Wednesday, 4 March 2015

A day in Parliament

The All Party Parliamentary Group for Diabetes held a meeting today (4th March) to launch a report on diabetes education and peer support, something they have been looking at over the past year. If you want to learn more about this work you can read my blog: A year on diabetes education.

The great and the good were in attendance and it was a privilege to be allowed to speak before ministers responded to the report's launch.

This is what I said:

The value of structured education and the wider value of peer support

I’d like to tell you a story.

Four years ago, on the 9th March I stumbled into a doctors surgery to be told I needed to go to hospital, it was serious, it was life threatening.

I was told I had type 1 diabetes and would need to inject insulin for the rest of my life.

A week later I was discharged with a diagnosis of type 2, handed a bag full of medication and two words of advice:

“Eat Healthy”

I went home with a condition I knew little about, no knowledge of what I needed to do beyond taking the pills and I needed to eat healthy. I felt very alone!

The following day I rang my GP surgery and because of an amazing practice nurse I started to feel supported. She spent time educating me and arranged a one day course on type 2 management. When I got my correct diagnosis of type 1 she arranged a half day carbohydrate counting course.


When my diabetes care moved to Sheffield, I was offered a 5 day DAFNE course. It was a significant improvement on the education I’d received at Doncaster.

DAFNE is a life changing course.

Without it, I wouldn’t have known what to do when I was ill - I’d have been hospitalised at least three times due to illness without this knowledge.

Without it, I wouldn’t know how to alter my insulin doses to enjoy hiking activities.
Without it, I wouldn’t know how to safely manage my condition when having a drink at the local pub.
Without it, I would never have spoken to some else with diabetes.
Without it, my reliance on the NHS would be significantly more and
Without it, I suspect my risk of life impacting complications would be much higher.

Peer Support and Our Diabetes

But despite the value DAFNE has brought to my self care management there are gaps and a significant one is how to deal with the emotional side. DAFNE provided me with the tools and knowledge to manage the treatment but it totally missed how to manage the emotional.

In light of this I founded (with another person with type 1) an online support community called Our Diabetes. We come together every Tuesday on Twitter, a social media platform, to discuss diabetes and each chat is hosted by a member of the community. The vast majority of chats run by people with diabetes relate to emotional well-being, titles such as.

It has allowed people in the community, like Diane Moran, to re-engage with their diabetes self-care. Diane explained after attending a DAFNE course, and I quote:

"I had heard so much about DAFNE from getting involved with the diabetic on line community [...] and was really in a ‘muddling along phase’ with my type 1 diabetes and getting nowhere fast. It was much easier than I thought to put my name down (via my hcp [...]) and I was exceptionally lucky to be able to attend the [...] course"

Throughout the week the community share tips, provides encouragement, share experiences and sometimes it’s just there to say “me too!”. As Scott Benner (a parent of someone with type 1) put it in his blog:

“You haven’t been hugged until you’ve been hugged virtually by a stranger whose only desire is for you to not feel alone. Now that’s support!”

Our Diabetes isn’t just for those living with the condition but for everyone with an interest in it. We actively encourage healthcare professionals, charities, partners and even (dare I say it) politicians to be involved too!

In fact one chat was hosted by the chair, Adrian Sanders, and was used to obtain evidence for the report launched today. I’m very grateful to the APPG for looking at this important subject and for reaching out to the community for their thoughts, some of which you can see on the monitor currently.

The Education Act

But I’d like to end with a bit of history.

On January 19th 1944 Rab Butler's Education Act cleared its second reading in the House of Commons. It paved the way for free secondary education for all.

People wanted to believe that after the war Britain would be a better place - a New Jerusalem was the phrase of the time - a country worth fighting for.

It’s time that diabetes education should to be provided to all. It shouldn’t be for the “lucky” few.

It changes lives for the better.
It will save the NHS money.
It’s definately worth fighting for.

Thank you.

The Report

You can read the APPG for Diabetes report: Taking Control: Supporting people to self-manage their diabetes here.

The JDRF UK news article about the report and the Diabetes UK news article.