Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, what recent assessment he has made of the adequacy of treatment provision for people diagnosed with Acid Sphingomyelinase Deficiency.
Acid sphingomyelinase deficiency is a lysosomal storage disorder (LSD). NHS England and its predecessor organisation have commissioned a national service for patients with LSDs since April 2005. The service is commissioned from eight expert centres and NHS England monitors these expert centres against the agreed service specification:
https://www.england.nhs.uk/wp-content/uploads/2013/06/e06-lyso-stor-dis-child.pdf
The active caseload of LSD patients treated in the service is just under 2,000. NHS England’s Highly Specialised Commissioning team conducts an annual clinical audit meeting with the multidisciplinary teams from all the providers and with representatives from relevant patient groups.