What We Do
We are Neuro Key. In the UK, 2% of people live with a neurological condition and 1:7 people have ‘caring’ responsibilities. Working with partners to deliver information, events, opportunity and choice, Neuro Key serves over 35,000 people living with a neurological condition in the region. Health and Social care services are often fragmented and disconnected and there are failures in appropriate signposting for people to access services that could help them. The impact of this on the lives of individuals, their families, carers, friends and employers understanding is real and damaging.
To fulfil our aim of improving the lives of people living with a neurological condition we operate a number of projects and services in the region.
Please take a look at our 2014 Prospectus to find out more about us.
Information & Resources
We provide online and offline materials for people living with a condition, caregivers and health and social care professionals. Please see our Resources section for more information on The Directory of Services or Neurological Information Passport.
Listening Service
People living with neurological conditions are our priority. We are available by telephone, email or by appointment to talk through concerns, difficulties accessing services or meet information needs.
Peer Support
We have expertise with 31 neurological conditions, offering unique multi-neuro peer support through face-to-face groups and social media, regardless of diagnosis. To us, it is the value of their lived experience that makes all the difference. People discuss, review and contribute, it is their voice, we just turn up the volume.
Get in touch.
Education
1. We provide unique community placements in partnership with Durham University, Queen’s Campus, Stockton-On-Tees to enable first year medical students to have:
- Awareness of what neurological Charities offer and how they operate
- Insight into the common threads between neurological conditions
- Information to facilitate good management of people with neurological conditions
2. We co-ordinate and host a seminar to first year medical students at Durham University, delivered by people living with different neurological conditions.
3. We work with Teesside University to research service-user perspectives of living with a neurological condition in the North East of England. We also advise students on research topics and enable service-users and caregivers to participate in research.
Find out more about the benefits of our education programme.
“Open Door” Learning Tools
Our ‘Open Door’ series of learning tools are based on the lived experiences of people with neurological conditions.
The series is collectively created to share our expertise and ultimately, benefit the whole neuro community. However, we need to sustain this Charity. If this resource has been useful for you, we would appreciate a donation to help keep the work going.
Self-Management Support
In partnership with people with long-term conditions and psychologists at Teesside University, we have created a new self-management tool, MyLifeTool, to support people with any long-term condition in their self-management journey.
MyLifeTool recognises how creative activity can support people to reflect on their self-management journey and we have developed a creative self-management group programme and activity sheets which can be used alongside MyLifeTool.
We have also developed a self-management programme to accompany MyLifeTool. The MyCreativeLife programme uses creative activities to support people to reflect on their self-management experience. Practitioners and organisations can use our programme handbook to deliver the programme to anyone living with long-term conditions.
Visit mylifetool.co.uk for more information and resources.
You can find our more about our 2022-2023 regional evaluation of MyLifeTool in our latest report.
Our response to Covid-19
We sifted through guidelines and information on Covid-19 support systems to ensure people had what they needed. We are constantly gathering examples of where the system is failing people living with neurological disabilities and placing their carer’s at risk, to report to Cabinet Office and DEFRA via the regional stakeholder disability network.
We also worked with people living with long-covid to adapt our self-management tool, MyLifeTool, for people living with long-covid.
Advice
Welfare reform has had a big impact on the lives of people with neurological conditions. Staff and Trustees have undertaken training to ensure people can access relevant information about what the changes mean for them and guide decision-making.
Networks
We are affiliated to and work collaboratively with the national Neurological Alliance and other Regional Neurological Alliances to reflect national issues at a local level and enable a strong, collective service-user voice.
Information Days
We provide multi-agency information events and attend corporate, charity and NHS events to foster a ‘learning and sharing’ environment as a positive approach to resolving difficulties.
Neuro Bulletin
We disseminate a regular Neuro Bulletin to capture new developments, update our networks and partners with local and national policy or service changes that may affect service users.
Conferences
Since 2006, the Charity has delivered bi-annual conferences to enable service-users and caregivers to engage as equal partners to improve the value of ‘nothing about me, without me’ and improve Health and Social Care personnel knowledge about neurological conditions. Feedback from conference informs our work priorities the following year.
“Mind the Gap: Integrative approaches to help people manage long-term conditions” was our latest conference, in partnership with Teesside University. It took place on 25th October 2023 at Hardwick Hall Hotel, Sedgefield and brought together people living with a range of long-term conditions, practitioners, academics and public sector organisations to discuss ways to enhance person-centred, integrative care for people living with long-term conditions.
Partners
At Neuro Key we sustain reciprocal and referring interaction with 82 Voluntary, Independent and Statutory sector organisations and contribute as a core member of 10 Networks and Forums to dispel myths and reduce communication barriers between agencies across the region. We campaign for better services for people with neurological conditions and highlight neurological need.
Neuro Key has pledged to work towards meeting the Tees Valley Volunteering Charter Standard.