PARLIAMENTARY WRITTEN QUESTION
Neurofibromatosis: Diagnosis (13 October 2020)

To ask the Secretary of State for Health and Social Care, what steps he is taking to (a) improve rates of early diagnosis of neurofibromatosis type 1 and (b) raise public awareness of that condition.

Asked by:
Dr Kieran Mullan (Conservative)

NHS England and NHS Improvement have commissioned a national specialised service to address the healthcare needs of neurofibromatosis type 1 (NF1) patients with rare complications that cause major health problems, called complex-NF1. There are two centres responsible for the diagnosis and long-term care of patients with complex NF1, which are based at Guy’s and St Thomas’ NHS Foundation Trust and Manchester University NHS Foundation Trust.

These centres also provide education with the National Health Service to raise and maintain awareness of NF1 and are expected to form a relationship with local health and social care providers to help optimise any care for complex NF1 patients provided locally.

Answered by:
Jo Churchill (Conservative)
27 November 2020