol
http://www.childrenwithdiabetes.com/uk/OnePageGuide.doc
This document can be adapted to suit your own child. Check it out with your diabetes team first. This is only an example. Change as needed.- A Child in Your Class has Type 1 Diabetes. A4 sheet
Edit to match your child's needs- Information for Substitute / Supply Teachers
http://www.childrenwithdiabetes.com/uk/SubstituteTeacher.doc
To be kept at front of child's class register, for supply teachers, information. Can be adapted to suit your child.- Amongst Other Things (PDF, 630 KB)
http://www.childrenwithdiabetes.com/uk/AmongstOtherThings2004.pdf
A story about Tommy by his MumLinks for For Children with Diabetes
- The Travels of Rufus and Ruby, the Bears with Diabetes
http://www.childrenwithdiabetes.com/rufus/- Rufus and Ruby Visits to the UK
- The Dawkes Family
http://www.childrenwithdiabetes.com/rufus/ruby3_Dawkes.htm- The Jacombs Family
http://www.childrenwithdiabetes.com/rufus/ruby3_Jacombs.htm- The Harpum Family
http://www.childrenwithdiabetes.com/rufus/ruby3_Harpum.htm- For more information about the travels of Rufus and Ruby, or to add your family to the travel list, please contact Laura.Billetdeaux@childrenwithdiabetes.com.
Websites Of Interest For Kids
- Kids Clubhouse
http://www.lifescaneurope.com/uk/club/- Kids Club
http://diabetesnow.co.uk/kids/- TEAMHUMMINGBIRD
www.communigate.co.uk/wilts/teamhummingbird
The primary aim is to encourage those with diabetes to take up the sport of cycle time trialling but links are provided to ALL the other major governing bodies of cycling and cycle sport. Please review them to your own satisfaction.- Physical Activity And Diabetes
http://www.diabetes.org.uk/Guide-to-diabetes/Treatment__your_health/Keeping_active/- Sports Corner
http://www.childrenwithdiabetes.com/sports/About Insulin Pumps
- Diabetes UK on Insulin pumps
http://www.diabetes.org.uk/Guide-to-diabetes/Treatment__your_health/Treatments/Insulin/Insulin_pumps/- Pumps in the UK by John Neale of Insulin Pumper UK
http://www.diabetesmonitor.com/pumps_uk.htm- Insulin pumpers UK
http://www.insulin-pumpers.org.uk/
Part of an international charity promoting the knowledge and use of insulin pump therapy to treat diabetes.- NICE guidance on insulin pump therapy in the UK
http://www.nice.org.uk/page.aspx?o=58214
Full Guidance on the use of continuous subcutaneous insulin infusion for diabetesParents In The UK Whose Children Use An Insulin Pump
- Andrew Dysch looks back at the first 11 months, since his son Sam started using a pump
http://www.insulin-pumpers.org.uk/11months/- Danielle's Pump
http://hometown.aol.co.uk/babzwatson/myhomepage/newsletter.html- Alison Orchard pushed hard to get a pump for her 11-year-old son Steven. She fought and won.
http://www.insulin-pumpers.org.uk/thebest/Insulin Pump Manufacturers And Suppliers
- Accu-Chek (member of the Roche group)
http://www.disetronic.com/
Accu-Chek Spirit and Accu-Chek Combo insulin pumps in the UK and Ireland.- Medtronic
http://www.medtronic.co.uk/UK/health/diabetes/diabetes_overview.html
Paradigm 712, Paradigm 512, Paradigm 511 and the minimed 508 pumps, together with a range of associated products- Animas
http://www.animascorp.com/
Newly arrived in the UK distribution DiagnosysMedical.- Pump Wear Inc
http://www.pumpwearinc.com/
Offers pump friendly clothing- Funky Pumpers
http://www.funkypumpers.com/
Offers pump bags, pouches, packs and the likeProducts
- Insulins available in the UK
http://www.diabetes.org.uk/Guide-to-diabetes/Treatment__your_health/Treatments/Insulin/Insulin_and_pens_available_in_the_UK/- Insulin Glargine (Lantus) Basal insulin
http://www.diabetes.org.uk/Guide-to-diabetes/Guide_to_Diabetes_Archived_pages/Insulin_glargine_Lantus/- Insulin Detemir Basal insulin
http://www.diabetes.org.uk/Guide-to-diabetes/Guide_to_Diabetes_Archived_pages/Insulin_detemir_Levemir/- PenMate®
Increases confidence and reduces perceived pain
http://www.novonordisk.com/diabetes/public/insulinpens/novopen3/penmate/default.asp- Medical Shop is an online source of diabetes supplies for families in the UK
http://www.medicalshop.co.uk/Meters
- Life Scan UK
http://www.lifescaneurope.com/uk- Therasense United Kingdom
http://www.therasense.co.uk/- The GlucoMen range of blood glucose meters
http://www.menarini.com/estero/uk/menarini_products_homeglucotest.htm- Accu-Chek
http://www.accu-chek.co.uk/gb/rewrite/home/en_GB- Bayer
http://www.bayerdiabetes.co.ukGeneral Useful Links
- Diabetes UK
http://www.diabetes.org.uk
Diabetes UK is the leading charity working for people with diabetes- Children with Diabetes.com
http://www.childrenwithdiabetes.com/- Insulin Pumpers UK
http://www.insulin-pumpers.org.uk/
Part of an international charity promoting the knowledge and use of insulin pump therapy to treat diabetes.- INPUT
http://www.input.me.uk/
INPUT is a patient led advocacy group raising awareness of insulin pump therapy and other diabetes technology including CGM It gives facts about the technologies and about NHS funding of them.- Dr Bill Lamb Runs 500 miles to help children get an Insulin pump
http://www.run500miles.com/- Diabetes Mall
http://www.diabetesnet.com/- UK JDRF
http://www.jdrf.org.uk/- Kidsdiabetes.co.uk
http://www.kidsdiabetes.co.uk/- The Diabetes Federation of Ireland
http://www.diabetesireland.ie/view.asp?id=1Coeliac Links
Coeliac and Thyroid problems are more common in people with type 1 diabetes. These conditions should be screened for at intervals by your diabetes clinic.
- Coeliac UK
http://www.coeliac.co.uk/index_flash2.html Supporting people with Coeliac and DH- The gluten free message board (Coeliac and D H)
http://members2.boardhost.com/glutenfree/index.html?999235741Jackie Jacombs
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Last Updated: Monday March 25, 2013 11:30:22
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