National CJD NHS Nursing Service (UK, NHS Lothian site)

A UK wide specialist nursing service for people with Creutzfeldt-Jakob disease and their families, hosted by NHS Lothian in Edinburgh and funded through NHS England. It gives expert nursing advice, complex case management and symptom review from diagnosis to end of life, trains local teams, and manages the CJD National Care Fund, a ring-fenced NHS England stream that buys urgent equipment and care when usual NHS routes are too slow. Since the 2025 reorganisation of UK CJD services it sits beside the National Prion Clinic in London as one of two NHS commissioned nursing routes. This is information only, not clinical advice.

Key facts

  • The service is run by NHS Lothian, is funded by NHS England and covers the whole UK.
  • It describes itself as highly specialist, caring for people living with and dying from CJD and for their families across the course of illness.
  • Core offers are expert nursing advice, complex case management and symptomatic reviews.
  • Wider activities include rapid early contact with new cases, family support, coordination with local health and social care, home environment assessment, work with multidisciplinary teams on symptoms, and training for GPs, palliative, nursing and care teams.
  • Referrals and advice go by email, which the page calls the preferred route, or by phone.
  • The service manages the CJD National Care Fund, provided by NHS England as a specially commissioned stream.
  • The Care Fund pays for things such as mobility aids, safety equipment, home adaptations and bridging direct care, mainly when standard NHS routes involve long waits; standard routes are explored first.
  • Anyone with a confirmed CJD diagnosis is eligible; patients and families can self-refer through the nurses and professionals can submit an assessment.
  • Assessments cover current need, whether usual routes were tried, whether they cause delay, and the harm if the fund were refused. A virtual panel usually decides within 24 hours of assessment, and very costly packages go to NHS England for further approval.
  • The fund is not means tested, cannot be backdated to work begun before panel approval, and a person can make more than one application.
  • The fact sheet header shows the University of Edinburgh National CJD Research and Surveillance Unit alongside the NHS Lothian nursing service.
  • The UK Chief Medical Officers' letter of 29 August 2025 names nurses in NHS Lothian, and/or the National Prion Clinic's integrated services, as the NHS commissioned specialist nursing provision for suspected or confirmed prion disease. Access should follow a diagnostic process involving the Prion Clinic and the National CJD Diagnostic Advisory Service.
  • The Edinburgh CJD services page dated 27 May 2026 still lists specialist nursing support provided by the National Prion Clinic and a national NHS Lothian service.

Timeline

  1. 2025Care Fund fact sheet (version 02, review due June 2025) published on the NHS Lothian site; the PDF metadata date is 21 May 2025 and the document date itself is not stated.
  2. 2025UK CMOs letter sets 2025-2026 arrangements, naming NHS Lothian nurses as part of the commissioned nursing provision.
  3. 2026Edinburgh CJD services page, dated this day, still lists the NHS Lothian national nursing service.

Mentioned on these pages

Last checked 1 November 2026

Sources for this page