No Need to DI Campaign

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Thank you very much for supporting our DI Awareness Month during October

We are most grateful for all your support, stories, posts, shares and signatures over the last month. This campaign has shown without a doubt that many non-endocrine health care professionals do not know what DI is, and immediately confuse it with diabetes mellitus.

We have seen some truly devastating accounts, from loved ones of patients who lost their lives, because the HCPs involved did not understand what DI is, how it should be treated and how it should be monitored. 

  

What will happen next?

We are continuing to work with an incredible team of dedicated endocrinologists including Prof John Wass, Dr Malcolm Prentice, Dr Miles Levy, Prof Stephanie Baldeweg, Dr Helen Simpson, the Society for Endocrinology and others. Some of this work has been ongoing for months and will be continuing for the foreseeable future, as this is no small task.

To have any new name of a medical condition recognised by HCPs and patients, there are steps we have to follow. We will be ensuring that DI is on the national curriculum for all registered nurses.

We are looking into an alert card similar to the steroid alert card. We want to ensure patient safety in any hospital or A&E setting, by way of alerts in place and that patients have access to their usual consultant if they are hospitalised.

We will share any updates with you as soon as we can.

To help you stay safe

DI Adult 6X4Although the name change is for pituitary insipidus desmopressin dependent (PIDD), we cannot officially use this as yet, but please do feel welcome to use it should you need it if you are in A&E or hospital. We appreciate that some patients use other names instead of ‘diabetes insipidus’ too for easier recognition. It is vital that HCPs understand what DI is. We know that if the ‘diabetes’ part of the name is still mentioned, it causes confusion and much frustration. Our awareness wristband includes the words ‘desmopressin dependent’

Please continue to sign or share our petition. The more signatures we have, the more power we have for our campaign. Don’t forget to use #NoNeedToDI when sharing on social media. The petition closes at the end of December 2020.

Resources and Links

  • An introduction to the campaign from Menai Owen-Jones, CEO

  • Charlie's Story - Charlie's sister tells us the tragic story of how her brother lost his life to diabetes inispidus
  • Diabetes mellitus vs. pituitary insipidus comparison table

Download image - to use online

Download pdf - printable version, you may wish to share with your GP or carry with you  

  • Kane's Story - Kane passed away in hospital after going in for a hip replacement but not being given appropriate treatment for diabetes insipidus
  • Joy's DI Story
  • Video from Society for Endocrinology - What is diabetes insipidus (pituitary insipidus - desmopressin dependent)? What causes it? How is it treated?
  • Claire's Story
  • A Parent's Story
  • BMJ Podcast
  • Twitter Chat - Wed 21st Oct @ 7pm
  • Becky's video - DI patient Becky has created this video explaining the differences between diabetes insipidus and diabetes mellitus and why she thinks th ename should be changed
  • Molly's Story - Molly suffered hyponatremia while in hopsital during the COVID-19 pandemic