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.
The campaign ‘No Need To DI’ reached over 70,000 people on our social media. We received 221 comments and our posts were shared by 722 and over 4.600 signed our petition to change the name.
We have seen 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.
We continued 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 and are delighted that the name change is being adopted.
To have any new name of a medical condition recognised by HCPs and patients, there are steps we have to follow and a lot of communication to ensure everyone knows and understands the change. For a while both names will be used.
It is vital that people with conditions like adrenal insufficiency and diabetes insipidus feel safe going into hospital and able to trust they will receive the necessary treatment.
We hear too many stories of pituitary patients being denied their vital medications (e.g. hydrocortisone and desmopressin) when in hospital or A&E and it is unacceptable. These drugs should never be omitted
Due to the pandemic, the focus was not on physical leaflets, but digital interventions. We asked our whole community to use their social media- and their imagination – to get the message out!
We also asked patients to complete the inaugural Patient Care Survey, which was the largest survey ever undertaken in this area.
We were delighted to have the support of the Society of Endocrinology for this campaign.
We were joined by fantastic speakers, including the acclaimed Professor John Wass, Professor of Endocrinology at Oxford University; John Newell-Price, Professor of Endocrinology at the University of Sheffield, and Sofia Llahana, Consultant Nurse & previously a Chair of Nurses Committee for European Society of Endocrinology, along with many patients, volunteers and medical professionals.
Sessions ranged from Q&As with endocrine professionals, to sessionssupporting people to live well with their condition, to ways to get involved with The Foundation.
We reached over 100,000 people online, and sold 600 tickets to our events. We partnered with 6 organisations and are delighted that Online sessions were rated as Excellent or Good by 92% of the people who completed the feedback
As well as joining in with the events, patients and their support networks are invited to raise awareness of pituitary conditions and thesupport available to live well with a lifelong condition, by telling their story.
“I’d hit an all-time low and the Awareness Month has given me direction and hope again."
The Pituitary Foundation hopes that with patients across the country telling their story to friends, communities and medics, awareness of pituitary conditions will be raised. This will help to reduce the time it takes to be diagnosed and welcome patients who are unaware of the charities’ support to make use of our free services, helping them to live well with a long-term condition.
“Excellent session. Very positive. Wish this could have been shared with me upon diagnosis 8 years or so ago. If more information could be shared about medicines and when they don’t work - to help others know that they are not alone. Thank you for the session and to the doctors and event organiser for taking time out to raise awareness.”
Tell your story
We invited people to share their own stories of diagnosis and treatment. We developed some great resources for people to use to get involved which you can see here.