07 January 2019
– Melanie Gamble, Mother of child with NF1
"When our daughter was diagnosed, we were in shock. Fortunately, we were able to speak with a Support Specialist, who explained everything and has been an extraordinary support ever since."
Charity Launches #OneMoreNurse Campaign to End Health Postcode Lottery For Those With Nerve Tumours
Nerve Tumours UK is launching its #OneMoreNurse campaign to end the postcode lottery faced by those with nerve tumours needing access to specialist medical advice and support.
Every day in the UK, a child is born with neurofibromatoses – genetic disorders that have a major impact on the nervous system and lead to tumour formation. Some inherit the condition, others are affected by a random mutation. Nerve tumours can affect any ethnicity, class or sex, and there are currently over 26,000 people in the UK who have one of the neurofibromatoses.
– Karen, Charity Director
"We need at least five more NF nurses - that’s an additional £125,000 a year, so let’s make a start and help thousands more people."
Many health care professionals have little knowledge of nerve tumours and the manifestations of the neurofibromatoses. For example, Neurofibromatosis Type 1 (NF1) predisposes people to many complications which affect most of the body systems. Their occurrence is unpredictable, and complications include disfigurement caused by plexiform neurofibromas, brain tumours, sarcomas, breast cancer epilepsy, scoliosis, rare causes of hypertension. Children with NF1 have an IQ approximately 10 points lower than their peers and problems with working memory and coordination make schooling a real challenge. With approximately 50% of NF1 children developing ADHD and 25% ASD, early diagnosis is crucial.
Some years ago, the charity launched a scheme in partnership with the NHS to provide regional nurse support specialists, but this is not yet available throughout the UK. Nerve Tumours UK is now seeking to end this postcode lottery by raising additional funds through its #OneMoreNurse campaign.
– Michael Fry, Chair of Nerve Tumours UK
"Our Support Specialists provide crucial medical and emotional support to patients with NF. But there are large areas of the country that don’t have access to this support – we need at least five more Support Specialists."
As Melanie Gamble, whose child has NF1, says, “When our daughter was diagnosed, we were in shock. Fortunately, we were able to speak with a Support Specialist, who explained everything and has been an extraordinary support ever since.”