SFEBES2022 Nurse Session Neuroendocrine tumours (3 abstracts)
AMEND, Tonbridge, United Kingdom
AMEND provides information resources and support services to families with MEN syndromes, offering free membership, educational and peer support events, and a free Counselling Service provided by rare disease specialist psychotherapy organisation, Rareminds. Our 2021 Counselling Service feedback data (n=24) showed that the biggest issue by far for patients is dealing with their diagnosis (39% of respondents). Managing symptoms and treatment are also significant issues. The service showed that 78% of counselling service users presented to the service with moderate to severe distress, however, on completion of their sessions, 78.5% were scoring in the low-distress or healthy range. The preliminary results from our 2022 Member Survey (n=38) show that while around 90% of members feel confident discussing their condition with their specialist doctor, almost 60% felt that their GP did not understand their condition. Almost 45% of respondents felt that their biggest challenge related to their condition had been getting diagnosed, and 40% felt that their condition had a negative impact on their emotional health. Regarding helpful AMEND resources, around 90% of survey respondents rate our website and free membership pack as good/excellent. AMEND uses a variety of ways to provide information and support to MEN patients, including videos, books, comics, cartoons, virtual peer support meetings, an annual patient information day, and much more.