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 looking forward to this year's NPUK Annual Family Conference & Interactive Workshop on Niemann-Pick Diseases, which will mark a special milestone - the 25th time we are all coming together as a community!Read more
We are happy to announce that the latest edition of NPUK News is here...and, as ever, is full to the brim of information and updates for the NPUK community including; the 'Research Report' by NPUK Trustee Bill Owen, updates from our wonderful Care and Support team (Laura Bell, Elizabeth Davenport, and Steve Neal), a collection of stories from our fantastic fundraisers, news on our upcoming Annual Family Conference & Interactive Workshop, updates from the INPDA International Niemann-Pick Disease Alliance, INPDR International Niemann-Pick Disease Registry, The Hollie Foundation and...well...so much more!Read more