£26,500 - £27,200 per year
Permanent, Part-time, 37.5 hours per week (or job-share), Full-time
Job description

Pathfinders Neuromuscular Alliance is a user-led charity supporting teenagers and adults with muscle-weakening conditions. We are currently recruiting a programme manager to take charge of an exciting new Lottery-funded project to develop skills, knowledge and confidence of young people with muscle-weakening conditions, and engage them in campaigning work to tackle the social barriers they face.


Please note although most of this work will be carried out remotely, the successful candidate will be required to travel to attend outreach meetings and to run events for young people.

Pathfinders aims to enable teenagers and adults with muscle-weakening conditions to access the support they need to maintain good health, become independent, access social and work opportunities and contribute to their communities. We want to ensure standards of care and access to services and information is consistent across the country. We want to develop the skills and confidence of young people with muscle-weakening conditions and empower them to take charge of their own health and to build a stronger community to get better services and support. 

We are currently recruiting for a confident, experienced, and engaging programme manager to take charge of an exciting new Lottery-funded project to develop the skills, knowledge and confidence of young people with muscle-weakening conditions, and engage them in campaigning work to tackle the social barriers they face.

With this project, Pathfinders aims to support people with muscle-weakening conditions to:

  • Advocate for themselves in order to access the right social care, housing, equipment and other support that meets their needs, to access employment or volunteering, develop relationships and interact with the community in the ways they choose.

  • Understand how to carry out activities they will need to do as disabled adults, such as managing carers, researching accessibility, arranging support with organisations, talking about their needs with professionals in finding employment.

  • Have greater knowledge of barriers they may experience and how their health may progress, and how they can manage these issues in order to focus on what’s important to them.

  • Know how, when and where they can access support when they need it. 

  • Become more independent in the sense of directing their own care and support, as well as making the important decisions about where they live, who they live with and what they do.

  • Have greater confidence to talk about themselves and their needs, and to believe that they are an integral part of society, based on the rights to equality.

  • Identify that they have the power to make a difference to society, by supporting them to identify issues and work with organisations to address these.

  • Understand the needs of others in the community, and how to work together and involve everyone in events and awareness campaigns.

The project will involve running an annual 3-day residential development camp for young people with muscle weakening conditions, followed by a programme of online training and development, campaigning work and 4 regional events. 

We are particularly interested in employing people who also have lived experience of a muscle-weakening condition, especially adults with conditions themselves, but also carers, siblings, parents etc. However, this is not an essential requirement for the role.

It is essential that all the people that we employ embody the values of Pathfinders, enabling and encouraging independence, being led by the people we support, rooted in the social model of disability and valuing the importance of sharing lived experience.

Roles and main responsibilities of the role

  • Overall management of the project and progress of milestones/deliverables

  • Line-managing the project assistant 

  • Managing project volunteers 

  • Overseeing the project budget and monitoring spend 

  • Liaising with colleges and hospices to set up events and bring in referrals

  • Recruiting and managing expert speakers for the online and in-person events 

  • Recruiting project participants and holding introductory and review meetings 

  • Liaising with project participants and parents to support them to continue to be engaged, providing information and guidance on progressing their aspirations, and where necessary referring to advocacy support within Pathfinders 

  • Recruiting and managing the steering group for the project 

  • In partnership with the steering group:

    • Designing event content and programmes 

    • Designing evaluation materials

    • Designing project promotion and publicity 

    • Identifying expert speakers and professionals to be involved 

    • Reviewing evaluation and feedback and tweaking the programmes  

    • Preparing and delivering online and in-person events 

  • Supporting project participants to prepare and deliver regional workshops

  • Liaising with the venues and other organisations and professionals involved in the project 

  • Moderating social media and whatsapp groups for the project 

  • Supporting the project participants to carry out social advocacy activity - providing guidance and overseeing the delivery of this work (monthly meetings)

  • Liaising with organisations involved in social advocacy work (1-2 meetings per year) 

  • Creating promotional materials for the project

  • Promoting and showcasing the project in internal and external meetings (8 meetings per year)

  • Reporting on project milestones

  • Carrying out risk assessments and ensuring appropriate policies are implemented effectively

Person specification

In your application you will need to explain how you meet the following requirements:

Experience and Knowledge

At least 1 year of experience in roles involving project management


Experience of working with disabled young people 16-30 or students with SEN


Experience of networking and building relationships with organisations and consultants


Experience of using a range of social media platforms to engage audiences


Experience of running information, training or development events


Experience of organising and managing professional campaigns


Experience of carrying out risk assessments and operating within a strict safeguarding environment


Experience designing and delivering training or educational material


Experience of working in a residential environment with young disabled people


Lived experience of a muscle-weakening condition and the barriers to social inclusion and independence


Personal attributes and skills


Excellent organisational skills and confidence managing complex tasks under pressure


Excellent IT skills including use of Microsoft Office, databases, cloud storage and other online software.


Excellent people skills and a strong commitment to treating people with respect and dignity and upholding principles of equality and diversity


Excellent communication skills in person and in writing, with a confident and pleasant manner and professional writing style


Ability to interact with stakeholders at a range of levels


Ability to communicate effectively and professionally to manage conflicts and communicate problems to team members


Willingness to be flexible and open to new ideas


Application Instructions

In your CV & cover letter please include
1. Your employment and educational history.
2. Your contact details including email
3. Description of the skills & experience you possess that you could bring to the post? Please explain how your skills and experience meet the essential and/or desirable requirements of this job as given in the job description.

Refreshed on: 13 October 2021
Closed date: 25 October 2021
Tags: Campaigning, Project Management

The client requests no contact from agencies or media sales.