Ramsay Hunt syndrome – how patients are being ‘let down’

March 3, 2018

Ramsay Hunt syndrome (RHS), the second most common cause of facial nerve paralysis is frequently being misdiagnosed, according to new research published for Facial Palsy Awareness Week (1-7 March) by charity Facial Palsy UK. Approximately half do not receive the correct treatment in time, risking permanent facial disability. The condition is a type of shingles infection that affects certain nerves in your head. For more information download our patient guide.

Our worldwide Ramsay Hunt syndrome survey was open from 20 June 2017 – 2 February 2018. The results are detailed in two separate reports: UK only and Non-UK. We are also writing the results up into an academic paper with help from researchers. Where figures vary considerably between UK and the rest of the world we have included comparison figures. For those still living with the effects of the condition 12 months after diagnosis, the same ‘top 4’ health issues were reported by UK and non-UK participants with the exception of dry eye/vision problems which are more of a problem in the UK, possibly due to differing climates.

The ‘top 4’ shared issues are:

  1. Facial paralysis
  2. Muscle tightness/tension/facial pain
  3. Fatigue
  4. Vertigo

More than a quarter (27%) of people in the UK who are still suffering with symptoms after 12 months are not receiving any follow-up support.

Our vision for the future

All health professionals will understand the impact of Ramsay Hunt syndrome

All patients with RHS will be routinely offered follow-up care

Experts in facial palsy will be allowed to make decisions about the treatment needs of their patient

There are other under-researched conditions where clinical specialists make decisions without having to defer to local health commissioners. We believe that patients with facial palsy are being discriminated against because their health condition affects their face. The lack of research into facial palsy treatments is compounding matters making it easier for funders to deny patients the help they need. See ‘common pitfalls of EBM’ (evidence based medicine) – BMJ blog – Addressing gaps in evidence.

A Freedom of Information request submitted by Facial Palsy UK in February 2017 found that only 38% of clinical commissioning groups in England routinely fund Botulinum toxin injections for facial palsy patients despite studies showing it can help this patient group. The results of our survey support this with 88% of UK participants and 85% of participants from the rest of the world who had tried this treatment saying it helped. Yet only one in five (21%) have accessed this pain relieving treatment in the UK.

What is the impact of misdiagnosis/poor understanding of the condition?

  • Distress to patients and treatment delays.
  • Cost of treating long-term complications that may have been avoided with earlier antiviral treatment.
  • Cost to NHS of unnecessary referrals – need to get patients to right place, first time.
  • Negative impact on psychological health when treatments/referrals are denied.
  • Patients may suffer from lack of support from employers/peers/family/friends.
  • Poorer recovery rates = cost to the economy due to loss of time at work.

The four principles of person-centered care that the Health Foundation (2014) propose, appear to be missing for many patients with RHS.

  • Affording people dignity, compassion and respect.
  • Offering coordinated care, support or treatment.
  • Offering personalised care, support or treatment.
  • Supporting people to recognise and develop their own strengths and abilities to enable them to live an independent and fulfilling life.

UK Ramsay Hunt syndrome survey report

The full report can be downloaded here.

The highlights are as follows:

Diagnosis & immediate care

206 people took part (32% initially diagnosed, 42% later diagnosed, 26% believed they have had RHS but never officially diagnosed)

Statistics below based on 152 who had a confirmed diagnosis of Ramsay Hunt syndrome (43% initially diagnosed and 57% had their diagnosis changed later)

  • 57% were initially misdiagnosed
  • 53% had no other health problems prior to diagnosis
  • 15% had had RHS more than once
  • 39% officially diagnosed within critical 72 hour window
  • Diagnosis made by GP (42%), ENT consultant (22%), Emergency/A&E (22%) and other clinic (14%).
  • 52% prescribed antivirals in the 72 hour window
  • 72% prescribed steroids in the 72 hour window
  • 19% received no eye care advice

Follow-up care

  • 37% were not routinely followed up by their GP or a hospital clinic
  • The majority of people offered a follow-up appointment at hospital were referred to Ear, Nose and Throat (ENT)
  • 45% said their doctor was not knowledgeable about Ramsay Hunt syndrome

My GP did not diagnose RHS and ignored my complaint of severe ear pain and told me the sickness (vertigo) was ‘bad luck’. Even after I was referred to an ENT specialist and properly diagnosed, my GP still refused to acknowledge RHS and kept saying I had Bell’s palsy.

  • 36% felt their doctor was unsympathetic to the emotional impact of Ramsay Hunt syndrome.

I asked for facial paralysis treatment. I was told NHS has no money for that.

The ‘top 3’ reported issues were:

  1. People had to do their own research to find a specialist.
  2. GP did not know specialist care existed for people with facial palsy.
  3. The GP was unhelpful in providing follow-up care, i.e. making a referral.

Health issues

Top 10 immediate health issues (152 people):

  1. Facial paralysis (unable to make facial expressions) 95%
  2. Eating & drinking problems 90%
  3. Ear pain 84%
  4. Dry eye 82%
  5. Fatigue 80%
  6. Muscle tightness/tension/facial pain 79%
  7. Self-consciousness 77%
  8. Numbness on the face 70%
  9. Speech problems 68%
  10. Low self-esteem 61%

More than half also suffered with tinnitus and hearing problems, anxiety, vertigo and vision problems.

