NAPS Scotland: NHS Scotland continues to commission support for Scottish acute porphyria patients and their doctors from the English NAPS service. These arrangements came into operation as of 1 April 2016.
There is a formal shared care arrangement between NAPS doctors (mainly from Cardiff) and the Scottish Inherited Metabolic Disorders Service (Dr Eve Miller-Hodges (East) or Dr Peter Galloway (West). Outreach clinics will be held once every six months in either Edinburgh or Glasgow, and have continued virtually throughout the COVID pandemic. 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 of 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 diagnostic testing and 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.
Scottish Inherited Metabolic Disorders Service (SIMDS) contact details (referrals are only accepted from another clinician, e.g. GP or other specialist):
- Dr Eve Miller-Hodges: Metabolic Unit, Anne Ferguson Building, Western General Hospital, Edinburgh, EH4 2XU