Since the beginning of the pandemic our supporters have shared ongoing concerns about their ability to access support, care and treatment.

While some people with dystonia have accessed more medical experts than ever before, thanks to the increase in specialist video appointments from the NHS and our own expert-led webinars and conferences, other members of the dystonia community express a deep distress over lack of support.

With that in mind, we are backing the new app, NeuroLifeNow, developed by The Neurological Alliance and Brain and Spine Foundation. This recently launched platform gathers data, which will feed directly into NHS recovery plans for people with neurological symptoms and conditions, like dystonia. 

In February, 256 people with 56 different neurological conditions shared their experiences of care with the app. Of them, 58 percent said they felt anxious and/or hopeless. This group was also more likely to have reported delays to their care in the four weeks prior. Those who experienced delays and cancellations were also more likely to have needed emergency care, with 30 percent saying their mental health needs were not being met. Results also reflected a gender gap, with women being more likely than men to report issues accessing mental health support.

NeuroLifeNow has already shared their February findings with Ministers at the Department of Health and Social Care, and their findings will directly feed into NHS recovery plans. They are also scheduled to report their findings to NHS England, NHS Improvement, NHS commissioners and neurological specialists. These discussions will be taking place in April and May 2021.

As the only UK-wide charity representing people living with dystonia, we want the future of neurological care and the recovery plans developed with input from NeuroLifeNow to reflect what’s most important to you.

Why should you take part?

The data so far is based on responses from people with a wide range of neurological conditions and symptoms, including just 13 people with dystonia. If 50 or more people with dystonia take part, NeuroLifeNow will begin providing us with condition specific data, which can be used as evidence in all our policy related work. It will also help us identify what is most important to you.

The NHS and social care providers need to know just how much people with neurological conditions like dystonia have been affected by the pandemic. By sharing your stories about health and care services, you can help change the future of neurological care.

How does it work?

The platform collects stories and experiences of people living with neurological conditions, including those with dystonia, from across the UK. You will be asked to answer a few questions each month about your access to health and care services. Each month you’ll receive a report back on what you, and others like you, are saying. 

Your data and your experiences will be anonymised, so you cannot be identified by sharing your experiences. Only representatives from the Brain and Spine Foundation and Neurological Alliance will be able to access your data. If you change your mind you can opt out at any time.

How do I take part?

Click here for more details on how you can sign-up.

Published: 6th April 2021.