care

NATIONAL CJD RESEARCH & SURVEILLANCE UNIT

NATIONAL CJD CARE TEAM

The National CJD Care Team is based within the National CJD Research & Surveillance Unit (NCJDRSU) and was formed in response to concerns regarding the care of CJD patients. The team consists of:-

National Care Co-Ordinators:

Margaret Leitch

Blaire Smith-Bathgate

NATIONAL CARE CO-ORDINATORS

The co-ordinator will work alongside the patient, their carer, the professionals and other organisations involved in the patient's care and will be available to provide advice, information and support. Information will also be given about charitable organisations dedicated to helping people affected by CJD. The co-ordinator will be available on an ongoing basis by telephone and can travel to any destination in the UK to provide assistance.

NEUROLOGIST

A neurologist works as part of the National Care Team and is available by telephone to provide advice regarding medical aspects of CJD management as well as care co-ordination issues.

LIAISON

The co-ordinator and neurologist also liaise closely with the Department of Health and will monitor the response of the authorities providing care in order to identify areas for improvement.

Since October 2000, a care package has been set up for people with CJD to help ensure that all shortfalls in car provision are met.

Following a referral to the NCJDRSU, and with permission of the patient or their family, contact will be arranged with one of the National Care Co-ordinators. They work with the patient and family to identify their specific care needs, and to facilitate processes to meet these needs.

The co-ordinator will travel to any destination within the UK to provide this assistance, are available to attend case conferences and are available by telephone Monday to Friday, 9am - 5pm. Contact with families is undertaken as frequently as required.

Case records will be kept by the co-ordinator and regularly updated to document the progression of the disease and to record case conferences and any interventions or treatment that are undertaken. These care records remain confidential and are securely maintained within the NCJDRSU.

Liaison with other professionals and organisations which may benefit the patient, and their carers will only take place with permission.

AIMS OF THE ROLE

to provide advice on the care and treatment of CJD, as well as emotional and practical support to those whose lives have been affected by CJD.
to be available to meet an affected patient and their family on a regular basis and to be available for advice in emergency situations.
to attend regular case conferences and to offer advice on the Care Package required by individual CJD patients.
to liaise with local professionals to identify deficiencies in care, and to liaise with the Department of Health regarding the use of care fund monies to overcome these deficiencies.
to co-ordinate the function of the CJD Advice Network (a group of people from a wide variety of health backgrounds with experience in differing aspects of CJD management) who are available to act as resource people.
to undertake a systematic audit of the undertakings of the Care Unit and of the uses made of care package money.
to meet regularly with the Department of Health, in order to provide feedback regarding activities of the Care Team.
to act as a resource for all interested parties with interest in CJD and its care. To disseminate knowledge about CJD to all interested parties.
to liaise with other organisations involved in research in CJD and in the care of persons with CJD.

HOW TO CONTACT US:

National CJD Care Team

National CJD Research & Surveillance Unit

University of Edinburgh, Bryan Matthews Building

Western General Hospital

Crewe Road

Edinburgh EH4 2XU

Telephone: +44 (0)131 537 3073

Fax: +44 (0)131 343 1404

OTHER USEFUL WEBSITES:

Department of Health CJD Policy Unit – Guidance Documents

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