Facial paralysis sufferers are not getting access to treatment because health commissioners believe the medication used to treat the condition is “cosmetic”, a charity has warned.
Sufferers can face an assortment of symptoms, including being unable to close their eyes or use their mouths properly, but many are being denied treatment on the NHS.
More than 100,000 people in the UK are affected by the condition, which can be caused by multiple factors including cancer, injury, neurological issues, infections, strokes or syndromes.
Experts in the field have set up a charity, Facial Palsy UK, to raise awareness about the condition and to help sufferers.
Patients wait an average of 5.6 years before they are referred on to a specialist, a spokeswoman for the charity said.
Across the country, there are less than 50 consultant surgeons who specialise in the condition.
And one in five of those claim they struggle to provide care for patients because there is no routine funding allocated as treatments, which include muscle transplants, facelifts, eye lid surgery and Botox injections, are deemed to be “cosmetic”.
Consultants often have to ask for special permission just so they can treat their patients, a process which can take several months.
Charles Nduka, consultant plastic surgeon and chairman of Facial Palsy UK’s medical advisory board, said: “Sadly there is very little awareness, even among the medical community itself, of the latest advances in care as well as the vital importance of early treatment.
“Over a third of patients were actually told that nothing can be done, when this is clearly not the case. With all these constraints it is little wonder that three out of five people with facial paralysis suffer anxiety and depression.”
Speaking at the launch of the charity at Guy’s Hospital, London, patients spoke not only of the physical difficulties which come as a result of the condition but the psychological difficulties.
They said that there was little support for people with the condition.
“Everyone says that laughter is the best medicine, but not when it makes you a target for bullies,” said patient Karen Johnson.
The 43-year-old from Peterborough, was born with unexplained facial palsy.
“My facial palsy mean that I could not close or blink one eye and although I could pull a smile on both sides, I couldn’t open my mouth to laugh properly,” she said.
“I trained myself to stop laughing so no one would notice my condition.”