Top 10 health issues after 6 months (121 people who had the condition six months or more and were still experiencing problems):

  1. Muscle tightness/tension/facial pain 69%
  2. Self-consciousness 65%
  3. Fatigue 62%
  4. Facial paralysis (unable to make facial expressions) 61%
  5. Dry eye 59%
  6. Eating & drinking problems 52%
  7. Anxiety 48%
  8. Numbness on the face 46%
  9. Low self-esteem 46%
  10. Tinnitus 45%

Top health issues after 12 months (84 people were asked what their ‘top 3’ long-term health issues were in relation to RHS):

  1. Muscle tightness/tension/facial pain
  2. Facial paralysis (unable to make facial expressions)
  3. Fatigue AND Dry eye/vision problems jointly ranked third
  4. Vertigo
  5. Self-consciousness
  6. Tinnitus
  7. Uncontrolled facial movements/twitching
  8. Depression/anxiety AND Ear pain jointly ranked eighth
  9. Eating & drinking problems
  10. Hearing problems

Vertigo or disequilibrium is constant! Unsure if connected but ‘brain fog’ is an ongoing problem. I am much less active since RHS as walking, even driving takes effort and concentration.

Love to smile again to be able to eat a sandwich and to talk without feeling self-consciousness. I feel sad as if part of me has gone for ever.

The pain, pins and needles in the left side of my face can last anything from a day to a week. I don’t want to talk, eat, stand up or move when my face starts to hurt. It hurts even more when I talk or move my head, all I want to do is lay down and be on my own.

27% of the 84 people who are still suffering are receiving no ongoing support.

Treatments & Therapies

Top 5 treatments which people had tried and found made either a big improvement or were helpful are:

  1. Counselling/talking therapies (88%)
  2. Botox injections (88%)
  3. Hearing therapy (77%)
  4. Physiotherapy (76%)
  5. Massage (72%)

Dental care

  • Out of 76 people who visited a dentist while their face was paralysed 41% report that their dentist had never heard of the condition.
  • 51% said their dentist did not inform them to pay more attention to dental hygiene on the affected side of the mouth while symptoms of facial paralysis lasted.
  • 20% were unhappy with the support offered by their dentist in relation to their symptoms.

Employment

104 people were employed at the time of diagnosis

  • Only 53% were able to return to work within three months
  • 29% received no support on return to work
  • 10% left employment or changed job as a direct result of Ramsay Hunt syndrome

No support from work was offered. However when I returned to work my diagnosis was Bell’s palsy. It took six years for my diagnosis to be changed to Ramsay Hunt

Non-UK Ramsay Hunt syndrome survey report

The full report can be downloaded here.

The highlights are as follows:

Diagnosis & immediate care

115 people took part (29% immediately diagnosed, 55% later diagnosed, 16% believed they have had RHS but never officially diagnosed).

Statistics below based on 97 people who had a confirmed diagnosis of Ramsay Hunt syndrome (35% initially diagnosed and 65% had their diagnosis changed later).

  • 65% were initially misdiagnosed – COMPARISON: UK figure was 57%
  • 48% had no other health problems prior to diagnosis
  • 19% had had RHS more than once
  • 47% officially diagnosed within critical 72 hour window – COMPARISON: UK figure was 39%
  • Diagnosis made by GP (28%), Emergency/A&E (25%), ENT consultant (24%),  Neurologist (18%) and other clinic (5%). – COMPARISON: 42% diagnosed by GPs in UK
  • 65% prescribed antivirals in the 72 hour window – COMPARISON: 52% prescribed antivirals in 72 hr window in UK
  • 80% prescribed steroids in the 72 hour window – COMPARISON: 72% prescribed steroids in 72 hr window in UK
  • 16% received no eye care advice

Follow-up care

My doctor didn’t know anything about RHS. I had to learn on my own how to treat it, who to see…

  • 38% were not routinely followed up by their doctor or a hospital clinic
  • The majority of people offered a follow-up appointment at hospital were referred to ENT
  • 47% said their doctor was not knowledgeable about Ramsay Hunt syndrome
  • 39% felt their doctor was unsympathetic to the emotional impact of Ramsay Hunt syndrome.

The ‘top 3’ reported issues were:

  1. People had to do their own research to find a specialist.
  2. Doctor had a lack of knowledge about the condition.
  3. No local experts in the condition.

Health issues

Top 10 immediate health issues (97 people):

  1. Facial paralysis (unable to make facial expressions) 94%
  2. Fatigue 86%
  3. Muscle tightness/tension/facial pain 83%
  4. Eating & drinking problems 83%
  5. Dry eye 81%
  6. Ear pain 78%
  7. Self-consciousness 74%
  8. Speech problems 68%
  9. Tinnitus 66%
  10. Numbness on the face 66%

More than half also suffered with hearing problems, vertigo, vision problems, low self-esteem, depression, anxiety, neck pain and uncontrolled facial movements/twitching.

