Counselling and Support

The rapid progression and unexpected nature of prion disease can be difficult for patients and families to come to terms with. At the National Prion Clinic (NPC) specialist nurses are available to provide information, signposting and ongoing emotional support. The nurses can arrange to visit you at home, an alternative convenient location, or can be contacted by telephone or by e-mail. There are four nurses at the NPC. We aim to make available around a day each per week specifically for information and emotional support. If it is felt that counselling is required, we have a neuro-psychologist within the team who can provide help, or we could help you to access counselling in your local area.

THE NATIONAL CJD SUPPORT NETWORK

The CJD Support Network isThe CJD Support Network was established in 1995 by relatives of people who have died with CJD and is now recognised as the leading charity for all forms of CJD. Its aims are to offer practical and emotional support to individuals and families concerned with all forms of CJD and financial support for families in need. The Network runs a 24-hour helpline and an annual Family Support Meeting.

Website: www.cjdsupport.net/

Helpline tel: 0800 774 7317
Email: support@cjdsupport.net

GENETIC COUNSELLING

If you are concerned about inherited prion disease, it may be beneficial to see a genetic counsellor who will work in a Clinical Genetics team at a local NHS hospital. Finding out whether you have a gene mutation which leads to prion disease is a complex and personal decision. Genetic counselling offers an opportunity for individuals who are at risk of inherited prion disease to find out about the possible implications of a positive or negative test result. Follow up support and advice may also be available from these teams

The British society of Human genetics provides information about genetic counselling for patients and families www.bsgm.org.uk/

The Association of Genetic Nurses and Counsellors Code of Ethics can be found at www.agnc.org.uk

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