CJD: More Testing Is Needed In The U.K.

A Definition of Autopsy

The aim of an autopsy is to find out the cause of death and the health of an individual before they died. It can be used to make a medical judgement on whether better treatments or advice could have been given before death. It is about learning lessons from ill-health.

The Underlying Problem

The general concern is that in 2015, hospital autopsies accounted for about 1.2% of total autopsies. Such a low percentage raises concerns about the effect on quality assurance, public health and potential misdiagnosis.

Previous Action that was needed regarding CJD

In 1990, the Agriculture Minister could have called for post-mortem examinations, to test for CJD; see the video below this text. If he had done so, then British society could have had a greater understanding of this type of brain disease.

Variant Creutzfeldt-Jakob Disease: Why More Testing is Needed in the U.K.

Scientists have been concerned that there has not been enough testing for variant CJD. This is because coroners appear to have refused to check for an infection. A forensic pathologist and neurologist could test the brains of people, during an autopsy, to see if there are prions (infectious agents) in the body. The public needs to know how many people have prions in their body without knowing it. Coroners need to establish the exact cause of death and extra funding is needed so that they can do that job.

Greater testing is needed to establish how many people are incubating CJD and could suffer from the disease in the future. Also further examinations would help find out whether the current surgical measures are sufficient to prevent the spread of the disease.

The Possible Under-Estimation of Classical or Sporadic CJD in the UK

Edinburgh University provides the number of cases of CJD in the United Kingdom. These are the official figures with 125 deaths in 2018. However, post-mortems are expensive to undertake and so it will be costly to give a diagnosis of CJD for someone who has a general diagnosis of dementia. An elderly patient is likely to be given a general diagnosis of dementia. A death of an elderly person, particularly someone in their nineties, is unlikely to be judged as unnatural. Therefore it is implausible that a coroner would be needed. The coroners would see an old person's death as unlikely to merit a detailed examination given their old age; and the possible presence of vascular dementia in the elderly. Therefore, they would be unlikely to pay for a detailed neurological autopsy.

It is possible, therefore, that there are many cases of 'hidden CJD' which have not been identified among elderly dementia patients. The number of cases of sporadic CJD is likely to be under-estimated given that it tends to occur in older members of the population. Consequently, the Edinburgh figures should be seen as a 'best estimate' and an under-estimate of the actual likelihood of CJD in the United Kingdom population.

There is a BBC article which advocates cutting the number of post mortem examinations. However, this should only be done if the government can be confident that cases of CJD in the elderly are not being missed. To make sure that prion disease is properly observed then post-mortems are necessary and vital. Autopsies have to be undertaken by skilled pathologists and the NHS needs to make sure that there are enough skilled doctors. Society needs enough specialists to find all the cases of CJD that may have occurred in the population.

Financial Concerns in the Reporting of CJD in the Elderly

The average cost of a post-mortem examination was about £1,000 in 2013. It will be more expensive to pay for a coroner for cases requiring additional skills. The costs of a post mortem can be much higher depending on further tests. Since the financial crisis of 2008, there have been reductions in public spending. It is possible that this has led to an increasing reluctance to pay for more thorough post mortems. With cuts to local government funding then it is likely that coroner's services will be reduced too.

The brain would need to be examined thoroughly in a case of dementia and such an investigation could take many weeks. This will add to the costs of the study. Therefore, there could be a bias not to undertake a detailed post-mortem and label the death as a ‘generic dementia’.


The government needs to spend more money on post-mortems to properly identify the incidence of CJD in the population. An examination is needed of the possible cases of Sporadic CJD in the elderly. The country needs to make sure that CJD is not accidentally overlooked due to misdiagnosis and a generic label of ‘dementia’ being applied. This is the case given the possible similarities between CJD and other more common forms of dementia.


If general practitioner's (GP's) are being offered financial incentives to reduce the number of referrals to hospitals; then the level of referrals is likely to fall. In this case, hospitals will make fewer observations of sporadic CJD which again suggests that the official statistics are an under-estimate of the 'real' figure.

To find out the full extent of CJD, in the population, then tests for CJD would be needed on all the roughly 500,000 people who die every year in the UK. Given that this information is not available then it is difficult to fully measure the extent of the disease in this country.

Video: Variant CJD: More Testing is Needed in the United Kingdom

CJD and Blood Exports

A Video on the Export of Blood Which May Have Been Contaminated

A PowerPoint on blood exports from Britain and variant CJD. There is now concern that variant CJD can be passed through blood; see a BBC news report (from November 2009) on blood donation.


The sources for this presentation are from The Guardian; (1) CJD link to blood Britain sold abroad; (2); 2. British blood products may pose vCJD risk in 14 countries and (3) Blood filter to protect patients from vCJD but only for the young.


Albumin is any of a group of water-soluble proteins found in blood, milk or egg. A vial is a small bottle, usually of glass, for containing liquids. A prion is any of a group of tiny infectious agents composed mainly or entirely of protein: though lacking in demonstrable nucleic acid, prions are capable of self-replication and are thought to be the cause of various degenerative diseases of the nervous systems of vertebrates, as scrapie and kuru.

Further Information

There is a blood safety channel on You Tube and a long article from the Guardian from 2018 on Britain's contaminated blood scandal.