Top 10 health issues after 6 months (77 people who had the condition six months or more and were still experiencing problems):

  1. Muscle tightness/tension/facial pain 68%
  2. Facial paralysis (unable to make facial expressions) 66%
  3. Fatigue 60%
  4. Self-consciousness 53%
  5. Dry eye 52%
  6. Uncontrolled facial movements/twitching 51%
  7. Eating & drinking problems 49%
  8. Tinnitus 47%
  9. Hearing problems 45%
  10. Numbness on the face 45%

Top health issues after 12 months (52 people were asked what their ‘top 3’ long-term health issues were in relation to RHS):

  1. Facial paralysis (UK no. 1 – Muscle tightness/tension/facial pain)
  2. Muscle tightness/tension/facial pain (UK no. 2 – Facial paralysis)
  3. Fatigue (UK no 3 – Fatigue AND Dry eye/vision problems jointly ranked third)
  4. Vertigo (UK no 4 – is the same)
  5. Ear pain
  6. Hearing problems
  7. Uncontrolled facial movements/twitching
  8. Dry eye/vision problems
  9. Tinnitus
  10. Depression/anxiety

Treatments & Therapies

Top 5 treatments which people had tried and found made either a big improvement or were helpful are:

  1. Botox injections (85%) COMPARISON: UK (88%) – 13% had tried Botox compared to 21% in the UK
  2. Massage (65%) COMPARISON: UK (72%) – 41% had tried massage compared to 42% in the UK
  3. Physiotherapy (65%) COMPARISON: UK (76%) – 27% had tried physiotherapy compared to 41% in the UK
  4. Counselling/talking therapies (56%) COMPARISON: UK (88%) – 16% had tried counselling both in UK and non-UK 
  5. Acupuncture (50%) COMPARISON: UK (58%) – 27% had tried acupuncture compared to 22% in the UK

N.B. Hearing therapy scored least helpful in non-UK statistics (25% found it helpful compared to 77% in the UK)

Dental care

  • Out of 38 people who visited a dentist while their face was paralysed 50% report that their dentist had never heard of the condition.
  • 71% (51% by comparison in UK) said their dentist did not inform them to pay more attention to dental hygiene on the affected side of the mouth while symptoms of facial paralysis lasted.
  • 37% (20% by comparison in UK) were unhappy with the support offered by their dentist in relation to their symptoms.

I have been to several dentists, trying to find one that is willing to take the time to handle my face gently. They all say they will but there is an attitude of disbelief that the effects of RHS are real. This is in the US.

Employment

63 people were employed at the time of diagnosis

  • 64% were able to return to work within three months
  • 8% left employment or changed job as a direct result of Ramsay Hunt syndrome

As soon as I got RHS, I felt I was no longer valued.

My company was amazing. I am an outside sales rep. They gave me 10 weeks off then a reduced
schedule until I was ready.

Action required

From the survey results we have agreed the following future actions:

Diagnosis

  1. Facial Palsy UK to raise additional funds to increase awareness with GPs. Distribute Facial Palsy UK Ramsay Hunt syndrome patient guides to GP surgeries and/or raise awareness via shingles information leaflets distributed via NHS England.
  2. A flow-chart for diagnosis would be helpful for GPs on FPUK’s new Health Professionals’ website.
  3. Campaign for dedicated page on NHS website for facial nerve palsy with information about Ramsay Hunt syndrome and other causes. Information about RHS is currently only on the shingles page. If the shingles rash appears later (or not at all) patients may be misdiagnosed with Bell’s palsy.

Health issues

  1. Highlight the ongoing physical and emotional issues of facial palsy from any cause.
  2. Promote the need for more research into interventions that are most beneficial.
  3. Advocate for patients who are being denied funding for treatments that can help

Treatments and therapies

  1. Facial therapy for facial palsy is a postgraduate specialism usually carried out by specially trained physiotherapists or speech therapists. Facial Palsy UK to investigate ways of supporting specific training in facial palsy rehabilitation for therapists. Online training resources and supervised practical experience are required.
  2. NHS/NICE guidance needed to ensure patients are only referred to facial therapists with specialist skills to avoid causing irreversible complications such as synkinesis.
  3. Campaign for more research into outcomes with specialist facial therapy to manage facial pain/spasms/synkinesis.
  4. Campaign for more research to show the benefits of botulinum toxin injections to treat facial palsy.
  5. Speak to Botulinum toxin companies about possible sponsorship to raise awareness.

Patient referrals

  1. Getting the patient to the right place first off reduces NHS costs, i.e. avoids unnecessary referrals. Look at ‘best practice’ sites and promote NHS pathways to improve care of patients with facial palsy. https://www.england.nhs.uk/rightcare/what-is-nhs-rightcare/
  2. In the interim Facial Palsy UK to prioritise raising awareness with ENT UK about support and treatments available so patients can be referred to specialist clinics.

Other key points

  1. PR campaign to highlight lack of support for this patient group.
  2. Facial Palsy UK to raise awareness with dentists about the condition, e.g. via social media and dental conferences.

News Categories: Facial Palsy Awareness Week  / General news  / Research  /    ||    Tags: ramsay hunt syndrome  / shingles  /