16/11/12 – Care is Uneven for Facial Palsy Sufferers

Treatment Deemed ‘Cosmetic’ – First-Ever Facial Palsy Charity Launches

London – 16 November, 2012 – Facelifts, brow lifts, Botox and dermal fillers may sound like treatments from the realm of wealthy socialites and Hollywood actors but these, among other new and cutting-edge procedures influenced by the world of aesthetic surgery can be life-changing for those living with facial palsy. Over 100,000 people in the UK suffer with the condition due to myriad causes including cancer, injury, neurological issues, infections, strokes or syndromes. However treatment is unfortunately deemed ‘cosmetic’ by much of the NHS and therefore largely unavailable. The UK’s first-ever charity dedicated to facial paralysis, Facial Palsy UK (www.facialpalsy.org.uk) launches today, unveiling new figures which show that, out of an already woefully inadequate number of specialists, at least one in five report there is no provision whatsoever in their PCTs for treatment.

Despite tens of thousands of people living with the condition, the charity reveals that 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 (19%) struggles 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.

According to consultant plastic surgeon and chairman of Facial Palsy UK’s medical advisory board Charles Nduka;

“Despite facial paralysis being widely misunderstood as just a ‘cosmetic’ problem, our surveys show that not being able to express emotion easily is considered the most frustrating aspect of the condition by a small percentage of sufferers – in comparison, four out of ten 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.”

Facial Paralysis: NEW facts and figures

  • There are less than fifty consultant surgeons in the UK that list facial palsy as their specialism and part of their practice
  • Of those who do, one in five (19%) struggle to offer patients procedures such as blepharoplasty (eyelid surgery), brow lifts, facelifts and Botox as they are either classified as cosmetic surgery and therefore funding is unavailable, or there is no policy whatsoever for treatment
  • Consultants within those constraints are forced to apply for special permission on a case-by-case basis, sometimes taking several months and often getting turned down
  • When surveying a random selection of PCTs, one had facial palsy under cosmetic commissioning guidelines, 18 had no published local or regional policy
  • Only one in ten facial palsy sufferers said that ‘Not being able to express emotion easily’ was the most frustrating aspect of the condition. Functional issues such as not being able to close mouth or eye was cited by two out of three (43%)
  • More than half (52%) of facial palsy sufferers say their GPs were unable to satisfactorily answer their questions about the condition (‘Not at all well’), with less than three out of ten (29%) saying their questions were answered ‘Slightly well’. A modest 16.1% said ‘Moderately well’ and none agreed with ‘Very well’
  • When asked how easy it was to get a referral to a specialist, a third (33%) said ‘Not at all easy’, 16% said ‘Slightly easy’ and only 12% said ‘Extremely easy’
  • The most common reason for not receiving specialist treatment given by patients was (cited by 41%) ‘I wasn’t aware more help was available’, closely followed by 36% saying ‘I was told there was no specialist treatment available’
  • Despite 81% of facial palsy sufferers not requiring any special or extra support in the workplace, close to half (45%) feel the condition has hindered their career prospects, and three out of five (59%) have held back from applying for jobs because of it.

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) with botulinum toxin (Botox) to relax over active muscles creates tremendous changes in how patients feel.

According to Charles Nduka;

“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.”

ENDS

About Facial Palsy UK

Facial Palsy UK (www.facialpalsy.org.uk) aims to improve understanding of facial palsy among the public and the medical profession, and improve access to treatments currently available, as well as raising funds for research into new treatments. The need for a charity specifically for facial palsy was recognised following a survey conducted by a specialist clinic which noted that the average duration between the onset of paralysis and referral to a specialist for treatment was 5.6 years, and patients were travelling from across the UK (including Northern Ireland and Scotland) in order to be seen. Worryingly, quality of the information given by health professionals varied widely and there were limited resources in the community to support patients, their relatives and partners. Very few research projects investigating the causes and treatments of facial palsy are being undertaken currently, and that was another key reason for setting up Facial Palsy UK – to raise funds for medical research into the various causes of facial palsy and how it might be prevented, the effects and consequences for people living with the condition, and new treatments for facial palsy.

For media enquiries contact us on 0300 030 9333 or media@facialpalsy.org.uk

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Last reviewed: 20-11-2016    ||    Next review due: 20-11-2018