01/03/19 – Facial palsy patients decry poor care pathways resulting in misery and NHS waste

Incorrect referrals and delays are a drain on the NHS that cause misery for the 100,000 people affected by facial palsy, according to charity Facial Palsy UK. A recent survey found that patients experienced on average two wasted appointments and the most common reason for not getting a referral was because their GP didn’t know where to send them. Over half the respondents reported suffering from anxiety and depression, well above the national average.

Facial Palsy UK is calling for improved pathways of care to improve patients’ quality of life and reduce the number of incorrect NHS referrals. Facial palsy (paralysis of the face) affects basic human functions such as smiling, speaking, closing the eye for sleep, eating and drinking. With up to 21 different physical issues including pain, and a grossly underestimated psychological impact, the lack of joined-up care causes unnecessary distress and ruins lives.

A survey of 421 UK adults with facial palsy found that over half of those who requested to access secondary care waited a year or more, despite NICE guidelines recommending those with incomplete recovery after three months should be referred to a facial nerve specialist. One in five people were misdiagnosed risking their recovery. Psychosocial impact of facial palsy is immense, of those who acquired facial palsy, their enjoyment of social events such as weddings decreased by 69% compared to life before. Just 6% now like being photographed.

According to Catherine Parr, 28, who has had recurrent Bell’s palsy since the age of two:

At 23 I had another episode of Bell’s palsy I went to my local hospital, then to another after the first hospital felt ill-equipped to handle my case. I received a course of steroids and then waited four months for an MRI and even longer to see a neurologist. I was also sent to ophthalmology but all they said was ‘why didn’t you come to us when you were four? We could have done something.’ I couldn’t believe it. But no further help was offered.

In their recent survey, Facial Palsy UK reported on statistics for more recent cases of Bell’s palsy from 2012-2018 showing an average of 2.8 wasted appointments. 60.7% had at least one appointment with a consultant, surgeon or therapist who couldn’t help them because they weren’t an expert.

Karen Johnson, Deputy CEO of Facial Palsy UK said:

We communicate verbally and non-verbally through our faces and it is the focus of attention when people meet. Any condition that alters the face can have a huge impact on our sense of self. Three quarters of those surveyed said they had suffered with low self-esteem as a result of facial palsy. In today’s selfie culture with the rise of Instagram there is huge pressure, particularly on young people, and cameras are everywhere. All of these problems are made worse by lack of routine health care. It invalidates people’s feelings as if this isn’t a ‘real’ health condition. The NHS needs to improve referral processes and standardise tests and investigations, so people don’t suffer needlessly. Optimal follow-up care will improve their quality of life, as well as reduce NHS inefficiencies.

Catherine who suffered during childhood said:

The bullying at school began with name calling: Ugly Wonk, Clown face, Crip, oh so many. I began to loathe myself, comfort ate and ballooned to over 26 stone. With more support from the NHS I truly believe my mental health would have been saved. But I despaired, hid away, and deteriorated. I am now holding my daughter back from starting pre-school because I fear that she will be bullied because of my face.

As part of Facial Palsy Awareness Week (1-7 March) the charity is calling for an urgent review into the NHS care for this patient group. For more information visit www.facialpalsy.org.uk

ENDS

For further information call 0300 030 9333 or email Karen Johnson on media@facialpalsy.org.uk. Website www.facialpalsy.org.uk. Facial Palsy UK is a charity registered in England and Wales (1148115) and Scotland (SC045086)

Images and more case studies available from: Facial Palsy UK, media@facialpalsy.org.uk Tel: 0300 030 9333

Notes to editors

Full survey results

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YouTube link: https://youtu.be/boj-uxXEtsw

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Last reviewed: 01-03-2019    ||    Next review due: 01-03-2025