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<p>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.</p><p> </p><p>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.</p><p> </p><p>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.</p><p> </p><p>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.</p>
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