Lived experience jobs

Working Well Trust is a mental health and employment charity in London. All of our projects share the aim of improving the lives of people with mental health support needs, learning disabilities, neurodiversity and/or complex issues through training and employment. 

We are recruiting for Peer Support Worker in Kingston upon Thames.

We are looking for an enthusiastic, flexible person with lived experience of autism who is committed to supporting autistic people to work towards their individual goals. Lived experience refers to the first-hand involvement or direct experiences and choices of a given person, and the knowledge that they gain from it, as opposed to the knowledge a given person gains from second-hand source. 

Goals you may support clients to work on include: 

· Taking more control of their lives through gaining a greater understanding of their own wellbeing 

· Reducing feelings of isolation through building connections in the local community 

· Gaining confidence and an improved sense of wellbeing

You will use your own direct lived experience of autism, to work together with people to identify their wellbeing goals and find the right resources and support for their needs. You will have excellent interpersonal skills and be committed to using a strength based and client led approach. 

Experience of peer support is not essential; it is more important that you share our commitment to supporting people to achieve their personal and wellbeing goals. Peer support training will be provided. 

This is a hybrid role involving both working from home and working in the community.

Please click apply to send your CV and a cover letter. Please add a cover letter to the end of your CV when uploading. Applications without a cover form will not be considered. 

Candidates need to clearly outline how they meet the person specification points in their personal statement. 

Staff benefits include an employer contribution to a personal or workplace pension equivalent to 6% of gross salary. 25 days annual leave per annum pro rata plus statutory holiday. 

Working Well Trust is an equal opportunities and confident about disabilities employer (two ticks). We welcome applicants of all backgrounds, cultures, genders, ethnicities, disability statuses and sexual orientations. We are happy to discuss any workplace adjustments individuals may require in the recruitment process, on commencement, or once in post. Special requirements for the interview process can be submitted in the cover form. 

Closing date: Friday 9th January (9am). Please note, Interviews will be arranged throughout the application window. Therefore, it is important to get your application in as soon as possible. We may close this vacancy early.

Purpose of Post: The Events Coordinator will help to plan, promote and deliver a diverse programme of online and in-person events that reflect the organisation’s mission to support, empower and amplify the voices of people with lived experience of mental illness. These will include outreach sessions, campaigning events, open forums, creative workshops, community engagement activities, fundraising events, awareness days and partnership events.

The post-holder will ensure all events are accessible, inclusive, trauma-informed and well-organised, working closely with the Engagement & Campaigns Manager, project teams, volunteers and external partners.

Given the collaborative and engagement-focused nature of this role, and its direct delivery responsibilities, regular face-to-face working is required, with the post-holder based primarily in the office and attending events and community activities as needed.

Key Duties and Responsibilities

Planning and Coordination

• Develop and maintain an annual events calendar covering outreach, campaigns, creative sessions, open forums, workshops and fundraising (both online and in-person).
• Lead on the end-to-end planning of online and in-person events including aims, audience, format, accessibility needs, timelines, budgets, venues, equipment and staffing.
• Prepare event plans, schedules, risk assessments and checklists to ensure smooth delivery.
• Liaise with venues, suppliers and partners to negotiate costs (ensuring value for money), confirm bookings and arrange logistics.

 Promotion and Communications

• Produce accessible event information and promotional materials, working with colleagues to ensure inclusive language, imagery and formats.
• Use social media, website updates, e-newsletters and community networks to publicise events.
• Maintain event booking systems (e.g. Eventbrite, online forms), manage attendee lists and respond promptly to enquiries.

Event Delivery

• Act as point of contact on the day of events, ensuring smooth set-up, running and pack-down (including seating, signage, technology and accessibility adjustments).

• Brief staff, volunteers and facilitators on their roles and responsibilities before and during events, to ensure clarity of roles.

• Greet attendees, speakers and partners; creating a warm, inclusive and trauma-sensitive environment.
• Monitor timing, technical requirements (e.g. microphones, presentations, online platforms if appropriate) and respond to any issues that arise calmly and adapt plans where needed.

Community Engagement and Stakeholder Support

• Build strong relationships with partner organisations, community groups, local charities, the council and health & social care stakeholders.
• Represent the organisation professionally at meetings, outreach events and networking opportunities as necessary.
• Support delivery of awareness campaigns, public consultations and community engagement activity.

Volunteer Coordination

• Support the recruitment, induction, supervision and recognition of event volunteers.
• Provide clear instructions and create a positive, supportive environment for volunteers.

