Profile: Facial Palsy UK

9th January 2013

 

Over 100,000 people in the UK suffer with facial palsy due to myriad causes including cancer, injury, neurological issues, infections, strokes or syndromes. However treatment is deemed ‘cosmetic’ by much of the NHS and therefore largely unavailable. I am part of the UK’s first-ever charity dedicated to facial paralysis, Facial Palsy UK, and we have found that at least one in five specialists report there is no provision whatsoever in their PCTs for treatment.

Despite tens of thousands of people living with the condition, there are less than fifty consultant surgeons in the country listing facial paralysis treatment as their specialism and part of their practice. A previous survey highlighted that patients take on average 5.6 years from presenting symptoms to referral to a specialist, but out of those few consultants available, one in five struggle to provide care as there is no routine funding allocated as treatment deemed to be ‘cosmetic’. This means that procedures such as those mentioned above, as well as innovative muscle transplants for ‘smile re-animation’, require special permission and lengthy appeals that are frequently turned down.

Despite facial paralysis being widely misunderstood as just a ‘cosmetic’ problem, our surveys show only one in 10 facial palsy sufferers said that ‘not being able to express emotion easily’ was the most frustrating aspect of the condition. In comparison, four out of 10 cite functional issues as being the most problematic: such as not being able to close their mouth or one eye properly. 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.

There have been exciting advances in the treatment and care of facial palsy, and the charity aims to spread knowledge about new developments such as:

•  “Smile transplants” (or Smile Re-Animation Surgery): Some patients may be suitable for a muscle transplant, in which a functioning muscle from else in the head is diverted to create a smile (for example the temporalis muscle). Alternatively a muscle transplant may be taken from elsewhere in the body such as the leg or chest.

•  Platinum chains: Eye closure is impaired in facial palsy and without lubrication, the cornea can dry and become scarred even leading to loss of vision. Historically, a gold weight (in the shape of a small rectangle) has been implanted in the eyelid, although in many cases a platinum (more dense, and hence smaller) implant 'platinum chain’ can result in dramatically less complications.

•  Neuromuscular retraining: Patients often cannot feel what their facial muscles are doing which makes rehabilitation particularly challenging. A combination of surface electromyography (sEMG biofeedback) with botulinum toxin (Botox) to relax over active muscles creates tremendous changes in how patients feel.

Facial Palsy UK was launched to improve the quality of care for the thousands living with facial paralysis. Problems faced include delayed diagnosis, a lack of awareness of suitable treatments amongst some health professionals, and a poor appreciation of the psycho-social implications of losing the ability to smile and the use of one side of the face. Facial Palsy is not a ‘cosmetic’ but a functional problem affecting important activities such as eating, drinking and protecting the eye. A major aim for our charity is to highlight to health professionals which patients need specialist treatment, and provide support networks to reduce the sense of isolation that many patients feel. We also aim to raise funds to support clinical and basic science research in the hope that one day everyone suffering with facial palsy can be given back their smile.

For more information visit www.facialpalsy.org.uk
 
​Charles Nduka

 

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