Conversation Openers: Practical Tips for Healthcare Professionals
In collaboration with rareminds, Neuroendocrine Cancer UK presents Conversation Openers, an initiative born from our Open Conversations report on neuroendocrine cancer and mental health. Launched in 2022, the report underscored the critical need for healthcare professionals to engage in open dialogues with neuroendocrine cancer patients and their families regarding mental health concerns.
Recognising the unique psychosocial challenges faced by individuals with neuroendocrine cancer, Conversation Openers provides healthcare professionals with practical communication strategies to navigate discussions about mental health effectively. As part of our ongoing ‘Spotlight on Neuroendocrine Cancer’ campaign, these ‘bitesize’ videos offer insights into integrating mental health considerations into routine care and initiating sensitive conversations with patients.
I’m so tired of living with this, always feeling unwell, dreading injections and tests. I was beginning to feel I should just opt out. I couldn’t say that to anyone, but the nurse asked how I was managing ‘in myself’ and I told her. She really listened and took me seriously, she didn’t just fob me off.
Open Conversations
About the Campaign
On World Mental Health Day, Rareminds and Neuroendocrine Cancer UK joined forces to launch a campaign shedding light on the unique psychosocial challenges faced by neuroendocrine cancer patients and caregivers. The aim was to encourage open dialogue and increase awareness about the emotional impact of this rare disease.
Why It Matters
Neuroendocrine Cancer patients often grapple with emotional distress due to delayed diagnosis, misdiagnosis, and the unpredictable nature of their illness. Accessing mental health support can be challenging, compounded by low disease awareness and misconceptions about the condition.
Support for Healthcare Professionals
Report
Our ‘Open Conversations’ report identifies key themes to help healthcare professionals better understand and address the emotional needs of Neuroendocrine Cancer patients and caregivers. From managing the burden of a chronic illness to navigating uncertainties, the report offers valuable insights for providing holistic care.
Free Training
The NCUK Academy and Medics4Rare Diseases provide free, online training for nurses and doctors on diagnosing and supporting patients and families impacted by rare diseases for which they will receive CPD points and certification.
How You Can Help
By participating in our campaign, you’re contributing to a larger conversation about mental health in the neuroendocrine cancer community. Together, we can raise awareness, reduce stigma, and ensure that no one faces their diagnosis alone.
Support for Patients
Neuroendocrine Cancer UK
A diagnosis of Neuroendocrine Cancer can be isolating and overwhelming. Our organisation supports patients and their families through every step of their pathway, providing resources, guidance, and a sense of community.
Further Support
Being diagnosed with cancer can evoke a range of emotions, from anxiety and worry to relief or disbelief. There’s no right or wrong way to feel. If you’re struggling, consider reaching out to someone you trust, whether it’s a friend, family member, or healthcare professional.
The following organisations offer support whenever you’re ready:
- Neuroendocrine Cancer UK – Talk to us
- Association for Multiple Endocrine Disorders (AMEND) is a support organisation for those affected by rare genetic conditions that increase the risk of developing neuroendocrine cancer.
- Macmillan
- Carers UK
- Trekstock – for young adults with cancer
- Maggie’s – support free to anyone with cancer.
Other Mental Health Support:
- Anxiety UK
- Every Mind Matters
- The British Association for Counselling and Psychotherapy
- Relate
- rareminds
Emergency Support
- Samaritans
- CALM
- Papyrus
- Text SHOUT to 85258
The incidence, rise and presentation of Neuroendocrine Cancers
- Neuroendocrine Cancers account for less than 2% of all cancers reported, but over the last 2 decades, this incidence has risen exponentially – 371% compared to 116% increase seen across all cancers (White et al., 2021).
- The diverse distribution of neuroendocrine cells throughout the body means that neuroendocrine cancers can occur almost anywhere.
- They range from well-differentiated neuroendocrine tumours (NETs) to poorly differentiated carcinomas (NECs, small- and large-cell type) (Rindi et al., 2018). Grade 3 (G3) NECs can be highly aggressive, resulting in widespread metastases and poor prognosis (Berner et al., 2020).
- A non-functional neuroendocrine cancer is where the capability to release excess hormones remains unchanged; a functional neuroendocrine cancer is where this capability has become corrupted and excess hormone or bioactive substances are released.
- The majority of these cancers are non-functional; consequently the presentation may be incidental or related to mass effect or metastatic disease.
- Neuroendocrine cancer sits at the interface of rare/uncommon diseases, cancer, and chronic diseases, all of which present psychosocial challenges.
Mental health is everyone’s responsibility. It is crucial that the unique psychosocial and emotional challenges of living with neuroendocrine cancer are recognised and addressed as part of good practice and routine care, and that access to a broad range of psychosocial support according to patient need and preference is indicated.
The report focuses on providing a greater understanding of the psychosocial and emotional impact of living with Neuroendocrine Cancer and makes recommendations to all healthcare professionals who work with these patients to provide them with the best possible understanding and care to improve their daily lives.
This report is illustrated with anonymised quotes primarily from those who have used the NCUK Counselling and Psychotherapy Service, and from the NCUK MIND the Gap Survey (2018). We are extremely grateful to all NCUK patients and family members who have given their kind permission for their experiences to be shared in this report. This Report is dedicated to them
Symptoms
Tests
Newly diagnosed
Treatments
What is Neuroendocrine Cancer?
Living with Neuroendocrine Cancer
How we can support you
NC research and our campaign work
End of life care