Will you join the Neurological Alliance Survey Steering Group & Action Groups?

We are looking for people affected by neurological conditions (adults, children and young people, and carers), representatives from our member organisations, representatives from national neurological alliances in the UK and the Republic of Ireland, health professionals and representatives from the wider voluntary sector to help us shape the next iteration of My Neuro Survey.

There are opportunities to get involved in the Survey Steering Group and Action Groups that will focus on different aspects of the survey.

Apply now or read on to find out more about the roles and what’s involved.

You can also download this poster that contains a summary of information about the roles.

What are the opportunities?

There are two opportunities to help guide the development and rollout of My Neuro Survey in the UK and the Republic of Ireland. This is a patient experience survey run by the Neurological Alliances for adults, children and young people affected by neurological conditions, and their carers. These include:

• A Survey Steering Group, which is a multi-stakeholder group with overall responsibility for overseeing the survey.
• Action groups – these are groups focused on aspects of the survey.

The provisional areas include:

• Clinical Methodology
• Communications and Campaigning
• Equity, Diversity, and Inclusion
• Report Development and Policy Influencing.

What do the roles involve?

What will happen in the survey steering group?

As part of the Steering Group, you will work together to:

• Discuss and approve the aims and objectives of the survey, and support us in meeting budget and timeline constraints 
• Be aware of survey provider Revealing Reality and the Neurological Alliance’s safeguarding policies and approaches to confidentiality, and ensure that project actions align with them
• Promote adherence to the co-produced ways of working and the values of The Neurological Alliance to ensure fairness, transparency, equity, diversity, and inclusion throughout the project 
• Discuss and mitigate project risks and resolve issues, including those related to data protection
• Discuss and approve the survey questions and methodology proposed by an internal action group 
• Co-create the plan for how the survey would be analysed in collaboration with the survey provider
• Support the survey rollout across different regions, and ensure it is equitable, accessible, and inclusive of all people affected by neurological conditions 
• Co-develop accessible, compelling, and impactful ways to share the survey results with the wider neurological community, key influencers, and the media, in collaboration with internal advisory groups.

What will happen in the action groups?

The activities and responsibilities of the action groups will be co-developed in partnership with the Survey Steering Group.

What is the time commitment?

You will need to attend virtual meetings (online) for a total time commitment 2 to 3 hours per month until June 2025. We will work with everyone to find suitable days and times and make adjustments to accommodate individual needs and requirements.

Who are we?

We’re The Neurological Alliance, England’s leading coalition of organisations and professional bodies supporting people with neurological conditions – over 90 organisations working together to ensure that every person affected by a neurological condition can access the right treatment, care and support at the right time.

We work with The Scottish Neurological Alliance, The Wales Neurological Alliance, the Northern Ireland Neurological Charities Alliance, and Neurological Alliance of Ireland to collect, analyse and share the evidence needed to create real change for everyone living with a neurological condition. 

What is My Neuro Survey?

The Neurological Alliance runs the National Neurological Patient Experience Survey (now called ‘My Neuro Survey’) every two years.

My Neuro Survey is the largest patient experience survey of people affected by neurological conditions. It includes adults and children (people under 18) with all kinds of neurological conditions, and carers, and those awaiting diagnosis.

My Neuro Survey is the biggest single source of patient experience data when it comes to commissioning services for people with neurological conditions and lobbying to improve treatment, care, and support for people with neurological conditions.

If you would like to find out more about My Neuro Survey, visit this webpage. You can also contact us on info@neural.org.uk if you would like more information.

How might you benefit from these opportunities?

• Join a community of changemakers
• Connect with like-minded individuals and people affected by neurological conditions
• Hands-on co-production experience of creating a survey
• Support us to amplify the voices of the neurological community and make a difference!
• We will be able to cover expenses and pay certain stakeholders for their involvement at the rate of £25 per hour. We can explore alternatives if you are unable or do not want to be paid. Please note that we can only pay individuals who are not receiving payment from their respective organisation for their time, in line with our Involvement Payment Policy. This will be discussed in further detail with applicants.

