@NeuroLifeNow

It's time to make your story heard

Joined October 2020
  • Tweets59
  • Following83
  • Followers190
30Media
In March-April 2024, 50% of you were waiting for NHS care. Our @NeuroLifeNow March-April report on the impacts of long waits for care on people with neuro conditions is now out: ow.ly/GBEh50TLTvy #NHS #NHScare #waitinglist #neuro #neurologicalcondition @NeuroAlliance
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In July & August, 50% of you reported the high difficulty of travelling to your appointments. The report's results are now here. Head to the @NeuroLifeNow website to read them: ow.ly/En3T50Q8gKs #report #research #experience #neurologicalcondition #neuro
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The new bi-monthly @NeuroLifeNow survey is now live. Click here to respond to the questionnaire: ow.ly/2pXF50PIPPQ
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What's the reality of living with a #neurologicalcondition in the UK today? Your voice matters! Please take part in this research and drive positive change in neurological #treatment & #care: ow.ly/8Zsv50PlCvk #research #neuro #healthcare @NeuroLifeNow
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Our July-August @NeuroLifeNowsurvey has arrived! Help us drive positive change through #research. This time, we are focusing on the shared issues faced by people affected by different conditions. If you want to share your own experience, click here: neurolifenow.typeform.com/to…
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Our #questionnaire this month focuses on how your #neurologicalcondition affected your job. Want to share your lived experience with us? Don't forget to fill in the May-June survey here: ow.ly/KcjG50OW1T4
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Please help @NeuroLifeNow gain real time insights into your experiences of life with a #neurological condition and complete the survey using this link: bit.ly/3Vx0GhI the May-June survey asks about #employment: #DisabilityTwitter
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Felt misunderstood by your employer regarding your #neurologicalcondition & the challenges you face every day? Remember that your voice is so important to help us drive change. Share your own experience by filling in the @NeuroLifeNow survey here: ow.ly/YPI550OI7BW

NeuroLifeNow Survey - March-April 2023

Here is the latest NeuroLifeNow survey covering May-June 2023. In this edition of the survey, we are asking about your experience of employment. Your lived experience can inform and influence change...

neurolifenow.typeform.com
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Please help @NeuroLifeNow gain real time insights into your experiences of life with a #neurological condition and complete the survey using this link: bit.ly/3Vx0GhI the May-June survey asks about #employment: #DisabilityTwitter
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The #costofliving has never been starker, nor is the case more urgent. The #UKGovernment fiscal plans must #Backthe1in6 with a neuro condition and those closest to them, starting with uprating benefits such as #PIP in line with inflation: ow.ly/rcFe50LFCKN @NeuroAlliance
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We're pleased to share with you the results from the #NeuroLifeNow May-Aug surveys. We asked you to share your experiences accessing #care, and your response to #costofliving: ow.ly/qUuQ50LucCY @NeuroAlliance #Neuro #research #Backthe1in6
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The next edition of the #NeuroLifeNow survey is live and open until the end of October. We continue to focus on understanding how the #costofliving crisis is affecting you. It only takes a few minutes to get your voice heard and complete the survey here: ow.ly/U7sa50KALSA
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In the Jul-Aug #NeuroLifeNow survey, we would like to know how the cost-of-living crisis is affecting you. Your experience is shared with NHS Commissioners, UK Governments and clinicians to influence how #neuro services are delivered: ow.ly/3RyL50JRooe
In Dec 2021, 32% of respondents @NeuroLifeNow said #mentalhealth needs weren’t being met or were being met to a small extent. Join us in responding to the Govt call for evidence to develop a plan to improve mental health for everyone in the UK.bit.ly/3JPQ9a0
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Huge thanks to @NINCA_NI for inviting us to their recent Board meeting where we discussed #NeuroLifeNow and how we can work together to ensure your voice is heard and your needs are met in NI and across the UK. #collaboration @NeuroAlliance
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In Nov-Dec we asked you questions about your priorities and what you would like Government to know. Many of you told us you felt invisible to society, and more should be done to foster greater understanding of #hiddenconditions: ow.ly/VEP850HEHKg @NeuroAlliance @brainspine
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NeuroLifeNow retweeted
FNDHopeUK@FNDHopeUK6 Dec 2021
Announcement - Setting Expectations regarding the Telephone Call-Back Service in collaboration with the @brainspine . Please read our email here: bit.ly/3Gluc0W
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Thank you for contributing to the NeuroLifeNow research. The Sept-Oct results are now available. We are working hard to ensure your voice is being heard, and hope you can see the reality you face each day reflected here: ow.ly/BYFs50GVivI @brainspine @NeuroAlliance
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Reading Eileen’s story highlighting ‘out of control’ #neurology appointments adds to our anger about how our community is being treated. Every day you are telling us how you, or a loved one, are facing similar stark realities. How do you feel about your situation? #Changemakers
The Guardian
@guardian1 Nov 2021
Woman has four-year wait to see Northern Ireland neurologist theguardian.com/society/2021…

Woman has four-year wait to see Northern Ireland neurologist

Exclusive: Eileen Wilson, who has suspected MS, taking legal action, with official admitting health waiting lists ‘out of control’

theguardian.com
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We're looking forward to presenting at @uclWSDforum today! Along with @GCarr_Neuro from @NeuroAlliance, we'll be discussing how #tech like @NeuroLifeNow can boost #recovery after stroke
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