Somerset County Council

Creutzfeldt-Jakob Disease (CJD)


We provide services free of charge for people diagnosed with Creutzfeldt-Jakob Disease (CJD).

CJD was first identifed in the 1920s. It is a rare disease found in all parts of the world. The average age of sufferers is 65 years. Variant Creutzfeldt-Jakob Disease (vCJD) is a form of CJD that was identified in 1995. This disease affects people under the age of 50 years.

Many of the early signs of vCJD are like those that occur in other neurological and psychiatric illnesses. These can include :

  • Mood swings 
  • Sleep problems 
  • Lack of interest in life 
  • Neglect of personal hygiene 

It may not be clear that the person has a serious disease of the nervous system for several months. You can find out more about the symptoms of vCJD on the NHS Direct website.

If you are concerned about yourself or someone you know, talk to your doctor. You can find out how we provide care and support by phoning us on 0300 123 2224.

It is important that everyone involved with the care of a person with vCJD works together and responds quickly to meet their needs and support their carers.

The professionals involved may include:

  • Social Workers 
  • Doctors 
  • Nurses 
  • Physiotherapists 
  • Occupational Therapists 

The type of help most often asked for is:

  • Social work and counselling 
  • Daily help and personal care 
  • Sitting service 
  • Respite care 
  • Financial advice 
  • Nursing care 
  • Continence aids 
  • Aids to daily living 
  • Adaptations to the home 

We will respond to anyone who contacts us about vCJD within two days.

One worker will be assigned to work with you. They will take responsibility for assessing and developing a care plan. They will co-ordinate services, information sharing and will contact the national CJD Surveillance Unit for advice.

If you care for someone with vCJD you can also ask to be assessed and services can be provided to support you in your caring role.

No charge will be made for any services provided to meet the needs arising from a diagnosis of CJD or vCJD.

The government has established a national fund to support the timely provision of care for people suffering from all forms of CJD. This money is not intended for routine care. The fund is administered by the CJD Surveillance Unit.


Contact: Customer Contact
Use the 'Contact Adult Social Care' form if you have a quick question for the team 
For a more detailed conversation please phone 0300 123 2224
Opening Hours: Monday 8am to 6pm, Tuesday to Friday 8.30am to 5.30pm, Saturday and Sunday closed.

» Indicates required fields

Feedback form
Was this information helpful? »