NeuroLifeNow update including fresh proof of OT impact on living with neurological disorders
NeuroLifeNow pilot phase finishes with fresh proof of occupational therapy’s impact on living with neurological disorders.
Over 750 people signed up to donate data – lived experiences –to the UK project, NeuroLifeNow, by the end of its three-month pilot phase.
And in total, 640 stories were shared via the NeuroLifeNow app.
The project’s joint co-ordinators, The Brain and Spine Foundation and The Neurological Alliance, are now sharing all of that data with NHS England, NHS Improvement teams and commissioners, neurological specialists and local providers.
It’s hoped it will help to drive rapid and urgently needed improvements in neurorehabilitation provision nationally.
The NLN team also reviews participant feedback on the app’s usability and accessibility amid plans to expand its user numbers.
“We are pulling together plans to improve the platform in a variety of ways,” the charities revealed in their latest NLN update. [1]
“This includes improving the usability of the app itself. In particular, we will renew our efforts to diversify and grow the NeuroLifeNow community.”
So far, the charities have found scant evidence of how sociodemographic factors affect people with neurological disorders, including:
- Sexuality.
- Gender and gender reassignment.
- Race and ethnicity.
- Citizenship.
A literature review is now underway to identify specific knowledge gaps in these areas.
In the meantime, however, here are some of the latest insights into how life was in March for NeuroLifeNow’s data donors:
- Well over 50 per cent felt anxious and/or hopeless.
- 1 in 2 respondents felt their mental health needs were not being met at all or to a small extent.
- Less than 1 in 5 respondents reported ‘good’ or ‘very good’ experience of care, with 19% judging it as ‘poor’ or ‘very poor’.
However, on the upside, three-quartersof the month’s medical appointments were described as being ‘helpful’.
And, encouragingly, 4 out of 5 appointments with an occupational therapist were also rated ‘helpful’.
The NeuroLifeNow app provides support for anyone with a neurological disorder, their carers or family.
Information remains anonymous and is collected monthly via surveys. More information here: https://neurolifenow.org/
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