Cushing’s Awareness Month and 2019 Surveys

This October, The Pituitary Foundation’s Awareness Month campaign was improving GP and publicawareness about Cushing’s. We hear regularly from Cushing’s patients, who have experienced a frustrating and lengthy diagnosis. GPs can commonly mistake these symptoms, so the key campaign message to primary care (GPs etc.) is that Cushing’s symptoms can be a great mimic for other more common conditions that are regularly seen by GPs, such as obesity, menopause, depression, and hypertension.

The more GPs we make aware, the more patients can be diagnosed early and avoid the frustrations, and poor wellbeing, associated with a long diagnosis. The Foundation contacted the Royal College of General Practitioners (RCGP), GPonline and as usual worked beside the Society for Endocrinology to help raise this awareness. 

We also encouraged volunteers, support groups, fundraisers, members, patients and families to get involved. The campaign was launched on 14 September, and there was a huge response on Facebook with over 6,000 people reached, and 73 shares on our first Awareness Month announcement.

The methods we used to recruit supporters to get involved included:

  • Posters for GP surgeries
  • Developing web pages on our website to publicise and fully explain the campaign and the suggested activities.
  • Articles in the summer and autumn editions of Pituitary Life magazine.
  • Regularly posting across our social media platforms.
  • Articles within Volunteer News, as well as regular e-bulletins (membership, volunteer and endocrine).
  • Contacting participants who had been involved in previous Awareness Months.

Social Media

We were delighted that our specific Cushing’s Awareness posts reached a total of 81,857 with 582 shares. One particular post of a patient’s video received 1.2k views alone.

We had positive feedback from many patients, including from our Cushing’s Facebook group who have been diagnosed. They were very passionate about wanting to help us raise awareness and kindly offered us their stories and photographs. They felt that the awareness campaign has had a significant impact on GPs. They’ve seen a dramatic rise in new members during the month; possibly increased by nearly 100 members, bringing their current total up to 905 members.  There are always plenty of posts with members asking for advice on various issues, including how to get their GP to take them seriously, to finding out how to get to a Centre of Excellence.

We welcomed donations from those who ran activities, and those who weren’t able to get involved in running an activity but who still wanted to support the campaign. In total, Awareness Month 2019 has so far raised £4000.00 which was higher than last year’s campaign

Thank you very much to everyone who took part and helped raised this much needed awareness.

Cushing’s survey

During the Awareness Month, we produced an online survey for those diagnosed with Cushing’s. The aim was to assist the Clinical Reference Group (CRG) Specialised Endocrinology, to collect anonymised data to support their ‘Cushing’s Pathway of Care. You can download a brief overview of the survey results here.