No medical ‘home’ for Facial Palsy or the patients affected

March 4, 2024

The theme for Facial Palsy Awareness Week (1-7 March 2024) is ‘Recognising Facial Palsy’.

In July our charity Facial Palsy UK will be entering its thirteenth year. Back in 2016 in collaboration with Research Now (now Dynata) we conducted a survey[1] to understand what the general public know about facial paralysis including their expectations in relation to treatments for facial paralysis. Of 509 participants, when shown a picture (right) of someone with Bell’s palsy, 70% assumed they had had a stroke but when prompted 65% said they had heard of Bell’s palsy. Around two thirds felt that Bell’s palsy could be treated with medication (66%) and physiotherapy (60%). Expectations among the general public are therefore high that Bell’s palsy is a treatable condition and that physiotherapy should help. Bell’s palsy is the most common cause of facial palsy.

Figure 1: Chart from Facial Palsy Awareness Survey published 1 March 2016.

Fast forward to 2024, we recently published the results of a survey about pathways of care for people with facial palsy, and the psychological and social impact of the condition[2]. There were 329 respondents and the results lay bare the issues with poor medical care, as well as highlighting the problems arising from the lack of formal pathways for facial palsy in the UK. Nearly 9 out of 10 respondents (87.5%) want there to be clearer understanding about which type of specialist provides care for patients with facial palsy. It is apparent that facial palsy does not have a medical ‘home’. It doesn’t have its own page on the NHS website because it is often seen as a by-product of another condition, it doesn’t come under any one medical specialism. This is possibly why there appears to be a lack of responsibility for this patient group within the NHS. Disorders of the facial nerve are not on the syllabus for the Physiotherapy or Speech and Language Therapy degrees. Orthopaedic and neurological techniques normally applied to the body do not work for the face and many ‘typical’ therapeutic exercises are contraindicated. The Specialist Facial Therapists who treat patients with facial nerve palsy undertake post-graduate training. But even with the right training, clinic leads face difficulties in getting NHS funding for a specialist facial therapist.

Inappropriate treatments such as strength training, effortful facial exercise and electrical stimulation treatments are recognised to do more harm than good in this patient population and were excluded by consensus in a recent treatment guideline research study[3] of international facial therapy experts. This is why training and funding are so important.

Our 2016 survey results demonstrated that there is an expectation that facial palsy is treatable with physiotherapy yet we are struggling to get this on the undergraduate syllabus for degree courses.

In our 2024 survey we asked people if they were seen by their usual hospital or a different one. 133 respondents were referred to their usual hospital for follow-up care, where they would normally go for their hospital treatment. For most their GP made the decision where to refer (45.1%). Less than half (45.9%) of these 133 respondents were confident in the care they received at their hospital appointment.

Figure 2: Referrals to the patient’s usual hospital. Who made the initial decision where patients should be referred? Survey published 1 March 2024.

117 respondents were initially seen by a different hospital to the one they would attend normally and 56 respondents who had initially been seen at their usual hospital were later referred to a different one. Noticeably patients were taking control of their own recovery (30.6%) and researching where they wanted to be referred to, some with help from Facial Palsy UK (15.0%). Of these 173 respondents, 78% were confident in the care they received at this hospital.

Figure 3: Referrals to a different hospital to the patient’s usual hospital. Who made the decision where patients should be referred? Survey published 1 March 2024.

45.9% vs 78% confidence in the care received is a huge difference, and patients were instrumental in advocating for themselves and their treatment. The government should be considering not only the impact on patients’ outcomes when getting them to the right place, first time, but also the socio-economic impact as a whole.

The survey also asked about the psychological and social impact and found it to be immense. The chart below showing the life-altering effects of this condition.

Fig 4: The social impact of living with facial palsy. Survey published 1 March 2024.

Our faces are a vital tool in everyday communication and today, more than ever before, used for identification. At passport control we are now assessed by computers instead of humans and recent advice given to one of our community members by the Passport Office was that they would need to apply for a new passport if their face had changed due to facial palsy. We would always challenge that advice because it is unfair to expect someone to pay for a new passport due to a medical condition.

AI (artificial intelligence) tools are touted as being useful for employers carrying out video interviews, the supposed benefits that the AI-driven facial analysis tools can identify micro-expressions that flash across a candidate’s face for a fraction of a second. These expressions are thought to provide clues about traits like honesty, confidence and emotional stability. It is also claimed that AI can help in assessing a candidate’s level of engagement, enthusiasm and authenticity during the interview. Clearly people with facial palsy are at a disadvantage when assessed via this type of technology. Even without new technologies threatening our confidence in these situations, interviews are difficult when your face does not work in the expected way.

I went for a mock interview, it was part of a careers training day arranged by my school. The interview went okay-ish; the man said I was fine in personality, but I looked sad. He said I was a difficult person to explain because I was extrovert in personality and introvert in my looks, because I had everything going for me yet I had my chin down and hardly ever smiled. Huh?! Still, I couldn’t expect him to know I can’t smile properly… Extract from the diary of a 16-year-old with facial palsy in 1985.

Advertisers frequently use photographs of smiling people to attract attention to a product or service and relay a message of positivity. The research Frequency, Context and Characteristics of Smile Used in Advertising[4] analysed 600 advertisements from 46 European magazines and newspapers. It found that people were present in over 70% of the newspaper advertisements, and almost 80% of them were smiling. In 82% of cases teeth were visible during the smile. Smiles are valuable in the business world but overlooked by the NHS.

In December 2023 the Nuffield Trust health thinktank warned that “NHS dentistry is at its most perilous point in its 75-year history and radical action will be needed to prevent its further decline”[5]. Tooth decay was named as the most common reason for a hospital admission for children aged 6-10. Why are conditions that cause facial pain and impact the ability or willingness to smile made such low priority?

I was diagnosed with facial palsy in June 2013.  I had a number of symptoms that did not match a ‘Standard Bell’s Palsy’ but when I attended ED I was dismissed as having a Bell’s Palsy and told I would get better in a few weeks – 4 days later I could no longer walk or use my arm.  It took a long time to diagnose Lyme’s disease and my facial palsy was not treated by the NHS. 1 year later I was told very unsympathetically that I would never get better and that was it. Can you imagine hearing you had lost your identity, and you would be offered no support? Janet Robb, Belfast.

Being the first charity to specifically support people with any cause of facial palsy and only established in 2012, many people are still only just finding out about us. Many people have been left without hope for years due to a lack of awareness among health professionals about the help that is available. We are trying to change that, but we need your help to get the word out there that our charity exists and can help. We also need to challenge why there is no medical ‘home’ for Facial Palsy.

I was unaware the option to see a specialist existed until Facial Palsy UK advised me and sent me a letter to give to my GP detailing why I should have been seen by a specialist team years ago. Survey respondent.

1. Facial Palsy Awareness Week Survey 2016
2. Facial Palsy Awareness Week Survey 2024
3. Neville C, Beurskens C, Diels J, MacDowell S, Rankin S. Consensus Among International Facial Therapy Experts for the Management of Adults with Unilateral Facial Palsy: A Two-Stage Nominal Group and Delphi Study. Facial Plast Surg Aesthet Med. 2023 Nov 3. doi: 10.1089/fpsam.2023.0101. Epub ahead of print. PMID: 37922418. Link
4. Frequency, Context and Charateristics of Smile Used in Advertising. Link.
5. NHS dentistry “gone for good” without radical action, think tank warns. Link.