UK Specialist Centres

Specialist care centres can provide comprehensive, integrated, multidisciplinary care for patients, as well as information and support for family members. They aim to incorporate networks of all relevant medical disciplines within the core team.  They have effective links with national networks of testing laboratories and other care centres at a national and international level.

Specialist nurses play a vital role in the day-to-day running of clinics and deal with many of the familial aspects of work with patients and family members. Physical therapists, speech therapists, occupational therapists and disease counsellors should also all be involved in supportive care for patients.

Everyone affected by Niemann-Pick disease(s) in England is entitled to receive their clinical care at a Specialist Centre: 

Adult Niemann-Pick Disease Patient Centres:

• University College London Hospitals NHS Foundation Trust
• Royal Free Hampstead NHS Trust
• Cambridge University Hospitals NHS Foundation Trust
• Salford Royal NHS Foundation Trust
• University Hospitals Birmingham NHS Foundation Trust

Paediatric Niemann-Pick Disease Patient Centres:

• Great Ormond Street Hospital for Children NHS Trust
• Central Manchester University Hospitals NHS Foundation Trust
• Birmingham Children’s Hospital NHS Foundation Trust

Scotland, Wales and Northern Ireland:

Arrangements are in place for patients from Scotland, Wales and Northern Ireland to be seen within the designated centres in England for diagnosis and clinical management.  Decisions on funding treatment/access remain with the patient’s local health authority:

• Scotland: Local Health Boards
• Wales: Health Commission Wales
• Northern Ireland: Northern Ireland Health and Social Security Boards 

For further information visit the NHS Specialised Service Website.