21/02/2025
Newtown Community Resource Centre
123 Durham Road
Stockton-On-Tees
TS19 0DE
T: 01642 641825
E: [email protected]
W: www.neurokey.co.uk
Registered Charity No: 1119043
IMMEDIATE RELEASE 20.02.25
Dear Editor,
Developed a network from the ground floor up
In 2025, we celebrate 20 years of delivering advocacy, information and education for people
living with any neurological condition, injury, impairment, disability or neurodiversity.
Joanne Cole, with 3 national awards for services to the community and an appointed member
of the NE Regional Stakeholder Network for Disability says,
‘Considering 1:6 people in the North East have a neurological condition, I am
increasingly concerned about the level of poor understanding of neurological need in
NHS, Mental and Public Health administrative systems, the word 'neurology' did not
feature in Lord Darzi's state of the NHS report in 2024’.
Neuro Key is a recognised Disabled People’s Organisation with expertise in 33 neurological
disabilities. Led by people living with or carers of neuro-disabled people, we have created the
only neurodiverse adult peer group in Middlesbrough plus the only pan-neuro peer group in
Richmond, North Yorkshire. We support community members from the Pain Friendship group
in Thornaby, Headway Teesside and the Polio Survivors network. The Charity has built a
robust, pan-neuro network from the ground up since 2005. Our objective is to reduce the
negative life impact of being diagnosed with or managing a deteriorating neurological
condition. Lived experience from the neurological community has delivered our work and
impact for two decades.
Publication of our co-authored paper with Dr Stephanie Kilinç at Teesside University, ‘Finding
Meaning and Purpose: A Framework for the self-management of Neurological Conditions’
(Kilinc, Erdem, Healey and Cole) in Disability and Rehabilitation Journal – May 2021 led to
developing a long-term condition, self-management tool to underpin our drive for pan-neuro
conditions to be included on the NHS long-term condition strategic agenda –
www.mylifetool.co.uk.
Our collaboration created Peer Research Assistants, people with lived experience of neuro-
disability to guide evaluation of MyLife Tool for the National Institute for Health Research and
adaptations for Long Covid and My Creative Life. In 2024, Peer Research Assistants designed a
unique Peer Researcher Backpack as a resource for people to engage in research as partners
and contribute their lived experiences.
Newtown Community Resource Centre
123 Durham Road
Stockton-On-Tees
TS19 0DE
T: 01642 641825
E: [email protected]
W: www.neurokey.co.uk
Registered Charity No: 1119043
Joanne added,
‘I designed our ‘Open Door’ narratives of lived experience of neurological conditions as
learning tools to improve professional knowledge with learning outcomes contributed
by people living with neurological conditions. Our Iceberg infographic is widely used
across the Tees Virtual School for Fostering and Adoption, Education, Mental Health and
Social Care and published on the Neurodivergence in Criminal Justice Network (NICJN)
out of Bristol University to explain the presentations of the full range of
neurodevelopmental conditions’.
For a decade, we have worked collaboratively to include the full range of neurodevelopmental
conditions to reduce the isolation-by-diagnosis for young people. We gathered feedback from
parent, kinship carers and neurodiverse adults from across Tees Valley to design a unique job
role, a Specialist Community Navigator for neuro-diverse young people.
We are now delivering skilled support and advocacy for neurodiverse young people in Redcar
and aim to roll out this essential resource across the Tees Valley.
Yours faithfully
Joanne Cole
Head of Operations
Notes to editor
Formerly TVDNY Neurological Alliance, Neuro Key is now the name of the Charity - reg
1119043.
Contact details below.
Are you struggling to find information following a recent diagnosis for you or a relative? Have you faced challenging situations returning to work following a diagnosis or event? Are you a caregiver for someone with a neurological condition? We can help. We are Neuro Key. We work across the Tees Val...
