Neurofibromatosis

(asked on 9th July 2014) - View Source

Question to the Department of Health and Social Care:

To ask Her Majesty's Government what is the scale of neurofibromatosis Type 1 in the United Kingdom.


Answered by
Earl Howe Portrait
Earl Howe
Deputy Leader of the House of Lords
This question was answered on 14th July 2014

The number of people with neurofibromatosis type 1 (NF1) in England is estimated to number 11,267. The condition can be mild in some patients, manifesting itself only in patches of skin discolouration and soft benign bumps under the skin (neurofibromas), but for others NF1 causes more serious complications, including a rare form of cancer, curvature of the spine and nerve problems caused by more invasive neurofibromas.

Since 1 April 2013, NHS England has been responsible for securing high quality care for all patients with complex NF1 as part of its specialised commissioning responsibilities. NHS England's NF1 service specification clearly sets out what needs to be in place for providers to offer evidence-based, safe and effective care, ensuring equity of access to a nationally consistent, high quality service. Specialist care is delivered by two designated centres based in Manchester (Central Manchester University Hospitals NHS Foundation Trust) and London (Guys and St. Thomas' NHS Foundation Trust, London) and these provide outreach support into other cities. The service is available to all patients with a suspected or confirmed diagnosis of NF1.

The service specification can be viewed on the NHS England website at the following link:

www.england.nhs.uk/wp-content/uploads/2013/06/b13-comp-neurofib-1.pdf.

Reticulating Splines