Support & contact information
The Neuroendocrine Nurse Specialist Team
The nurse specialist has expertise and experience in assisting with patients and carers concerns including:
- information about the disease illness, investigations, treatments and follow up
- advice about any symptoms;
- support for patients, relatives and carers;
- referral to the community nursing teams, such as the District Nurses;
- referral to other professionals who can offer specialist advice such as benefits, social services or complimentary therapies.
The advice line number is 0113 2068252. If this goes to answerphone, please leave a message and the Team will return your call. This may not be on the same day.
The NET Patient Foundation is the only charity in the UK dedicated to providing support and information to people affected by neuroendocrine cancers. They have an interactive online forum which allows people to engage with others affected by neuroendocrine tumours. The foundation produces excellent patient information and has its own Clinical Nurse Specialist Team as well as specialist counsellors who understand the unique challenges NET patients have to live with. They can also help with putting people in touch with local patient support groups (NET natter groups).
The Association for Multiple Endocrine Neoplasia Disorders (AMEND) is a patient group which was created to support and inform anyone affected by or interested in multiple endocrine neoplasia disorders and their associated endocrine tumours. AMEND is run by patients for patients and provides a wide range of information and publications.
Macmillan Cancer Support improves the lives of people affected by cancer. They provide practical, medical and financial support and push for better cancer care. They provide booklets on cancer and treatments and run helplines providing cancer information and benefits advice as well as an interactive online community forum.
Tel: 0808 808 0000
Maggie's have drop-in centres located around the country where they can offer practical, emotional and social support to people with cancer and their families and friends. They also have the Maggie's Online Centre, where people can communicate and share experiences with other people who have been affected by cancer.
Tel: 0300 123 1801
You can contact the centre at Leeds directly on 0113 457 8364
Marie Curie provide care and support for people living with any terminal illness, whilst also supporting carers and family members. Marie Curie also provide information on practical support which is available to view online or accessible through their helpline.
Tel: 0800 090 2309
Cancer Research UK provide information online to view and download. They also have an online forum for patients and carers as well as a national helpline.
Tel: 0808 800 4040