Objectives/aims The Neurological Alliance’s patient experience survey 2018/19 aimed to gather relevant data of the experiences of 10,000 neurology patients across England, in order to reveal how patients are faring, and to provide insight about the impact service provision (or lack thereof) is having in people’s lives. It is the only pan- neurological national survey of neurology patients. Mental wellbeing questions were included to build our understanding of service provision and whether people’s needs are being met.
Methods An online and in-clinic survey was conducted during the course of 2018–2019. The online survey was promoted by The Neurological Alliance’s member organisations (predominantly charities), and via social media. The in-clinic data was collected from patients attending neurology outpatient appointments at 39 clinics across England. The data underwent a rigorous cleaning process. Data regarding patient’s home postcodes was collected in order to be able to attribute responses to STPs. Results were subsequently anonymised prior to analysis.
Results Of those to whom these questions were relevant:
40% of respondents (n=2879) felt their mental wellbeing needs were not being met at all, and an additional 22% (n=1613) said their needs were only being met to a small extent 30% (n=2821) had not been referred or signposted to support for their mental wellbeing by a health professional, but would have liked this 58% (n=5593) said they were not asked about their mental wellbeing by a health or social care professional.
Of those referred/signposted for mental health support, 26% (n=616) were referred to a neuropsychologist/neuropsychiatrist, 60% (n=1452) to a counsellor/therapist, 7% (n=167) to a buddying/befriending support group 62% (n=1249) said this support helped them feel better/more positive; 24% (n=481) said that this support did not make them feel better/more positive; 14% (n=270) said it was not suitable for them.
The older respondents were, the less likely they were to have been signposted to support for managing their mental health: 18–24s scored 36%, 55–64s scored 26%, 65–74s scored 17%, and 75+ scored 12%. People aged 75+ were most likely (67%) to report they did not need/want signposting.
Conclusions The data gathered enhances our understanding of the mental wellbeing of people with neurological conditions, and provides a baseline for monitoring improvement/future interventions, such as the forthcoming neuropsychiatry service specification.
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