Neurofibromatosis: Health Services

(asked on 9th September 2020) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, how many of the known patients with neurofibromatosis Type 1 were treated at national specialist care centres in the last 12 months.


Answered by
Jo Churchill Portrait
Jo Churchill
Minister of State (Department for Work and Pensions)
This question was answered on 22nd October 2020

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.

The complex NF1 service has approximately 450 patients on its caseload, however the number of patients treated in the last 12 months is not held centrally.

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