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 in England is entitled to receive their clinical care at a Specialist Centre:
Adult Niemann-Pick Disease Patient Centres:
Paediatric Niemann-Pick Disease Patient Centres:
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:
For further information visit the NHS Specialised Service Website.
We are happy to announce that the latest issue of NPUK News (Autumn 2018) is now available. This time around it is a bumper edition featuring everything from the Annual Family Conference to BBC Children in Need, with guest articles from Shona Beveridge, Jenny Charman, and Dave Smith...and so much more!Read more
The following letter from Mallinckrodt's Sheila Talafous, Director, Advocacy Relations and Derek Naten, Senior Director, Government Relations & Advocacy refers to the VTS-270 Phase 2b.3, as well as expanded access and compassionate use programs.Read more