What is advocacy?
Advocacy is a process of supporting and enabling people to:
- access information, services and treatment.
- express their views and concerns.
- defend their rights.
- explore choices and options available.
Why do people with facial palsy need advocacy?
At the moment, many of those with facial palsy across the UK lack access to high-quality, appropriate and timely treatment, support and services. A perception that the condition is ‘cosmetic’ rather than medical is one significant factor that may inhibit patients from seeking or receiving support. At the same time, having a facial difference can make children and adults a target for bullies.
Is there a ‘postcode lottery’ for facial palsy treatment?
A postcode lottery refers to the way local budgets and decision-making can lead to varying access to NHS services, depending on what postcode you fall into.
‘You can’t deny that a postcode lottery does exist for facial palsy, and I feel passionate about making sure that GPs and hospital consultants know where and how to refer people. I also want the whole medical team to offer support and be sensitive about that mirror moment when your whole body image alters’ (Sarah).
There are major disparities and inequalities in patients’ access to treatments for facial palsy, including specialist physiotherapy, botulinum toxin injections for synkinesis, and reanimation surgery. In England, patients require a referral from their GP to access hospital services yet neither patients nor GPs may be familiar with the specialist support necessary and available.
‘The doctor lacked empathy, his knowledge about the condition was poor and his attitude was dismissive. He informed me that no treatments were available, or provided on the NHS, to treat facial palsy’ (Ollie).
‘I was given a 10-minute appointment with a neurosurgeon who curtly told me that my nerves wouldn’t ever recover and I would just have to accept the fact that nothing could be done’ (Julie).
Challenging decisions to refuse treatment tend to be dealt with by local Clinical Commissioning Groups (CCG) and other health care funders on a case-by-case review basis. There is a need to develop national guidelines rather than continuing to rely on local referral criteria or none.
‘After reading about a specialist facial palsy clinic I booked an appointment and was staggered to find an amazingly supportive set of people ready to help’ (Julie).
‘The verdict was that that was it … there was no hope of any further recovery. …. However, in the last 18 months, I have seen real improvements thanks to the botulinum toxin injections and the physiotherapy I’ve been having. I look better, and as a result I feel more confident, with an improved ability to express myself and communicate’ (Laura).
Evidence from the Facial Palsy Clinic at Queen Victoria Hospital shows that:
- On average, patients waited 5.6 years before being referred to a specialist for treatment.
- Patients had to travel long distances, including from Northern Ireland and Scotland in order to be seen.
- Some patients are given incorrect information by health professionals.
- There are limited resources in the community to support patients, their relatives and partners.
‘This operation could have changed my life but I didn’t know about it until it was too late’ (Bethan).
What does Facial Palsy UK aim to achieve?
Facial Palsy UK aims to:
- Conduct research to gain a clearer picture of need and provision, including NHS commissioning body guidelines on the provision of treatments for facial palsy.
- Inform medical professionals as well as those with facial palsy about available treatments and services.
- Promote patient-centred approaches and empathy amongst medical professionals for those with facial palsy.
- Develop national guidelines for best practice.
- Support patients in seeking access to treatment.
- Inform patients of their rights regarding seeking treatment from an alternative health board or Clinical Commissioning Group, where more specialist care may be available.
Where to start when seeking treatment?
Getting a referral to a specialist support centre
Patients generally require a referral from a GP in order to be treated at an NHS hospital. In England, patients referred for a first outpatient hospital appointment can choose to go to any NHS hospital that provides that service, or a private hospital: you can therefore nominate a preferred site for treatment.
What to do if you are refused access to treatment
If you feel you do not receive adequate support or are refused treatment, you may want to seek advice. Since 2009 a single complaints system has been in operation, covering all health and adult social care services. A useful source of advice if you are in this position is PALS, the Patient Advice and Liaison Service. PALS can give you information about the NHS complaints procedure, including how to get independent help if you want to make a complaint. You can find your nearest PALS office through their website: NHS Patients and Liaison Service.
Why can’t facial palsy be dismissed as a cosmetic issue?
The common misperception that facial palsy is a ‘cosmetic’ issue rather than a medical condition may mean it comes to be seen as a low priority for public funding; the emotional, social, economic, cultural and psychological impacts of facial palsy are frequently underestimated or not taken seriously.
‘Facial palsy is a ruinous condition … It is not a cosmetic issue. It is connected to the very roots of what a person is and how they interact with others and the surrounding world’ (Dan).
Those with facial palsy may experience or fear being judged vain, shallow or self-obsessed if they seek treatment; some even perceive themselves in this way. They may be told that the ‘problem’ lies in their ‘attitude’ rather than their symptoms.
‘Facial palsy is a deeply isolating experience’ (Ali).
‘I felt robbed of my identity’ (Laura).
However, facial palsy has many serious functional effects.
‘My eye was often red and sore, I regularly had eye infections and I wasn’t being prescribed any lubrication for it. Little was I to know that I had in fact been lost in the system’ (Karen).
In addition, the ability to make facial expressions plays a key role in non-verbal communication, and facial palsy also affects speech. Many occupations involve face-to-face contact with members of the public or clients, in which both verbal and non-verbal communication or ‘interface’ are considered crucial. Among those whose employment status has been threatened by facial palsy are many in service sector and front line jobs: teachers, shop workers, actors, tour guides, language interpreters, including sign language specialists.
Research among those attending the Facial Palsy Clinic at Queen Victoria Hospital shows that there is evidence of psychological distress/issues in patients at the point of referral, both before and after treatment: 40.5 per cent of patients, particularly women, showed evidence of mood disorder or anxiety; 60 per cent triggered borderline issues which needed to be acknowledged by psychological services and other health care professionals. Importantly, the degree of facial palsy does not affect the levels of psychological distress experienced by an individual – a mild facial palsy can have a severe psychological impact.
How can Facial Palsy UK help challenge misconceptions about facial palsy?
Facial Palsy UK aims:
- to research and raise awareness of the serious emotional, social, economic, cultural and psychological impact of facial palsy on those who experience it.
- to challenge the trivialisation of the condition.
- to provide support networks for those who experience facial palsy.
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Last reviewed: 10-03-2018 || Next review due: 10-03-2020