Diabetes with a Learning Disability?

We need your  help.  

Back in December we talked about some of the issues faced by families who have a child or young person with a learning disability who then go on to get a diagnosis of Diabetes.

We want to hear about your experiences

Evidence shows that people with learning disabilities die younger from conditions that can be better managed. 

There are a lot of barriers preventing people with learning disabilities accessing public services.  Then even if they do, there are other barriers that makes ongoing care a challenge for people with learning disabilities and their families.

The Learning Disability Programme identified four long term conditions commonly being reported as a causes of death and/or poor health outcomes.

  • Diabetes
  • Epilepsy
  • Heart Disease
  • Dysphagia

Diabetes and LD:

A friend of mine recently had a daughter diagnosed with Diabetes Type 1, her daughter also has ASD.

There was no support for her to manage her daughter’s diabetes and learning disability.  She could find lots of info on diabetes and lots of info on learning disabilities but none for the two together.

I put her in touch with another friend who has a daughter with diabetes who I knew was active in several  groups and she managed to hook her up with another mother in the same position.

I asked her recently how it was going having someone else who understood and she said “it is so good having someone who relates to the asd side too and whose brain I can pick as the focus with diabetes seem to be around food and people don’t seem to understand that asd children have a lot of issues round foods”

How can parents of Children with Diabetes & LD help us?

We want to know about your experiences of getting support, the issues you faced with possible diet changes and similar?  What worked for you?  If you could share tips with one other family in your position, what would you recommend?

We know there are two types of Diabetes but we want to know is there any difference when accessing the support you need.  Is it easier or harder with a specific type?  Do children with type 1 get better support because it’s often diagnosed earlier?  Or is there no difference?

How can parent of Children with Diabetes but no LD help us?

We know that many children can be very specific about what they will or won’t eat, irrelevant of any Learning Disability.  What has your experience been?  How have you overcome the challenges?  Have you any tips that families may be able to try?

Facebook Live Chat?

We are doing a small piece of work with NHS England to look at the experiences of families around access to the services and support they need.

Do you have a child with a learning disability?

Do you have a child with a learning disability and diabetes?  We would love to hear about your experiences.  What has helped?  What were the barriers?  Did you overcome them or are they still an issue?

On 6 February, we will be hosting a small FB Live chat (click here to go to the event to register your interest) to talk to families about this, asking you to share your experiences and tips so we can pass them on to families and NHS England.

 

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