Monitoring, Evaluation and Reporting

• Collect and analyse event data, including attendance, demographics, costs, outcomes and feedback (e.g. surveys, informal feedback, Mentimeter)
• Produce reports and summaries to evidence impact, support funder reporting and inform future planning.

Finance and Administration

• Work within agreed event budgets, tracking expenditure and income, and seeking value for money.
• Process invoices, petty cash and expenses in line with Hear Us, financial procedures.
• Maintain an organised system for event documentation (e.g. booking forms, contracts, attendance, risk assessments, evaluations).

Safeguarding, EDI and Health & Safety

• Ensure all events comply with safeguarding, data protection, confidentiality and health & safety policies.
• Ensure events are inclusive of people from diverse backgrounds and are accessible to people with a range of mental health needs and disabilities.
• Report safeguarding concerns promptly following internal procedures.

Other Duties

• Attend staff meetings, supervision, training and development opportunities.
• Contribute to a positive, collaborative and learning culture.
• Carry out any other reasonable duties within the scope and spirit of the role as requested by your line manager.

It is the nature of the work that tasks and responsibilities are in many circumstances unpredictable and varied. All employees are expected to work in a flexible way, as required by Hear Us. Some meetings and other events may be held out of normal office hours and could involve travel away from the local area.

The above items outline the main duties and responsibilities of the post and are designed to give an accurate flavour of the nature and scope of this post. However, they do not represent an inclusive list of all the duties required

To develop policy goals and recommendations in line with Women for Refugee Women’s (WRW) overarching campaigns strategy to improve the lives of women seeking asylum in the UK; to develop and deliver policy interventions such as policy briefings, evidence for parliamentary committees, responses to inquiries and consultations; to plan and carry out research projects for influencing purposes, ensuring that these are informed by and co-delivered with women in WRW’s network.

We are part of the Experts by Experience Employment Initiative. The network supports inclusive recruitment of people with lived experience of the UK asylum or immigration system. If this is your experience, you can find useful resources on the Experts by Experience Employment Initiative website.

To lead the development and delivery of Women for Refugee Women’s (WRW) campaigns and communications strategy, ensuring compelling public engagement that amplifies the voices of refugee and asylum-seeking women, strengthens WRW’s profile, and mobilises supporters to take action. This role combines strategic communications and media liaison with impactful campaigning to influence public opinion and drive systemic change.

We are part of the Experts by Experience Employment Initiative. The network supports inclusive recruitment of people with lived experience of the UK asylum or immigration system. If this is your experience, you can find useful resources on the Experts by Experience Employment Initiative website.

Are you passionate about supporting young asylum-seekers and refugees to make change happen? Do you understand campaigning and how to achieve change in the British political system? You could be our new Campaigning Youthworker! 

About Young Roots 

At Young Roots, we want to see a compassionate and welcoming society for young refugees and asylum seekers in the UK. We work alongside young people seeking safety in the UK, building trusted relationships, providing practical and emotional support and promoting young people’s rights and power.  

About the role 

The Campaigning Youth Worker (CPW) will work with young people who are seeking asylum or who are refugees in London to support them to seek change to laws and policies on the issues that matter to them. This role will be located in Croydon and King’s Cross, with regular attendance at our service delivery venues across London as required, including one evening activity per week. 

The role will involve building relationships with young people who attend Young Roots activities and through outreach, having ongoing conversations about the issues that young people say matter to them, working with young people to understand how change to laws and policies happens and supporting young people to take campaigning action to achieve that change.

Please see the job description and person specification for full details. 

Young Roots and recruitment 

Young Roots recognises the positive value of diversity, promotes equity and challenges discrimination. We welcome and encourage applications from people of all backgrounds, particularly those who can face disadvantage in employment, such as people from Black, Asian and minority ethnic backgrounds, LGBTQ+ individuals and people with disabilities. As an organisation that supports refugees, asylum seekers and migrants, we particularly welcome applications from people within these communities. We offer a guaranteed interview for those with lived experience of the asylum system and those with disabilities, where they meet the essential elements of the person specification.

If aspects of the application process create barriers to you applying and you’d like any adjustment to the process or you’d like an informal discussion or advice on your application, please get in touch. We would also like to alert you to the existence of organisations which supporting people from under-represented groups to access employment, who can advise you on applying for this role. For example, Scope, Young Women’s Trust and Experts by Experience. 

Young Roots is committed to safeguarding and promoting the welfare of children and young people and expects all staff to share this commitment. We take this duty very seriously. 

