The BPA are delighted to report that NHS Scotland has finalised arrangements to commission support for Scottish acute porphyria patients and their doctors from the English NAPS service. The new arrangements came into operation as of 1 April 2016.
A formal agreement has been made to enable shared care between NAPS doctors (mainly Dr Mike Badminton from Cardiff) and either Dr Alison Cousins or Dr Peter Galloway from Scotland. Outreach clinics will be held once every six months in either Edinburgh or Glasgow. This means that patients in Scotland suffering attacks of an acute porphyria will benefit from the knowledge and best practices of NAPS, while still being seen through an effective network with local porphyria specialists. Doctors caring for hospitalised patients will be able to access the NAPS out-of-hours clinical advice service, which will ensure appropriate access to haem arginate treatment for patients in Scotland.
The aim is that new patients will be seen within six weeks initially, although this may take the form of a virtual appointment or telephone consultation to establish what support is needed. Patients will then be offered an appointment for one of the scheduled outreach clinics.
NAPS contact details: this is the emergency number at the University Hospital of Wales: 029 2074 7747. This 24/7 number should be used at all times for new patients, and out of working hours for existing NAPS patients.