Funding in facial palsy

Kilshaw, A; Holmes, William John; Matteucci, Paolo

doi:10.1016/j.bjps.2016.08.008

Cited by 5 publications

(4 citation statements)

References 4 publications

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“…Corroborating other reports (Jing et al, 2014; Kilshaw et al, 2016; Pattinson et al,2021), this study indicates that many UK FP patients have inadequate access to specialist services. As well as education and training for health professionals on the functional and psychosocial impacts of FP, there is pressing need to review how FP is managed at a national level.…”

Section: Discussionsupporting

confidence: 83%

“…The male perspective was therefore underrepresented – a common limitation of visible difference research (Egan et al, 2011; Sharratt et al, 2018; Zucchelli et al, 2020). Further, access to and provision of FP care and treatment varies around the UK (Jing et al, 2014; Kilshaw et al, 2016), and half the sample lived in the South East of England. Additionally, there was often confusion amongst participants about the professional background and specific specialism of the health professionals they had met.…”

Section: Discussionmentioning

confidence: 99%

“…However, in the UK, a high proportion of patients are unable to access specialist FP treatments, and thus, the voices of this group remain unheard. Recent reports indicate only 13% of health care clinical commissioning groups routinely fund treatment, with General Practitioners (GPs) and commissioners often designating FP an appearance‐related or ‘cosmetic’ issue rather than acknowledging the functional deficits (Jing, Thomas, & Nduka, 2014; Kilshaw, Holmes, & Matteucci, 2016). A recent UK Delphi study to identify research priorities reinforced the current inadequacy of care for people affected by FP (Hamlet, Rumsey, Williamson, Johnson, & Nduka, 2018).…”

Section: Introductionmentioning

confidence: 99%

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‘Your face freezes and so does your life’: A qualitative exploration of adults’ psychosocial experiences of living with acquired facial palsy

Hamlet

Williamson

Hotton

et al. 2021

British J Health Psychol

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Objectives Facial palsy (FP) is a highly visible appearance‐affecting condition and can have a significant impact on facial function. Qualitative research focussing on adults’ experiences of living with acquired FP is limited. This study aimed to explore the psychosocial impact of acquired FP and to gain a greater understanding of patients’ experiences of treatment and care in the United Kingdom. Design A qualitative interview study with individuals living with acquired FP. Methods Ten adults with acquired FP were recruited. Their experiences were explored using semi‐structured telephone interviews. Data were analysed using thematic analysis. Results Five master themes were identified through the thematic analysis: 1) grappling with a new identity, 2) the psychosocial impact of living with facial palsy, 3) isolation: dealing with ‘one hell of a problem on your own’, 4) a life on hold, 5) coping strategies. Findings indicated high levels of distress and significant challenges in managing the functional and psychosocial changes associated with acquiring FP. Participants expressed grief for their former appearance and identity, with photographs and mirrors acting as agonizing reminders. Many reported a sense of abandonment due to uncoordinated care and, as a result, engaged in an endless and often fruitless pursuit to gain control over FP by experimenting with their own treatment. Many reported the negative impact of their altered facial expressions on social interactions and a fear of being negatively evaluated. Conclusions This study highlights a pressing need to review how FP is managed in the UK. To improve patient well‐being, health care professionals could benefit from FP education, and patients from timely access to psychological support and clearer standards of care following diagnosis.

