Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps she is taking to help improve (a) diagnosis times for hypophosphatasia, and (b) treatment and condition management for patients with this condition in Bromsgrove and the Villages.
NHS England is supporting earlier diagnosis of hypophosphatasia through its rare disease programme, including work by the Adult Rare Bone Disease Rare Disease Collaborative Network and Metabolic UK to improve recognition of persistently low alkaline phosphatase results and prompt appropriate investigation, specialist referral and genomic testing where indicated.
Asfotase alfa is recommended by the National Institute for Health and Care Excellence for paediatric onset hypophosphatasia and is commissioned through specialist paediatric and adult providers, including two in the West Midlands, with national network arrangements and homecare support helping patients access appropriate treatment. While NHS England does not currently hold information identifying individual patients with hypophosphatasia in Bromsgrove and the Villages, access to specialist assessment and treatment is organised through national provider and network arrangements rather than being dependent on proximity to a designated centre.