NeuroLifeNow

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NeuroLifeNow

Share your daily realities of living with a Neurological Condition to inform positive change. Please tell us about your life.

It’s never been more important to understand the impact of the pandemic and the realities you face each day in accessing care. Living with a condition that affects the brain, spine or nervous system can be lonely, isolating, and difficult. Your unique experience is valuable and can dramatically improve the future of health and care. Answer a few questions every month through the App, NeuroLifeNow.

Your experiences will remain safe and protected and will be anonymised. The insight you provide will influence change with funders and providers of neurological services. Our monthly snapshot survey means that we can monitor changes in access to health and care during the COVID-19 pandemic.

14/12/2024

After a few months of hiatus, we've come back with a new NeuroLifeNow survey!

This time, we would like to better understand your experiences of travelling for health and care.

Please respond to the December-January survey so that we can make the case for the right care to be delivered as close to home as possible.
The survey will close on the 31st of January 2025.

This should only taking a few minutes to complete. By sharing your thoughts, you can help transform the lives of the millions of people in the UK living with neurological conditions: https://ow.ly/GiSB50UqOkq

The Neurological Alliance

15/10/2024

In March-April 2024, 50% of you were waiting for NHS care, and 44% of those said they had not received any information from the NHS whilst waiting.

Our NeuroLifeNow March-April report on the impacts of long waits for NHS care on people with neurological conditions is now out:https://neurolifenow.org/wp-content/uploads/2024/10/22-NLN-Report-Mar-Apr-2024-Full-Report_finalv1.pdf

The Neurological Alliance

25/06/2023

Don't forget to fill in our May-June survey, which focuses on how your affected your job.

Help us drive change & share your lived experience with us by clicking in the following link: https://ow.ly/RlvA50OW2in

03/03/2023

Do you feel listened to by health and care professionals? Now is the time to get your voice heard. Complete the next edition of the Neuro Life Now survey here: http://ow.ly/m2xs50N7gFj

16/11/2022

In September and October, many of you told us you weren’t sure how you would cope financially with rising costs. You said that you were ‘slipping through the net’ of financial support, as this has not been targeted. Many of you also told us the importance of financial support when you did get it, with support such as Personal Independence Payments ( ) helping you to manage some of the extra costs you face.

The picture has never been starker, nor is the case more urgent. The fiscal plans released tomorrow by must provide targeted support for the one in six living with a neurological condition and those closest to them, starting with uprating benefits such as PIP in line with inflation.

Read the full report here: http://ow.ly/nXgQ50LFCG2

04/11/2022

Between May and August, we asked you to share your experience accessing and your response to the rises. You can read the full reports here: https://neurolifenow.org/hub-neuro/

In your opinion, how could the UK show it is committed to improving the lives of people affected by conditions? Let us know by completing the November survey here: http://ow.ly/kqaB50Luc79

07/09/2022

The next edition of the survey is live and open until the end of October. We continue to focus on understanding how the crisis is affecting you. It only takes a few minutes to get your voice heard and complete the survey here: http://ow.ly/k0Nq50KALSx

28/07/2022

In July and August we would like to understand how the cost-of-living crisis is affecting you. By reporting the challenges you face every day, you're influencing how neurological services are delivered for millions of people affected by neuro conditions. Fill in the short questionnaire today: http://ow.ly/Vctn50K1Wj9

09/07/2022

In the July-August survey, we would like to know how the cost-of-living crisis is affecting you. Your lived experience is shared with NHS Commissioners, UK Governments and clinicians to influence how neurological services are delivered. Fill in the questionnaire today: http://ow.ly/wwhl50JRo8Y

10/03/2022

Late last year, Prime Minister Boris Johnson confirmed that a UK-wide strategy for Acquired Brain Injury (ABI) and other conditions would be developed. This significant milestone reinforces the strength of the community, including you - and your contribution to .

Government is launching a call for evidence about what should be within the new strategy in Spring. Now is the time to share your priorities! You can contribute your views by logging into NeuroLifeNow and filling in the survey by 31 March 2022: http://ow.ly/4NBt50IfViH

The Neurological Alliance

26/01/2022

Thank you for your continued contribution to social research. We are delighted to share with you the results from your November-December 2021 survey.

During those months, we asked you open questions about your priorities and what you would like the Government to know. Many of you told us you felt invisible to society, and more should be done to foster greater understanding of hidden conditions. You can read the full report in the the 'News' section within the app or here: http://ow.ly/VEP850HEHKg

The Neurological Alliance Brain & Spine Foundation

Address

Brain And Spine Foundation, Canopi
Southwark
SE14YR

Website

http://neurolifenow.org/

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