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

Richard_Scope
Richard_Scope Posts: 3,615 Scope online 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 Community member Posts: 498 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: 3,615 Scope online 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, Scope Member Posts: 303 Pioneering
    @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 Community Volunteer Adviser with knowledge of "life"!  Lived experience including employing personal assistants, being gay, sport & leisure inclusion & participation, mental health issues.  

    What is the bravest thing you've ever said? asked the boy. 'Help,' said the horse.  'Asking for help isn't giving up,' said the horse. 'It's refusing to give up.”
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    Co-production is really important for ensuring everyone's voices are heard indeed @JustPete :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • ernestinadimarco
    ernestinadimarco Community member Posts: 7 Listener
    NLP first came about when these two gentlemen, Dr. Richard Bandler and Dr. John Grinder, decided to model people who were excellent in creating change in others. More specifically, they wanted to model linguistic experts who could change people through speaking, through their words and therapies

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