Close
Sources of help for families and health professionals
- 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.
- 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.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.Crossroads
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:
- Alzheimers society
- CJD Support Network
- ClinicalTrials.gov
- Contact a Family - For families with disabled children
- Counselling Directory
- Current Controlled Trials
- Genetic Alliance UK
- James Lind Alliance
- MRC Prion Unit
- MRC Clinical Trials Unit (CTU)
- The National Creutzfeldt-Jakob Disease Surveillance Unit (NCJDRSU)