A diagnosis of neuroendocrine cancer affects far more than the individual receiving treatment. It also has a significant impact on the family members, friends and caregivers who provide emotional support, practical help, advocacy and care throughout the cancer journey.
At Neuroendocrine Cancer UK, we know that those supporting a loved one often face their own challenges. Many take on substantial emotional, practical and sometimes physical responsibilities while balancing employment, finances, family life and their own health and wellbeing. These experiences may begin long before a diagnosis is confirmed and continue through treatment, recovery, recurrence, advanced disease or bereavement.
To help us better understand these experiences, we are inviting family members, friends and caregivers who have supported someone living with neuroendocrine cancer to take part in our new survey.
Why are we conducting this survey?
Family members, friends and caregivers play a vital role in supporting people affected by neuroendocrine cancer. However, their own needs, experiences and challenges are not always fully recognised or understood.
The survey has been designed to help us identify what more can be done to support those who provide care and support, and to inform future awareness, education, services, advocacy, research and policy.
The survey aims to understand:
- Experiences of supporting someone living with neuroendocrine cancer
- The emotional, practical, social, financial and physical impact on family members, friends and caregivers
- Whether support needs were recognised and addressed by healthcare services and other organisations
- What information, resources and support would have been most helpful at different stages of the cancer journey
- What healthcare providers and support services could do differently to better support caregivers
- Any unmet needs, barriers or challenges experienced while providing support
All responses are anonymous and will help shape future work to improve support for families, friends and caregivers affected by neuroendocrine cancer.
Who can take part?
This survey is open to anyone who has provided support to a person living with neuroendocrine cancer.
Support can take many forms, including:
- Providing emotional support, encouragement and someone to talk to
- Helping with practical tasks such as shopping, transport, childcare or household responsibilities
- Attending appointments, helping to understand information or supporting decision-making
- Assisting with administrative or financial matters
- Providing personal care, including help with medications, mobility or daily living activities
You do not need to have provided hands-on physical care to consider yourself a caregiver.
Whether you are a spouse, partner, parent, child, sibling, relative, friend or someone who has supported a person living with neuroendocrine cancer in any capacity, your experience is important. Support may have been occasional or intensive, short-term or ongoing, but every perspective will help us better understand the realities faced by those caring for and supporting loved ones.
Help us improve support for future caregivers
By sharing your experience, you can help Neuroendocrine Cancer UK identify gaps in support, improve resources and services, and ensure that the voices of families, friends and caregivers are heard.
If you have supported someone living with neuroendocrine cancer, we encourage you to complete the survey and help shape a better future for those affected by the disease.
Take part in the survey here:
https://www.smartsurvey.co.uk/s/NCUKRWDFamily/
THANK YOU