Some people referred to these teams will turn out not to have prion disease. Whatever diagnosis is confirmed, your/the patient's care will be lead by your local clinical service. Involvement in any research is entirely voluntary and refusal to participate will not affect your care in any way.
Western General Hospital, Edinburgh
Tel: 0131 537 2128
The National CJD Research & Surveillance Unit (NCJDRSU) is funded by the Department of Health to identify, classify and investigate prion diseases in the United Kingdom. The NCDJSU team will want to visit to make sure that it is a prion disease and also to identify what type of prion disease may be affecting you/the patient. They will also wish to discuss other research projects. The team consists of a doctor and a nurse who will travel to see you/the patient and to discuss things with the local clinicians. They can provide advice, guidance and diagnostic tests to help the doctor looking after you/the patient both in making the diagnosis and in giving care. A National Care Team is based at the NCJDRSU. If you and the local clinicians wish, a care co-ordinator from the National Care Team will visit later to assess your/the patient's care needs and to help you and the local doctors to identify ways to meet these needs if they are not already met.
The National Prion Clinic and MRC Prion Unit treatment (clinical trial) team
National Hospital for Neurology and Neurosurgery, London
Tel: 0203 448 4037
http://www.nationalprionclinic.org
The National Prion Clinic (NPC) offers specialist in- and out-patient services including diagnostic facilities which are available to help support your doctors, if they wish, in choosing the best type of care for you as well as providing specialised advice and counselling.
A major, long-term, research effort is underway at the MRC Prion Unit in London to find new treatments for prion disease and to study if these treatments benefit patients (the MRC Prion-1 trial). We need to understand better how these rare diseases progress in everyone, not just those taking a new drug(s), in order to make real progress towards an effective treatment. Therefore, the Prion-1 trial has been designed to allow all patients that want to participate to do so, irrespective of whether or not they want to try the drug being tested at that time, or what form of prion disease they might have. The Department of Health has made a major financial investment in the trial and asked the Medical Research Council, which has over 50 years experience running trials, to find the best treatments for these diseases. The team would like to visit you to discuss the treatment trial and other research projects aimed at tackling these diseases.
Many patients and carers find it helpful to talk to others with experience of the same diseases. There are two UK support groups for patients with prion disease and their families and carers. Both have confidential helplines, offering support and practical information. They each have a website, and regular newsletters, with lots of useful information.
Because these diseases are very rare, many local medical and care services have no experience of them. But you are not alone. The support groups, together with the specialist centres, are committed to making sure you don't miss out on whatever help is available. You don't have to wait until you have a firm diagnosis - support is there, if you want it, from the moment you have to consider the possibility of prion disease.
The CJD Support Network is a UK charity for people with any type of CJD.
Helpline: 01630 673973
http://www.cjdsupport.net/index.html
The Human BSE Foundation is a UK charity primarily for those who have (or may have) contracted variant CJD.
Helpline: 0191 389 4157