Understanding the Impact of Nerve Tumours UK: Insights from Our Latest Survey

At Nerve Tumours UK, we are dedicated to improving the lives of those affected by NF. To ensure our work is as effective as possible, we recently conducted two online surveys to hear directly from the NF community about how our services are helping and where we can do more. The results highlight both our successes and areas we can improve—and we’re excited to share these insights with you.

How the Survey Was Conducted

Between September and October 2024, we partnered with Charity Fundraising Ltd to run two surveys: one for individuals living with NF and another for parents, carers, and family members. The surveys were promoted through our newsletter and social media channels, and participation was incentivized with a prize draw.

Key Findings

1. Engagement: The participation rates indicate a strong engagement with both groups, particularly from individuals who have used our services.

2. Service Usage: A significant proportion of respondents have accessed our services, highlighting the relevance of our offerings to the community.

What We’re Doing Well

The survey shows that our services are making a real difference:

• 96% of parents and carers reported feeling more knowledgeable about NF after using our services.

•  81% of individuals with NF said they now better understand their condition.

• 78% of parents and carers feel less isolated.

•  68% of individuals with NF feel supported by a community facing similar challenges.

• Many respondents shared how our Specialist Nurse Advisors, Helpline, and Facebook community groups have been lifelines, providing practical advice and emotional support.

“The specialist nurse service has been a great advocate for me. They’ve helped me get the right healthcare and broken down barriers to treatment,” shared one participant.

Another added: “Nerve Tumours UK gave me the confidence to embrace who I am and push for NF to be more recognized.”

Areas for Growth

The survey also revealed opportunities for us to improve:

• 41% of individuals with NF and 30% of parents and carers were unaware of our services. Increasing awareness is a clear priority.
• 78.5% of respondents want us to focus more on raising awareness of NF amongst medical professionals. Many feel that NF is misunderstood within healthcare settings, making it harder to get the support they need.
•  Mental health support emerged as another key area, with calls for specific counselling services and help navigating the challenges of living with NF.

Looking Ahead

These findings are guiding the next steps for Nerve Tumours UK. We plan to:

1. Raise awareness of NF among healthcare professionals to ensure better
understanding and support.

2. Expand outreach so more people—especially adults—are aware of our
services.

3. Improve access to Specialist Nurses, who remain a vital source of
guidance and advocacy.

We are also exploring ways to create more opportunities for community connection.

Your Voice Matters

Thank you to everyone who participated in the survey. Your feedback is vital in shaping the future of Nerve Tumours UK. Together, we can continue to build a supportive, informed, and empowered NF community. If you have any further ideas or suggestions, we’d love to hear from you—because every voice helps us make a difference.

For more information about our services and any support you might need email directly info@nervetumours.org.uk or call our helpline Mo, Wed, Fri 9am to 5pm 07939 046 030