Neuro Life Now

Conditions of the brain and spine affects 1 in 6 of the UK population at any one point in time. That’s over 16.5 million cases. However, the resource provided in the UK to help people with these conditions is woefully inadequate and disjointed (by contrast, for example Germany and France have 4x the number of neurologists). It is a huge issue. And yet, hardly anyone knows about it. Even fewer talk about it. And fewer still act to address it.

According to the latest survey of more than 10,000 people with neurological conditions, 1 in 4 people with a neurological condition say that their healthcare needs aren’t being met. 1 in 2 waited over a year to see a neurologist. Our ambition is to harness “people power” to change this - by collecting hundreds of thousands of real life experiences of the challenges and frustrations of living with these conditions - and using this to both call for, and to help direct, the change that is needed.

There is unwarranted variation in the provision of care and people’s access to it. The authorities that fund neurological treatment and care often do not work with one another, are independent and uncoordinated. Despite the number of people impacted, neurology hasn’t received significant investment, or attention from Government. This has to change.

This causes those affected from a neurological condition to experience the poorest quality of life outcomes for any health condition in UK. Inevitably, that means distress, discomfort, huge anxiety (for them and family and carers). Conversely, the right care can make all the difference and support people to live independently.

It doesn’t have to be this way.... and changing things can start with your story... By signing up and sharing your experience, you will be helping yourself and helping others to manage their brain (or spine) condition and its consequences.

Now is the right time: As a consequence of the pandemic, the NHS is fundamentally reviewing it’s operations: “re-setting” and redesigning the way it provides services for all patients, including neurology. It needs to, and wants to, hear from patients and those affected. They are listening.

Download the NeuroLifeNow app and on a monthly basis answer a few simple questions on the reality of your experience. Complete the 10 minute survey each month for 6 months and NLN will collate your evidence, with thousands of others, to put a compelling case for change to the service commissioners. By doing this, you will be helping those who are re-setting the NHS approach to service provision understand your needs and demands. Your voice, along with others like you, will be heard.