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Section: Discussionsupporting

confidence: 83%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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‘Your face freezes and so does your life’: A qualitative exploration of adults’ psychosocial experiences of living with acquired facial palsy

Hamlet

Williamson

Hotton

et al. 2021

British J Health Psychol

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“…However, although the study clearly demonstrates positive attitudes toward the introduction of digital technology, economic barriers may prove to be a challenge. Previous research has identified funding as a barrier for access to surgical treatments for FNP in England [65] and more recently in Wales, Scotland, and Northern Ireland [66]. This study has similarly identified funding barriers to NMR referral.…”

Section: Conclusion and Implications For Technology Introductionmentioning

confidence: 61%

Raising the Digital Profile of Facial Palsy: National Surveys of Patients’ and Clinicians’ Experiences of Changing UK Treatment Pathways and Views on the Future Role of Digital Technology (Preprint)

Szczepura¹,

Holliday²,

Neville³

et al. 2020

Preprint

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BACKGROUND Facial nerve palsyparalysis (FNP) is the most common sudden onset disorder affecting a single nerve, leaving patients unable to adequately move muscles on the affected side of the face. Patients with FNP may experience challenges in accessing facial neuromuscular retraining (NMR), a therapy used to increase muscle and improve nerve function health care. Access and therapy delivery could potentially be improved via telerehabilitation. However, there is limited research on patients’ and clinicians’ experiences of FNP treatment pathways, or their views about the benefits of digital technology to assist NMR. OBJECTIVE This study aimed to gather evidence about FNP treatment pathways in the UK, barriers to accessing NMR, factors influencing patient adherence, measures used to monitor recovery, and the potential value of an emerging wearable digital technology. METHODS National surveys of (1) facial palsy patients and (2) facial therapy specialists to gather evidence. Questionnaires were co-designed with users, and followed a similar format to enable cross-referencing of responses. A follow-on survey (3) of national specialists investigated outcomes used to monitor recovery in greater detail. Analysis of closed questions dependent on data distribution; open text responses analysed using thematic content analysis. RESULTS National survey responses included (1) 216 facial palsy patients and (2) 25 specialist therapists. Significant variations observed in treatment pathways. Evidence of more rapid initial prescribing of corticosteroids (prednisolone) and earlier referral for NMR therapy in cases diagnosed more recently. Patients report 3·27 (SD=1.60) treatments provided by different specialists, but multidisciplinary team reviews are rare. Barriers to NMR referral include difficulties accessing funding, shortage of specialist therapists, and limited awareness of NMR amongst general practitioners (GPs); 33% of GP referrals initiated by patients themselves. Patients travel long distance to reach an NMR specialist centre; 8.6% travel ≥ 115 miles. Thematic content analysis demonstrates positive attitudes to the introduction of digital technology among patients and clinicians, with similar incentives and barriers identified by both. Follow-on survey (3) 28 specialists show no consistency in measures used to monitor recovery, or in the definitions of a clinically significant change. Three main barriers to NMR adherence are identified by therapists and patients, all of which can be addressed by a suitable digital technology. CONCLUSIONS This study provides evidence on patients’ and clinicians’ experiences of FNP treatment pathways, and their views on the value of digital technology to enhance provision of NMR and improve outcomes. Possible ways in which the emerging digital technology can improve therapy provision and provide more rigorous evidence on effectiveness are described. The study highlights the need to better understand patients’ and clinicians’ experiences. It is suggested that one legacy of the COVID-19 pandemic will be lower organisational barriers to this digital technology introduction, especially if cost-effectiveness can be demonstrated. CLINICALTRIAL

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Consensus research priorities for facial palsy: A Delphi survey of patients, carers, clinicians and researchers

Hamlet

Rumsey

Williamson

et al. 2018

Journal of Plastic, Reconstructive & Aesthetic Surgery

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Funding in facial palsy

Cited by 5 publications

References 4 publications

‘Your face freezes and so does your life’: A qualitative exploration of adults’ psychosocial experiences of living with acquired facial palsy

‘Your face freezes and so does your life’: A qualitative exploration of adults’ psychosocial experiences of living with acquired facial palsy

Raising the Digital Profile of Facial Palsy: National Surveys of Patients’ and Clinicians’ Experiences of Changing UK Treatment Pathways and Views on the Future Role of Digital Technology (Preprint)

Consensus research priorities for facial palsy: A Delphi survey of patients, carers, clinicians and researchers

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