Safety in care settings: more detail

Which document covers which question?

In the UK the guidance is a set rather than a single document, published by the Department of Health and Social Care and prepared by the Advisory Committee on Dangerous Pathogens’ subgroup on transmissible spongiform encephalopathy, known as the ACDP TSE subgroup. The set was first published in November 2012 and parts of it have been revised since, most recently the laboratory containment part in November 2021.

The parts a care question is most likely to need are these. Infection control of CJD, variant CJD and other human prion diseases covers healthcare and community settings. Annex A1 sets out how infectivity is distributed across human tissues and body fluids, which is the document behind any statement that a particular sample or procedure is low risk. Annex C covers decontamination and waste disposal. Annex E covers quarantining of surgical instruments, and Annex I the handling of instruments and tissue from brain biopsies in progressive neurological disorders. Annex J covers assessment before surgery or endoscopy to identify patients with or at risk of CJD, and includes explanatory diagrams added in 2017. Annex H covers management after death, and a separate one-page information sheet is written for funeral directors and relatives.

Other annexes cover endoscopy, pathology laboratories, ophthalmology, and general surgery and liver transplantation. There is also a short alert to urological surgeons about equipment for transrectal prostate biopsy in patients at risk of variant CJD, which is the kind of specific item that is easy to miss when a team reads only the main infection control document.

Naming the annex is important in practice. A dispute about whether a care home can accept someone, or whether a dentist can treat them, is usually a dispute about which risk category a procedure falls into, and Annex A1 and the infection control document answer that directly.

How does this differ outside the UK?

The structure differs more than the substance. The CDC directs clinicians to the World Health Organization infection control guidelines from 1999, lists brain, spinal cord and eyes as high infectivity tissues and cerebrospinal fluid, kidneys, liver, lungs, lymph nodes, spleen and placenta as low infectivity, and gives decontamination options for heat-resistant instruments combining sodium hydroxide or sodium hypochlorite with autoclaving. It states that the safest course for heat-resistant instruments that have touched high infectivity tissue is destruction, while acknowledging that this may be impractical or costly.

Two CDC details are worth carrying into a local policy discussion. Instruments used in neurosurgery on a patient whose CJD status is not yet known should be reprocessed as though CJD were suspected or confirmed. And instruments should be kept moist during a procedure rather than allowed to air dry, because drying makes later decontamination harder.

The CDC page does not address isolation or home care, so a question about those in a country that follows CDC guidance has to be answered from the WHO document or from national guidance.

Who gives an answer a care home will accept?

A national service, in writing, through the clinical team. This has been the pattern for a long time and is not new: in a 2001 reply to the Austrian parliament, the responsible ministry described the national reference centre as checking suspected cases on referral, having circulated autopsy and brain removal safety guidance to pathology institutes, and being available to answer questions from care staff and pathologists.

The practical route is therefore: the treating team or the GP contacts the national surveillance or specialist prion service, the service gives advice on the specific question, and the hospital infection control team puts the local policy in writing. Families do not have to assemble the evidence themselves, and a request for a written answer is a reasonable thing to ask a clinical team for.

What the guidance does not resolve

Refusals of admission are not addressed in the guidance text. The documents set out what precautions are required, not what to do when a provider declines a placement on the strength of a diagnosis. That gap is why the written answer above is worth obtaining early rather than during a crisis.

Nothing here is advice about a particular person’s care. Care settings is the plain-language version, and decontamination covers the laboratory evidence behind instrument processing.