Neurofibromatosis

(asked on 28th July 2014) - View Source

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.


Answered by
Earl Howe Portrait
Earl Howe
Deputy Leader of the House of Lords
This question was answered on 18th August 2014

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.

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