How we can support you
At Neuroendocrine Cancer UK we’re here to help from diagnosis, through treatment and beyond.
If you, or someone close to you, has been diagnosed with Neuroendocrine Cancer, you might be finding it’s harder than ever to get the vital support you need right now. Being diagnosed with a rare or uncommon cancer can have additional consequences, not least in terms of awareness, early diagnosis and access to expertise. Feelings of isolation, fear, uncertainty and anxiety are not uncommon. But during this time of increased uncertainty and isolation, we’re here for you, whatever your question.
There are a range of ways we can help you from clear, easy to understand information to emotional support when you need to talk.
In this section you will find information about the following services:
Support from those who have been affected
Talk to us
We’re here for you
Speak confidentially with our support services team for information and support.
Helpline and Advice.
Contact us through our helpline, which is free and confidential – 0800 434 6476
10:00am – 4:00pm
Our dedicated Neuroendocrine Cancer helpline provides general Neuroendocrine Cancer information and peer support. Sometimes we know it can be hard to talk, so if you’d prefer to email our nurse direct. please complete our Ask the Nurse form to request a call-back or receive an email reply.
For fundraising and donation enquiries, please contact the main office – should you not be able to find the information you need on the website.
Please note – The Helpline is not a general enquiry or emergency line. If you require urgent medical assistance please contact emergency services and notify your specialist team.
Our helpline team
Patient Ambassador & Cancer Support Co-ordinator
Patient Engagement, Education & Policy Lead. NMC registered nurse
Neuroendocrine Cancer Support Nurse
Natter Support Groups
Our ‘Natter’ Support Groups are community based local, regional and/or national online meetings that offer an opportunity to meet others also affected by Neuroendocrine Cancer; you, your family, friends and supporters, to share experiences, make friends and create a supportive network.
“This group is so friendly and so genuinely caring that people are prepared to talk openly about things they may not have said to anyone else… and I just think that’s a wonderful atmosphere that’s produced here in the group.”
We offer a free, confidential service for patients and supporters, family members or friends. Our counsellors have a specialised understanding of the complex issues that can arise in being diagnosed, and living with, Neuroendocrine Cancer over time.
If you are thinking of ending your own life, or worried that someone else might be, please let someone know. This could be a friend or family member, your GP, hospital nurse or doctor, or your local A&E.
The Samaritans provide an excellent listening service for anyone in crisis, suicidal, or feeling very alone: Call 116 123.
Or text SHOUT to 85258 – SHOUT is a 24/7 UK crisis text service available for times when people feel they need immediate support.
Patient Information and Resources
We make sure our information is accurate and up-to-date by using the latest evidence from research and clinical guidelines. However, our information does not replace the advice of your healthcare team. All of our information is regularly updated. We try to make our information as clear as possible by writing in plain language and explaining medical words.
We use our medical advisory board to check our information for medical accuracy, and patients and supporters to check that our information makes sense and answers all their questions.
Download our leaflets, guides and factsheets, or order our emergency wallet cards and newly diagnosed patient packs, free of charge.
Our Online Community
The Online Community understands what it’s like to have Neuroendocrine Cancer.
Our Facebook groups are private groups and have been established to provide a safe place for those affected by Neuroendocrine Cancer to chat, talk and help each other by sharing experiences and knowledge, to both give and receive advice, support and friendship.
Neuroendocrine Cancer UK run a programme of events which aim to support and educate patients and their supporters about all aspects of Neuroendocrine Cancer.
Our free to attend, interactive events cover aspects of cancer diagnosis, treatments, research and care. Events are delivered by a multidisciplinary team of experts through interactive workshops, panel discussions and clinical lectures. As an attendee you will have the opportunity to network with others in a similar situation to you and meet the presenters.
Neuroendocrine Cancer Mobile App
‘My NETs’ is a new disease-specific App that can be utilised by anyone affected by Neuroendocrine Cancer.
It can be used for day to day information gathering such as symptom tracking, managing and storing health details, (such as blood and other test results, diet and medications, appointments, etc.) and has a functionality that enables users to send data directly to their care team, through a dedicated HCP portal.
Stories and Experiences
Real life experiences, practical advice and everything in between. Whether you are diagnosed with Neuroendocrine Cancer or another rare or less common cancer, our podcast series cover topics from initial diagnosis, treatments and follow up, looking after your mental health and the professional perspectives from those involved in your care. Hosted by Catherine Bouvier and produced by Neuroendocrine Cancer UK. We hope this series answers some of your questions or provides a source of support – or both, after all, this NeuroEndocrine Caner is not just NE cancer.