Question to the Department of Health and Social Care:
To ask Her Majesty’s Government what arrangements are being made to treat patients with neurofibromatosis Type 1 who do not meet the thresholds set at the two designated national specialist care centres.
NHS England’s service specification for complex Type 1 neurofibromatosis (NF1) sets
out what providers must have in place offer evidence-based, safe and effective care, ensuring equity of access to a nationally consistent, high quality service. The specification sets out a number of aims and objectives for the service which includes the operation of a rolling programme of clinical audit to test current practice and inform the evolution of care for patients with complex NF1.
The complex NF1 service is accessible to all patients with a suspected or confirmed diagnosis of NF1, subject to an appropriate referral. Those patients identified by the service as having non-complex NF1 will have their care transferred to the appropriate local team as required.