Tracking the 12 million
Why Britons with neuro conditions are needed now more than ever in the fight for better healthcare.
You would think members of a UK community with a population bigger than the whole of Greater London would be playing a huge part in changing healthcare for the better.
Well, they can if they sign up to become a Neuro Changemaker!
Each of the 12 million people currently living with any of the 600-plus types of neurological conditions known so far [1] is being urged to join the project run by national charity, the Brain and Spine Foundation.
And there is no better time to make their voices heard than now, in 2022, a landmark year in the history of neurorehabilitation in the UK.
Only recently, the Government agreed to the creation of the first-ever national acquired brain injury (ABI) strategy to put in place effective and consistent care for all ABI survivors. [2]
It brings together experts from a wide range of private, public and charity sectors involved with the treatment, care and rehabilitation of ABI patients.
And one of their first jobs is gathering evidence of the lived experience of people with ABI-related neurological conditions.
To stress, however, the Neuro Changemaker project is open to all neuro conditions.
Long term neurological conditions carry a significant burden to the individual, their families and carers. 
National Health Service (NHS) [1]
All change!
The ultimate goal of the Brain and Spine Foundation and its growing number of Neuro Changemakers is to ‘dramatically improve the quality of life for people affected by neurological conditions’.
And these are the tactics the Neuro Changemakers are taking to hit that goal:
- Setting up or joining online self-help forums for shared support and learning
- Setting up or joining local peer support groups
- Sharing their stories publicly to raise awareness of life with a neurological condition
- Sharing their stories to let others know they are not alone
- Donating or fund-raising for the charity
- Becoming Brain and Spine Foundation Ambassadors to help drive positive change
- Lobbying their local MP, council or NHS trust
- Taking part in the charity’s social research project, NeuroLife Now
Everything we do is based on listening to you.
Brain and Spine Foundation.
Take aim!
Neuro Changemakers work across a wide field, with the ultimate goal of ‘dramatically’ improving treatment and care for people with neurological conditions.
But within that field, there are four levels to tackle, each with a different aim.
And only when all the aims are met will the ultimate goal be reached.
Here are the levels and aims in more detail:
Level: Individual
Aim: for the Neuro Changemaker to ‘dramatically’ improve their quality of life.
But what counts as ‘dramatically’?
Well, the charity measures that in outcomes. And, in this instance, it is the outcomes for the Neuro Changemakers themselves that matter.
The aim is that they will feel:
- more self-confident and self-worth
- more hopeful and optimistic
- that their daily reality and lived experience are being recognized
- that the learning, insight and expertise they have gained from their lived experience is being used and valued
Level: Community
Aim: Enable self-help and peer support networks
To hit the mark here, the Neuro Changemaker will:
- Feel part of a community that understands and respects them
- Reduce loneliness and isolation
- Understand better how to access local public services
- Feel that their experiences, needs and choices are valid and acknowledged
Level: Health and social care system
Aim: Dramatically improve treatment and care
Neuro Changemakers will know when this aim has been achieved when:
- There are specialist neurology hubs in all major UK hospitals
- The community campaign is at full strength
- Waiting times become a health and care performance priority
- Health and social care service delivery is fully person-centred
Level: Society
Aim: Neuro is recognised as a serious public health issue
When this aim is a reality, Neuro Changemakers will be able to confirm that:
- Their voice is listened to, and they have power.
- There is less stigma being reported by people with neurological conditions.
- Employers and public places are providing reasonable solutions to the needs of people affected by neurological conditions.
- By 2024, a National Plan for Neurology will be in place in the UK.
Join the community. Connect with people. Fight for change.
Brain and Spine Foundation. [5]
Sign up!
Further information about becoming a Neuro Changemaker with the Brain and Spine Foundation or supporting the charity in other ways can be found here: Brain and Spine Foundation: get involved
References
1. NHS England: Long-term conditions, neurological
2. New lived experience evidence as national ABI strategy welcomed
3. NeuroLife Now: