Creutzfeldt-Jakob disease and other human prion diseases are invariably fatal, and there is currently no proven treatment that has been shown conclusively to slow, halt or reverse the disease process in humans with any form of human prion disease.

Established by the Department of Health, the National CJD Care Team is based within the NCJDRSU and was formed in order to optimise the care of patients suffering from all forms of CJD. The present team consists of two care coordinators who are senior nurses, with secretarial and clinical neurological support from within the Unit.

When a patient is referred to the NCJDRSU, once a diagnosis of probable or possible CJD is made, if the co-ordinator has not already met the family, the coordinator makes direct contact with the family and offers the opportunity to meet and to assist with care planning. Once contact is made, the coordinator can meet with the patient, family, and the professionals involved in care, on a regular basis, depending on need. The coordinators provide valuable expertise in nursing patients with CJD and can anticipate and prevent some problems that may arise by offering skilled advice and education.

CONTACT DETAILS:

Terry Awe - terri.awe@nhslothian.scot.nhs.uk

Juli Jose -   juli.jose@nhslothian.scot.nhs.uk

In line with Information Governance and GDPR please keep patient identifiable information to a minimum when sending emails.

CJD AND THE CORONAVIRUS

The advice that we have received regarding COVID-19 and CJD is the same as that being shared and regularly updated by the NHS and the Government.

WE WOULD ADVISE YOU ASK ANY VISITORS COMING INTO YOUR HOME TO WASH THEIR HANDS AT POINT OF ENTRY AND ON LEAVING.

Wash your hands often with soap and water for at least 20 seconds or use an alcohol-based hand sanitiser.

Use an alcohol-based hand sanitiser that contains at least 60% alcohol if soap and water are not available.

Cover your cough or sneeze with a tissue, then throw the tissue in the bin. If you don’t have a tissue, use your sleeve.

Avoid touching your eyes, nose and mouth with unwashed hands.

The situation around COVID-19 and the risks it poses is changing rapidly. We advise visiting the following NHS websites for current information and guidance.

• England – follow advice from NHS and UK Government
• Wales – follow advice from Public Health Wales
• Northern Ireland – follow advice from Public Health Agency
• Scotland – follow advice from NHS Inform and Scottish Government

Further advice and guidance:-

• DementiaUK