Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what discussions his Department has had with neurofibromatosis charities to help raise awareness of the condition.

NHS England has 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 complex NF1 which are based at Guy’s and St Thomas’ NHS Foundation Trust and Central Manchester University Hospitals 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.

In 2010, a nationally funded service was established for patients in England with a diagnosis of neurofibromatosis type 2 (NF2). The purpose of this service is to ensure patients are managed consistently by experienced doctors within a multi-disciplinary setting and that they receive the highest standard of care. The service for NF2 is co-ordinated from four major clinic centres: Manchester, Cambridge, Oxford and London. Each centre has a clearly defined geographical area of responsibility and runs peripheral clinics within that area, contributing their expertise to ensure the same standard of service and care is maintained.

Over the last few years, there has been an increase in the awareness of NF through more training of doctors and nurses, particularly through community paediatricians, development of guidelines with nurses, and links with genetic and neurology clinics. Links between expert centres have developed and improved the transfer of patients whose condition is complex to the centres. Professionals at the expert centres including consultants and specialist nurses also undertake the usual range of activities to raise awareness of the condition by giving lectures and presentations, attending conferences and publishing papers in medical journals.

In April 2018, the former Parliamentary Under Secretary of State for Public Health and Primary Care (Steve Brine MP) met the Childhood Tumour Trust to discuss, amongst other things, raising awareness of NF.