My Neuro Survey 2021/22 — Scope | Disability forum
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My Neuro Survey 2021/22

Richard_Scope
Richard_Scope Posts: 2,946

Scope community team




Share your experiences and help improve neuro services:

 Fill out #MyNeuroSurvey Getting the right care, treatment and support at the right time can make a life-changing difference when you have a neurological condition, like Cerebral Palsy.

But there are huge variations across the UK – not everyone with a neurological condition in the UK has access to the same high quality, joined-up care and support. This has to change now.

Please help improve services for everyone living with a neurological condition by filling out My Neuro Survey. There is a version for adults and a version for children and young people. If your child has a neurological condition, you can complete the survey with them or on their behalf.

1. Visit //qhweb.co.uk/myneuroNAM?GEN OR
2. Call the survey partners, Quality Health on 0800 783 1775 (Freephone) to: • hear and complete the survey over the phone in any language • ask for a paper copy to be sent to your address • ask for a large print version • ask for an Easy Read version of the survey
3. Tell everyone you know about #MyNeuroSurvey Share your experiences. By sharing your experiences, you’ll help to gather the evidence to make the case for change. My Neuro Survey is completely anonymous and secure. Make a real difference Data from previous surveys has been used to improve services in hospitals, develop new specialist centres, and spark debate in Parliament.

The survey takes around 20 minutes to complete. Please take part and make your voice heard. Find out more about My Neuro Survey or complete the survey now. Thank you.
Scope
Specialist Information Officer and Cerebral Palsy Programme Lead

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Comments

  • forgoodnesssake
    forgoodnesssake Member Posts: 389 Pioneering
    I started filling this in for my family member with CP but, as ever, found it too simplistic and just didn;t have the options needed. 
    Questions about services such as physio, OT and SALT give no option to say "they are offered only on an acute basis" and the whole bit about "thinking back to before your diagnosis" is not really at all relevant for CP, and then asks how long between seeing GP and a neurologist...well in my son's case it was about 23 years!
    And the question about social care support didn't give an option to say "NHS Continuing healthcare support" - seemed to just assume that any care/support would be from the LA social services dept.
    Disappointing really as i when I got to the above point I realised we couldn't really fill in any more..
  • Richard_Scope
    Richard_Scope Posts: 2,946

    Scope community team

    @forgoodnesssake please notify The Neurological Alliance with your very important observations. The survey happens every two years. It really should encompass every conceivable situation.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • JustPete
    JustPete Community Volunteer Adviser Posts: 65 Connected
    @forgoodnesssake all I can say is "for goodness sake"!!!!!!!!!!!

    I tend to try to offer my experiences to Organisations, Student, Authorities.  However, I get so frustrated when questions and the scope of research leads us down paths that are not necessarily correct or appropriate.  Often it is just due to a lack of real understanding.

    All we can do is keep on trying.  There are some pieces of good work and good practice out there.  Co-production work seems to be a new way of working and it feels like our voices carry a little more weight in these environments.

    Lets not give up attempting to help!!!!!!!!!
    I am a Scope Volunteer.   I have knowledge about life! Additionally, but not limited to: living with a disability, employing personal assistants (requiring 24x7 care), education (having reached PhD level), sexuality (being gay) managing relationships having a disability (tricky), technology and assistive technology (being a geek), sport & leisure (being a Paralympian and on various committees whose purpose is to maximise inclusion at all levels), mental health (both through personal experience and supporting others), Arsenal Football Club (a necessary part of life).  If I can't help, I will endeavour to find somebody who can.

    "You are braver than you believe, stronger than you seem, smarter than you think and loved more than you'll ever know." - Winnie The Pooh

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