Our work is underpinned by policies and procedures which promote safe working practices. We have a framework of training and supervision which everyone is expected to comply with and systems for monitoring, quality assurance and gaining service user feedback. On joining you will be expected to be part of this approach to safeguard our service users. 

All posts are subject to a safer recruitment process which includes vetting checks such as enhanced criminal records and barring, scrutiny of employment history, references and other checks. 

To apply 

To apply, please submit your CV alongside a personal statement by the closing date outlining how you would be a great fit for the role. 

Your personal statement should be no more than 800 words, answering the following questions: 

1. What is your motivation for working with Young Roots? 

2. What is your motivation for applying for this role specifically? 

3. What skills and experience would you bring that will enable you to be successful in this role?Please ensure you refer to the essential criteria on the person specification and provide examples to demonstrate how and where you meet the criteria. Your skills and experience could be gained through work, community involvement, or personal and family experiences. 

Please submit your application via Charity Jobs. 

No agencies, please. 

Closing date: 10am on Monday 5 January 2026 

Interview date: 19 or 20 January (you will be able to indicate a preference if you are shortlisted). Successful applicants will then have a second interview round - a young person panel on the evening of Thursday 22 January at our Brent project. 

Are you organised, proactive, and enjoy being a reliable support to a busy team?

Join NASS as our Administrative Assistant and provide essential administrative support that helps our team work towards better diagnosis and care for people living with axial SpA - an invisible, often misdiagnosed inflammatory condition affecting the spine.

WHAT MAKES THIS ROLE SPECIAL

This is an exciting time to join our small but dedicated team as we approach our 50th anniversary in 2026. We're passionate about transforming lives for people with axial SpA, and this varied role provides essential administrative support that helps us deliver on our mission. The role is 21 hours per week with flexible working arrangements across the week to suit your needs, with at least one day par week in our London office. We need someone who enjoys variety, is comfortable working independently, and takes satisfaction in contributing to the team's success.

WHAT YOU'LL DO

You'll provide varied administrative support including managing correspondence, processing post, sending membership materials, and helping with event administration. You'll maintain accurate records by entering data into Salesforce- our customer database, checking reports match, and organising documentation. You'll also help keep the office running smoothly by liaising with suppliers and assisting with health & safety compliance.

WHO WE'RE LOOKING FOR

You'll have experience in general administrative roles with strong organisational skills and excellent attention to detail. You'll be proficient in Microsoft Office (particularly Excel), reliable, proactive, and able to work independently whilst being a supportive team player. Experience with Salesforce is desirable but not essential.

WHY CHOOSE NASS

NASS is the only UK charity dedicated to axial SpA. Recently shortlisted for Medium Charity of the Year, we campaign for early diagnosis, work with the NHS, and support thousands across the UK.

Benefits: Competitive salary, flexible working, 10% pension contribution, 15 days annual leave, plus bank holidays and additional leave over Christmas, hybrid working, professional development, employee assistance programme, and more.

Our culture: We truly value our people. You'll become part of a dedicated team doing meaningful work that directly impacts the lives of people living with axial SpA. This is a role where you will be supported to succeed and genuinely appreciated for your contributions.

Commitment to equality, diversity & inclusion: NASS is proud to welcome everyone. We aim for a truly inclusive culture with talented, diverse teams that represent a variety of backgrounds, perspectives, and skills. We celebrate difference and individuality and encourage everyone to join us and be their whole selves always.

We particularly encourage applications from individuals with lived experience of axial SpA and from underrepresented groups in the charity sector.

HOW TO APPLY

To apply, please submit:

• Your CV highlighting relevant experience
• A one page covering letter explaining why you're interested in this role and how your skills and experience match our requirements

Application Deadline: 5pm on 7 January 2026
Interviews: Week of 12-16 January 2026 (in person at our London office)

CONTACT INFORMATION

For informal enquiries about this role, please contact Justyna Potiopa, Head of Finance and Administration.

NASS is an equal opportunities employer. This appointment is subject to a 6-month probation period and receipt of two satisfactory references.

Ygam is seeking panel members to join our Lived Experience Advisory Panel. We are looking for individuals with either direct or indirect experiences of gambling harms to provide the organisation with an increased knowledge on the issues that children and young people face in today’s society.

We are particularly keen to hear from individuals who can bring a range of skills, knowledge and experience to the panel, including the ability to communicate clearly, reflect thoughtfully, and contribute respectfully to group discussions. Experience of engaging with education, safeguarding, treatment, peer support, research or policy is valuable, as is an understanding of the wider impacts of gambling harms on young people, families and communities. Above all, we are looking for people who are motivated to use their experience to help shape meaningful change for children and young people.

