National Prion Clinic


Sources of help for families and health professionals

Additional information, support and advice can be obtained from a variety of voluntary organisations as well as statutory bodies. It is possible that there is little or no experience in service provision for people with prion disease in your local area. It will be important for national organisations with experience of this condition to be involved supporting families and professionals in order to facilitate services locally which meet each family's individual needs.
Statutory organisations

All those with suspected prion disease are referred simultaneously to the National Prion Clinic (NPC) and the National CJD Research & Surveillance Unit (NCJDRSU) order to ensure families receive a prompt service and access to information about treatments at the earliest opportunity. Staff from the NPC and researchers from the NCJDRSU will arrange to visit you and your family either at home or in hospital. They will liaise with the doctors involved in your or your relatives care, and if any form of prion disease is felt to be likely or is confirmed, a plan for further management will be agreed with you.

National Prion Clinic

The National Prion Clinic at the National Hospital for Neurology and Neurosurgery is the national referral centre for people with suspected or confirmed prion disease. Assessment, diagnosis, information, advice and support are available for patients, families, and health care professionals, and we are happy to discuss any issues with families or professionals over the telephone, without the prior need for a referral.
In our role as the tertiary referral centre for prion disease in the UK, the neurologists, nurses and neuro psychologist offer clinical support and liase closely with local care teams and the Care Co-ordinator who administrates the National Care Package.

National Prion Clinic
Box 98
National Hospital for Neurology and Neurosurgery
Queen Square

Tel: 020 7679 5142 / 020 7679 5036
Email: uclh.prion.help@nhs.net 

National Creutzfeldt-Jakob Disease Research & Surveillance Unit

The NCJDRSU is based in Edinburgh, and its role is to monitor all suspected cases of prion disease in order to develop an understanding of the factors potentially associated with the development of these diseases.

A Care Co-ordinator based at the CJD Resarch & Surveillance Unit in Edinburgh is also available to help facilitate the development of a care package that is flexible, can 'fast track services', and meets the individual needs of the family concerned. Department of Health funding to meet any shortfalls in provision due to a restriction in resources locally is administrated by the Care Co-ordinator. This funding is known as the National Care Package.

National Creutzfeldt-Jakob Disease Research & Surveillance Unit
Western General Hospital
Crewe Road
Edinburgh, EH4 2XU
Tel: 0131 537 1980/2128/3103
Website: www.cjd.ed.ac.uk

Growth Hormone related queries

A service specifically for recipients of human derived pituitary growth hormone has been established at the Institute of Child Health. Please contact:

Peter Adlard
Institute of Child Health
30 Guilford Street
London WC1N 1EH
Tel: 020 7404 0536
Email: peter.adlard@ucl.ac.uk

Voluntary organisations

CJD Support Network

The National CJD Support Network offers support, information and advice for people with any form of prion disease and their families. The CJD Support Network is the only UK charity providing emotional and practical support for all strains of CJD and for those who are at greater risk of CJD. www.cjdsupport.net/

The CJD Support Network
Associates House
118a East Barnett Road
New Barnett

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

The Cure CJD Campaign

The Cure CJD Campaign Raising funds to support the work of the MRC Prion Unit at UCL

Local services - Statutory organisations

The following services in your own area may contribute to your care package. All services can be accessed via your GP, and some will take referrals directly from families. It is imperative that a case conference is arranged as soon as possible so that the needs and wishes of the individual and family can be established, a key worker appointed, and appropriate practical help put in place as quickly and sensitively as possible.

Social Services
Social services appoint a Care Manager who will arrange a case conference and identify a keyworker. Specifically social services will be able to advise on financial benefits, day care, respite care and long-term care. Many services for people with progressive neurological problems have been set up with older people in mind, but there are more and more specialist services being developed around the country.

DHSC document

General Practitioner
Your GP should help to coordinate services and advise on ongoing medical problems. In many cases it is the GP who will have the responsibility to refer the individual to relevant services.

Occupational Therapist and Physiotherapist
Occupational therapists are involved in assessing for adaptations and aids to facilitate mobility and independence in daily living. A physiotherapist is able to advise and provide exercises to maintain mobility and prevent secondary disability arising from the condition.

Speech and Language Therapist
Speech and Language Therapists offer advice about communication and swallowing.

Community Psychiatric Nurses (CPN)
CPN's provide advice on behavioural problems. Behavioural problems arise for a number of reasons (for example side effects of medication, disease progression, communication difficulty, and perceptual impairment) and various health professionals can be of assistance.

Admiral Nurses
Admiral nurses are available in some areas of the country. Their role is to support carers of people with a dementia.

District/Macmillan Nurses
Provide help and support for daily nursing needs.

Continence Advisors
Equipment and advice regarding the management of incontinence, in addition to a laundry service are also available in the community.

Local services - Voluntary organisations

Citizens Advice Bureau (CAB)
The CAB will be able to offer help and advice regarding financial and legal issues, for example Enduring Power of Attorney, and any benefit entitlement.

Different branches of Crossroads provide different services, but all are aimed at providing practical help for carers.

Your local Alzheimer's Society branch
Many branches have services specifically for younger people with progressive cognitive impairment, and may have outreach workers. They may well be an important resource for networking in your local area.

Other useful links

Please see below for links to a number of organisations that may be of interest: