House of Lords debate applauds ‘excellent work’ of Genetics team at Saint Mary’s Hospital, Manchester
A debate in the House of Lords this week applauded 'the
excellent work' carried out at Central Manchester University
Hospitals NHS Foundation Trust and Guy's and St Thomas' to improve
the service for patients suffering from the genetic condition
neurofibromatosis type 1 (NF1).
The debate highlighted that whilst centres, such as the one
based at Saint Mary's Hospital, Manchester, are running excellent
clinical services, there is a national shortage of specialist
clinics to work with patients, their families and health
professionals to improve their care, and made an appeal to
Government to improve the diagnosis and treatment of NF1.
The Manchester Centre for Genomic Medicine, based at Saint
Mary's Hospital, is currently one of two centres that lead the
national response for NF1 in England.
Dr Sue Huson, Consultant Clinical Geneticist for the
Neurofibromatosis Service at Manchester Centre for Genomic Medicine
"The NF1 service we run in Manchester continues to successfully
manage our NF1 patients with very complex disease.
"Our service ensures that a diagnosis is made as early as
possible, improves learning outcomes for children with NF1, and
significantly improves their capacity to work as adults.
"We continue to develop the service and raise awareness of this
relatively unknown condition, to improve outcomes for the 11,000+
people in England living with NF1."
NF1 affects one person in every 2,500; therefore it is more
common than Cystic Fibrosis and Muscular Dystrophy, but unlike
these conditions, NF1 does not have the same high profile amongst
the general population. The condition mainly affects the
nervous system and the skin. Neurofibroma (benign tumours)
can form on nerve coverings on or under the skin and can cause
Most people with NF1 experience skin changes and do not suffer
from further health problems. However, some NF1 patients can
have major health problems. These can include benign and
malignant nerve tumours, abnormalities of bone, learning
difficulties and some particular kinds of brain tumour. This
can involve having to see a number of different specialists
including Geneticists, Neurologists, Neurosurgeons, Plastic
Surgeons and Ophthalmic (Eye) Surgeons.
For more information, please visit www.mangen.co.uk and www.nfauk.org.