Tackling misinformation online and in hospitals and GP settings

January 24, 2024

One of our many tasks here at Facial Palsy UK is to tackle misinformation, this can be online, provided by a hospital, GP or other clinician.

Specialist facial therapy

We work in partnership with Facial Therapy Specialists International (FTSI) an organisation which provides support, research and education on specialist facial therapy internationally. FTSI was founded having established that many people receiving therapy for Bell’s palsy and other similar conditions (for example, Ramsay Hunt syndrome, Lyme disease, local tumours and-post surgical conditions), were receiving non-specialist treatment from general therapists who had little experience in the specific needs of this patient group.

Inappropriate treatments such as gross facial exercise, strength training and electrical 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[1] of international facial therapy experts.

A recent example of poor healthcare advice is where a physiotherapist prescribed ‘platysma strengthening’ exercises. This type of ‘gross strengthening’ for facial palsy can cause additional problems for patients with a delayed recovery. This is because such patients often develop muscle synkinesis and contracture throughout the affected facial muscles resulting in muscle imbalance, reduced facial movement, reduced function and facial pain alongside significant psychosocial challenges. Therefore, gross strengthening work prescribed during recovery will potentially exacerbate these issues. Patients with platysma synkinesis often require additional interventions alongside specialist facial therapy to reverse the effects of debilitating muscle overactivity and tightness including botulinum toxin treatments and selective neurolysis surgery.

Unfortunately, undergraduate therapy degrees for physiotherapists, speech and language therapists or occupational therapists do not cover such specialisms as facial nerve palsy. The treatment of facial nerve palsy is a post-graduate area of special interest and requires significant post-graduate training. Orthopaedic and neurological techniques normally applied to the body do not work for the face and many ‘typical’ therapeutic exercises are contraindicated.

If you are a patient with a delayed recovery from facial palsy and you are referred to a therapist without specialist training in facial palsy and they speak about ‘strengthening muscles’ or they offer electrical treatments, it is likely to be inappropriate. We would encourage you to contact Facial Palsy UK to discuss with our specialist team.

How Medical Standards Organisations could help

Organisations like the Chartered Society of Physiotherapy and the Royal College of Speech and Language Therapy accredit educational training and set professional standards for their members. They could support the need for improved treatment for this patient group and provide additional pre- and post-graduate continuing professional development and education for therapists. This could be as much about how not to treat, for example, to ensure that physiotherapists without specialist training do not attempt to treat a patient with Bell’s palsy without taking expert advice.

How NHS websites could help

Ramsay Hunt syndrome is not mentioned on the NHS.uk website yet the condition is commonly misdiagnosed as Bell’s palsy in the UK. Facial Palsy UK’s 2018 survey found that 57% of patients with Ramsay Hunt syndrome were initially diagnosed and only 52% were prescribed antivirals in the critical 72 hour window for optimal treatment[3]. If the public were educated about a possible differential diagnosis of Ramsay Hunt syndrome they could research the symptoms and approach their doctor if they had concerns they had been misdiagnosed. This is important because antivirals and steroids are normally prescribed for patients with suspected Ramsay Hunt syndrome whereas for Bell’s palsy, steroids alone would be prescribed. Research shows that Lyme disease is the most common cause of facial palsy in children[4], this condition has its own page on the NHS England website and omits facial palsy as a possible symptom.

NHS Inform, the Scottish NHS website does not include Bell’s palsy or facial palsy but makes a small mention of Ramsay Hunt syndrome on their Shingles page.

There is a lack of information about facial palsy on the NHS websites; greater transparency about the parameters for inclusion of conditions or diseases would help both patients, charities and professionals. Indeed, poor diagnosis and treatment is costing the NHS resources for facial palsy because patients are not getting the right treatment, right place, first time; better access to resources and information is key to enabling patients to manage their condition.

The impact of poor information and lack of access to specialist treatment

As high-quality care is difficult to access via the NHS for facial palsy, patients may be attracted to private providers offering poorly evidenced treatments. One of the problems with facial palsy is that it can be dismissed as purely a cosmetic issue by generalist clinicians causing great psychological distress. At the same time companies manufacturing beauty devices make claims about their use for treating Bell’s palsy. A lack of pathways of care for this patient group creates risk as patients will often look elsewhere for help.

How clinicians can help

We are holding a Facial Palsy webinar on the 6th March 6pm -7.30 pm, led by clinicians, for clinicians. The session will give an overview of facial palsy and cover a GP perspective, secondary care, specialist facial therapy and psychosocial wellbeing.

Please help us by advertising this event through your own clinical and professional networks; we are trying to raise awareness amongst clinicians who are not specialists in facial palsy but would be interested to know more about facial palsy, where and how to get specialist help for example, and how to better support individuals with facial palsy.

Important note: this webinar is strictly for clinicians and you may be asked for verification before accessing the webinar.

Please register on Eventbrite:

Click this link to book your ticket

How NHS commissioners and managers can help

Work with us to improve pathways of care within your NHS trust and healthcare system. In Facial Palsy UK’s 2023 ‘Treat Me Right’ Survey[5], 142 respondents had to request further follow-up health care and weren’t routinely referred. Almost half (45.1%) found that their GP did not know who or where to refer patients to.

Patients that were referred were seen by the following specialities:

• ENT (35.4%)
• Ophthalmology (22.1%)
• Specialist Facial Palsy Clinic (17.9%)
• Neurologist (17.1%)
• Plastic Surgeon (15.4%)
• General Physiotherapist (10.8%)
• Specialist Facial Therapist (10.4%)
• General Speech & Language Therapist (10.4%)
• Psychologist/Mental Health Services (1.7%)

Of 240 respondents who had a secondary care appointment, 35.8% said the clinician they were referred to was not experienced in facial palsy and offered no onward referral to a specialist. Only 12.7% were referred to a specialist. We believe that one of the issues why patients are not seeing the right clinician, first time, is that facial palsy does not come under one speciality. A proper care pathway for those individuals would improve patient experience and reduce costs to the NHS (since patient appointments are wasted as people are referred to the wrong clinician for their needs); whilst early intervention could avoid the need for surgery.

Facial Palsy UK’s Medical Advisory Board is creating a template pathway of care. Contact us on info@facialpalsy.org.uk if you would like to receive a copy once it is available.

How patients can help

Have you received poor advice or read confusing information about facial palsy? If so, would you be able to tell us about your experience so that we can work to improve the situation for others?

If you would like to comment click the link to complete the online form.

Click this link to go to our feedback form

Facial Palsy Awareness Week is 1-7 March. Find out other ways you can get involved here.

1. 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.
2. www.nhs.uk/conditions/bells-palsy/
3. FPUK Ramsay Hunt syndrome survey results 2018
4. lymediseaseuk.com/clinicians/facial-palsy-resources/
5. FPUK Treat Me Right Survey Results 2023