How can I apply for the opportunity?

Please fill out this online form by 5pm Wednesday 10th April.

Alternatively, you can send a video or audio file (up to 10 minutes) in response to the questions on the form to survey@neural.org.uk.

Or send an email answering the questions on the form to survey@neural.org.uk. Access a PDF version of the form here.

If you are unable to fill out the form for any reason, please contact us at survey@neural.org.uk for an alternative method of applying for the opportunity.

If more people apply to take part than can reasonably participate in the steering group or action groups, we will look at other ways applicants can help shape the next iteration of My Neuro Survey, and support our campaigning and wider work. Thank you. We will do all we can to support you to get involved.

Which skills and qualities are we looking for?

All stakeholders

Essential:

• Motivated to support us to reach the wider neurological community, including increasing survey uptake from member organisations and diverse underrepresented communities  
• Ability to support us to ensure respondents feel the survey is relevant to them 
• Good communication skills 
• Ability to support us to communicate the survey results in impactful and creative ways
• Understand and committed to the Neurological Alliance and the neurological community as a whole 
• Understand the realities of living with neurological conditions 
• Respectful of people’s ideas and thoughts
• Ability to work well in a team and compromise
• Ability to engage in the Survey Steering Group, including managing the commitment and attending meetings 
• Commitment to equity, fairness, accessibility, and inclusion.

Desirable:

• Have a good understanding of patient experience surveys, particularly for those affected by neurological conditions 
• Innovative 
• Ambitious.

Neurological Alliance Trustees

Essential:

• Awareness of trustee risk appetite for this programme of work 
• Awareness of key strategic considerations for the Neurological Alliance 
• Ability to promote and advocate for the survey at the Board level.

Neurological Alliance member organisation and national alliances

• Prior experience working with people affected by neurological conditions 
• Prior experience advocating for and/or effecting policy change, and influencing care and service improvements for people affected by neurological conditions 
• Communications expertise, including leading impactful campaigns 
• Ability to encourage more Neurological Alliance members to engage in the survey 
• Prior experience and the ability to engage their communities in neurological surveys.

People affected by neurological conditions (adults, children & young people, carers)

Essential

• May have a neurological condition(s) and/or care for people affected by neurological conditions 
• Good knowledge of surveys.

Desirable

• Good understanding of neurological surveys, including how to develop a clear, succinct, and reliable survey 
• Ability to provide suggestions on innovative approaches to reach people affected by neurological conditions 
• Ability to disseminate the survey among their networks 
• Being considerate of the diverse needs of the neurological community – with over 600 conditions, we aim to be inclusive. 

Voluntary sector representation across the UK and the Republic of Ireland for people with various types of neurological conditions

• Prior experience working with people affected by neurological conditions 
• Prior experience advocating for and/or effecting policy change, and influencing care and service improvements for people affected by neurological conditions 
• Communications expertise, including leading impactful campaigns 
• Prior experience and the ability to engage their communities in neurological surveys 
• Representing and able to engage communities that are underrepresented among the Neurological Alliance’s member organisations.

Health professionals

Essential:

• Demonstrable ability to act as a champion who can influence the clinical community and encourage clinic participation 
• Commitment to embedding the experiences and views of people affected by neurological conditions into their services 
• Have experience working with people affected by neurological conditions 
• Experience of planning and delivering services for people affected by neurological conditions 
• Demonstrable commitment to co-production and involvement 
• Experience of rolling out a survey in clinical and community health settings.

Got questions or need support to apply?

If you have any questions about these opportunities or would like any additional support, please contact us at survey@neural.org.uk.

Apply now

Apply now. Please fill out this online form.

If more people apply to take part than can reasonably participate in the steering group or action groups, we will look at other ways applicants can help shape the next iteration of My Neuro Survey, and support our campaigning and wider work. Thank you. We will do all we can to support you to get involved.