March 12, 2019
We recently launched a UK Government petition to improve the lives of people affected by facial palsy. This is the full information about why this petition is so important. UK residents can sign the petition here.
Facial palsy is a condition resulting from damage or absence or impairment of the facial nerve that supplies the muscles of facial function and expression. It affects blinking, closing the eye (e.g. to sleep), eating and drinking, speech, smiling and frowning. It has many causes, including disease, injury, stroke, birth trauma, cancer, or neurological condition. The most common is Bell’s palsy, which affects between 12,400 and 24,800 people in the UK each year. While most make a full recovery within two or three months, roughly 30% do not. People aged 15–45 are more prone to getting it, including in particular women in the last three months of pregnancy, and more incidences occur during winter. In the UK there is a one in 60 lifetime risk of developing Bell’s palsy.
Despite the large numbers of people affected, the condition is not widely known in the UK. It has received much more publicity in Canada, in part because Jean Chrétien, Prime Minister 1993–2003, has a facial difference following Bell’s palsy in his youth. There has been almost no mention of it in the UK Parliament and this has impacted on the lack of awareness of the condition.
There are many reasons why it is important for Parliamentarians to raise awareness of facial palsy in the UK. First, the physical, emotional and psychological consequences of living with facial palsy can be devastating for those affected and their families. Facial difference cannot easily be concealed, and the onset of facial palsy is typically sudden, which can increase the psychological impact. Second, early treatment for facial palsy can significantly improve the long-term outcome for those affected. It therefore really matters that people know this, and where they can get support. Third, it can create unnecessary barriers to employment, from attending job interviews (where inability to smile may be interpreted as a lack of enthusiasm), to performing certain functions (slurred speech may be harder to understand), to straightforward prejudice about placing people with facial difference in roles such as reception or meeting clients. For people with facial palsy awareness of the multiple challenges in “facing the day” is thus hugely important.
A recent survey of 421 people with facial palsy in the UK found that:
- More than half had suffered with anxiety (58%) and depression (52%) directly linked to having facial palsy.
- Approximately one in five (19%) were misdiagnosed – risking their recovery because they miss vital medications which should be prescribed within 72 hours.
- 42% of those who requested to access secondary care said their GP did not know where to refer them to.
- Of those who accessed secondary care, 57% were initially referred to a clinician who could not help them resulting in additional referrals.
- Over half (58%) of the respondents referred to a specialist waited a year or more for the appointment. For those not destined to fully recover from an acquired facial palsy, many of the treatment options available to restore function in the patient’s native facial muscles start to become less effective/ineffective at this time (depending on patient age, etc.). This means that, not only is the patient’s long-term outcome impacted upon, the cost of any subsequent treatments (e.g. facial reanimation surgery) becomes significantly more expensive.
- Just 42% of those accessing secondary care had been seen by a specialist facial therapist.
There is a lack of trained specialist facial therapists in the UK. Facial therapy is not included in the syllabus at undergraduate level for physiotherapists or speech therapists therefore therapists enter the workplace without any knowledge or understanding about the face. Patients are often incorrectly taught gross motor exercises which can make them at risk of synkinesis; and once ingrained this can be extremely difficult to reverse. Facial therapy has been shown to improve both subjective and objective outcomes for long term facial palsy patients meaning not only does their movement and symmetry improve but also their pain reduces and their confidence and function improves. This can enable patients to return to full active lives rather than becoming socially isolated and low in mood.
As well as raising awareness, support for further research into Facial Palsy is hugely important, not least because of the high prevalence of misdiagnosis.
Please encourage family, friends and colleagues to sign the petition.
Tags: awareness /