Role Requirements

Duties will include but not be limited to:

· Contributing to panel discussions and activities

· Sharing knowledge and areas of expertise

· Keeping up-to-date with current developments in the risks and emerging themes surrounding young people’s exposure and experiences with gambling.

· Submitting expenses

· Reading through minutes

· Completing any relevant actions pre and/or post meeting

· Declaring conflicts of interest whilst participating on the advisory panel

Person Specification 

Essential

· Demonstrable experience and knowledge in the fields of education, safeguarding and lived experience

· Understanding of issues related to gaming and gambling harms among children and young people

· Excellent communication skills

· Ability to work collaboratively with a diverse group of stakeholders

· Passionate about safeguarding children and young people from gaming and gambling harms

· Ability to commit time to attend regular meetings and contribute to the panel

· Open-minded and respectful of different perspectives and experiences

 

Desirable

· Previous experience serving on advisory panels or boards

· Knowledge of the charity sector

Project Officer

• Are you passionate about empowering people with lived experience of mental health or addiction challenges?

• Do you want to play a vital role in shaping services across Hertfordshire and ensuring every voice is heard?

As a Project Officer at Viewpoint, you’ll help drive meaningful change by co-creating projects and supporting individuals on their recovery journeys. This is an exciting opportunity to join a dynamic, values-driven organisation where your work will directly influence service development, reduce inequalities, and improve wellbeing for people across the county.

Hours and salary
22 hours per week, WTE Salary £25,974

Predominantly based in Viewpoint's office
Weltech Business Centre, Ridgeway, Welwyn Garden City, AL7 2AA with expected travel around Hertfordshire.
Hybrid working can be discussed at interview. 
Access to your own vehicle is desirable.

Pension
Following a three-month period of employment, Viewpoint will contribute a sum equal to 5% of your annual salary to a pension provided that you contribute at least 3% of your annual salary to the pension scheme.

Annual leave
Will commence following six months probationary period and will rise to 25 days plus 8 Bank holidays.

Other benefits
Training, Development and Supervision

Length of contract
Subject to funding

Overview of the role

The Project Officer will work with the Viewpoint team, pool of lived experience facilitators and local communities to co-develop and deliver projects that forward mental health recovery in the wider community.

The postholder will enable the participation of people experiencing mental health and/or addiction challenges in all aspects of the planning, delivery, and monitoring of services delivered and to ensure they are provided with the relevant training, support and resources to participate effectively.

The post-holder will work with individuals from all communities to develop new and innovative ways to reach harder-to-reach people. For example, people from travelling communities and farming communities. This role will further the reach of Viewpoint as an organisation to involve diverse communities and ensure their voices are heard in internal and external projects.

The monitoring, evaluation and learning that the postholder collects will be essential for the development of the organisational strategy. The strategy is developed with Viewpoint’s team and pool of experienced facilitators so that our service delivery to those with mental health and substance use challenges can be continually improved.

Find the full job specification on our website.x

Location: HMP New Hall
Department: Prison delivery
Salary: £16,964 per annum
Hours: 21 hours (3 days a week)
Contract Type: Fixed Term Contract
 
Do you want to join an organisation committed to addressing illiteracy amongst people in prison?
 
Shannon Trust are delighted to be working with His Majesty’s Prison & Probation Service (HMPPS) and G4S to provide peer-led literacy and numeracy programmes across a number of prisons. We now have the opportunity to provide a service at HMP New Hall. Working closely with the prison and their staff, people in prison, Shannon Trust Team Members, this is an exciting role leading on the delivery and development of creative and exciting literacy initiatives and an ambitious Reading Strategy at HMP New Hall, maximising opportunities for people in prison to learn to read.
 
Ideally you will have some experience of prison settings underpinned by the ability to build relationships and personal qualities that include resilience, determination and a problem-solving approach.
 
This role will be prison-based. Employee benefits include a company contribution to pension scheme of up to 5%, 30 days holiday (when full time) plus bank holidays, life insurance, paid volunteering days, discounts via Reward Gateway and an Employee Assistance Programme. The biggest benefit though is our culture – our people really want to work for the organisation.
 
?We welcome job applications from people with lived experience of the criminal justice system and do not routinely ask for details of any criminal convictions. These roles do require prison security clearance, so we will need to ask for details of any relevant criminal convictions before an offer of employment is finalised.
 
