Prion disease in United Kingdom: help and pathways

The UK has more national infrastructure for these diseases than most countries, and families often do not know it exists.

The two national services

The National Prion Clinic in London takes referrals of people with suspected prion disease. The UK recommendations for CJD care published in 2026 advise referring to it, and advise offering genetic counselling before any PRNP test.

The national CJD surveillance and diagnostic service in Edinburgh handles surveillance and specialist diagnostic advice. Its annual report covering 1990 to 2023 describes collecting detailed clinical and epidemiological information on most patients, and notes that post-mortem examination rates in suspected cases have fallen in line with UK autopsy trends generally.

Your local neurologist makes the referral. The letter to neurologists and neuropathologists from the four UK Chief Medical Officers dated 29 August 2025 routes contact through service mailboxes rather than named individuals, so a local team that says it does not know who to contact can be pointed at that letter.

Support reaches the local team

This is the part worth knowing. The specialist services can advise the local hospital and community team without the family having to arrange it. If the people treating your relative have never seen a case before, that help is available to them.

The 2026 recommendations set out the team they expect: GP, district nurses, occupational therapy, physiotherapy, speech and language therapy, social work, geriatrics and old age psychiatry, palliative care, and the national prion services. They advise involving palliative care early.

If the illness runs in the family

The 2026 recommendations state that the National Prion Clinic can provide follow-on care for at-risk relatives in inherited prion disease, which few national services offer. Genetic counselling comes before any decision about testing, and not testing is a valid choice. Counselling first and the right not to know cover that ground.

Money and care funding

The 2026 recommendations state that extra funding may be available through the National CJD Care Fund and through care grants from the CJD Support Network.

Those care grants are up to 500 pounds for care-related expenses where CJD has caused financial hardship. Applications usually come through pre-approved referral partners, named as clinicians at the National Prion Clinic, the CJD National Nursing Service in Edinburgh and the National CJD Diagnostic Advisory Service. Anyone not going through a referral partner can email support@cjdsupport.co.uk. The charity states that repeat grants are not ordinarily given, because funds are limited.

Family support and bereavement

The CJD Support Network is the UK family organisation, and the 2026 recommendations point to it alongside the GP, the palliative care team and hospital bereavement services. They also name the general bereavement organisations Cruse Bereavement Support, WAY for people widowed young, and Way Up.

Infection control, funerals and precautions

If guidance is being applied in a way that keeps you apart from your relative, the 2026 recommendations state there is no evidence these diseases spread through ordinary social and clinical contact, and extra precautions apply only to particular tissues and procedures. The official guidance set published by the Department of Health and Social Care includes an annex on care after death and an information sheet written for funeral directors and relatives, which is the document to show a funeral director who is unsure.

People with prion disease, and people at increased risk, cannot give blood or donate organs.

Research and trials

What is open changes, and eligibility is set by each study. Trials outside the United States and how trials work explain how to ask.

Sources for this page