Patients with facial palsy report huge social and psychological impacts of living with the condition which is poorly understood by many health professionals.
This is compounded by the struggle to get an appropriate specialist referral when recovery from facial palsy is delayed. New research published for Facial Palsy Awareness Week (1–7 March) by charity Facial Palsy UK lays bare the challenges patient face. The charity is urgently calling on decision-makers to improve the pathways of care for people with facial palsy.
Drawing on survey responses from 329 people with facial palsy, less than half (45.9%) of patients referred to their usual hospital were confident in the care they received; under a third (28.6%) felt the health professional / team involved in their care recognised the psychological impact of facial palsy. In contrast, when patients were referred to hospitals with facial palsy specialists, 78% were confident in the care received and 61.3% felt that the health professional/team recognised the psychological impact of facial palsy. Outside of hospital, only one in ten respondents felt that GPs recognise the impact of living with facial palsy.
For those still struggling with the effects of facial palsy:
- Just 23.7% now enjoy attending social events such as weddings compared to the 86.8% who enjoyed them prior to having facial palsy.
- Only 31.7% enjoy eating out at restaurants compared to 93.2% prior to having facial palsy.
- Only a quarter (26%) feel comfortable speaking to new people since having facial palsy compared to 89.8% before the condition struck.
Nearly 90% of respondents are calling for ‘greater recognition of facial palsy as a serious and potentially long-term health condition’ and for ‘there to be clearer understanding about which type of specialist provides care for patients with facial palsy’.
Dr Simon Lowe, Member of Facial Palsy UK Medical Advisory Board says: “There is a common misconception amongst health care professionals that patients with acute onset facial palsy will nearly always recover. This together with limited training and the lack of a coherent care pathway in the UK leads to suboptimal treatment, both acutely and for patients with unresolved symptoms. As a result, there is significant unnecessary morbidity, both physical and psychological. There is an urgent need for clinicians and health care commissioners to recognise this and invest in this condition.”
Forty-two-year-old Verity Connor from Southampton says: “I was diagnosed with Bell’s palsy in November 2020. Left to my own devices by the NHS, I was just told to come back in three months if I hadn’t recovered. There was no routine follow-up and I searched the internet for information, in a support group someone recommended electroacupuncture which I decided to try. It’s taken me three years to see an NHS specialist and experts have now told me the electroacupuncture was likely to have made my condition worse. The muscles in my face and neck are now so severe and painful that they have recommended surgery.”
This survey shows that during Facial Palsy Awareness Week (1–7 March) 2024 it is more important than ever to raise awareness about facial palsy. Achieving earlier diagnosis and improved pathways of care for those affected could greatly improve patient outcomes and save NHS money – a double win.
For more information, visit: https://www.facialpalsy.org.uk/