This is a fixed term contract until 5th June 2026
Interviews are planned for the 22nd January 2026.
 
Benefits: Standard Shannon Trust: Employee benefits include a company contribution to pension scheme of up to 5%, 30 days holiday plus bank holidays, life insurance, paid volunteering days, discounts via Reward Gateway and an Employee Assistance Programme.
 
REF-225 665

Location: HMP Brixton
Department: Prison delivery
Salary: £24,219
Hours: 28 hours
Contract Type: Fixed Term Contract
 
Do you want to join an organisation committed to addressing low literacy levels amongst people in prison?
 
Shannon Trust are delighted to be working with His Majesty’s Prison & Probation Service (HMPPS) to provide peer-led learning programmes at HMP Brixton. Working closely with the prison and their staff, people in prison, Shannon Trust volunteers and mentors, this post will lead the delivery and development of our prison-based reading and numeracy programme, maximising opportunities for people in prison to learn to read.
 
Ideally you will have some experience of prison settings underpinned by the ability to build relationships and personal qualities that include resilience, determination and a problem-solving approach.
 
This role is a fixed-term role until 2nd June 2026, with the opportunity to be made permanent subject to contract award.
 
The role will be prison-based. Employee benefits include a company contribution to pension scheme of up to 5%, 30 days holiday plus bank holidays, life insurance, paid volunteering days, discounts via Reward Gateway and an Employee Assistance Programme. The biggest benefit though is our culture – our people really want to work for the organisation.
 
?We welcome job applications from people with lived experience of the criminal justice system and do not routinely ask for details of any criminal convictions. These roles do require prison security clearance, so we will need to ask for details of any relevant criminal convictions before an offer of employment is finalised.
 
?Interviews are planned for 14th January 2026
 
Benefits: Standard Shannon Trust: Employee benefits include a company contribution to pension scheme of up to 5%, 30 days holiday plus bank holidays, life insurance, paid volunteering days, discounts via Reward Gateway and an Employee Assistance Programme.
 
REF-225 666

The Survivor Engagement and Activism Coordinator leads the Helen Bamber Foundation’s work to ensure that survivors of trafficking, torture, and human rights abuses are meaningfully involved in shaping services, influencing policy, and driving social change. Working within the Community and Integration team, the post holder safeguards and supports clients as they participate in advocacy, leadership, and organisational development projects.

They oversee key survivor engagement programmes, including the Ambassadors for Change advocacy and leadership programme, the Client Voices Forum, the Board Advisers, and the Alumni Network. This involves coordinating training, facilitating meetings, supporting campaigns, managing administrative processes, and ensuring survivors are prepared, empowered, and safe throughout their involvement.

The role also involves developing innovative ways for survivors to collaborate with staff, contributing to service design, organisational strategy, and sector-wide initiatives. The post holder builds relationships across the asylum and modern slavery sectors, manages lived experience opportunities, and may support client progression and education casework when needed.

Throughout all responsibilities, the Coordinator champions survivor leadership, promotes diversity and inclusion, maintains the ethos of the charity, and practices strong self-care while working with traumatic material.

Recovery Worker - Peer Support Lead - HMP Wormwood Scrubs

Location: Shepherd's Bush

Salary: £28,207 per annum

About The Role

Are you passionate about empowering others, championing lived experience, and shaping meaningful change?

Join our dynamic Substance Misuse Service at HMP Wormwood Scrubs and play a key role in transforming recovery pathways for men in custody.

Working within the New Models of Care (NMOC) framework, our team delivers trauma-informed, recovery-oriented interventions that support individuals from their first days in custody through to release and resettlement. We work hand-in-hand with healthcare partners to ensure every service user receives holistic, person-centred support.

What You’ll Do

As our Peer Supporter Lead, you’ll be the driving force behind peer-led, lived-experience initiatives across the prison. Your role will include:

• Recruiting, training, and supervising peer supporters and mentors
• Empowering peer supporters to deliver interventions and wellbeing initiatives across all prison wings
• Promoting engagement in recovery pathways and strengthening service-user involvement
• Building effective links between the substance misuse service, healthcare teams, prison staff, and service users
• Supporting the continued development of the Peer Supporter programme in partnership with healthcare providers

What We’re Looking For

• A passionate, motivated individual with experience supporting vulnerable people
• Someone confident in leading, developing or mentoring others
• Strong partnership-building skills and a belief in the power of lived experience
• Flexibility to work occasional evenings/weekends as part of a rota
• Willingness to work across sites, including some deployment at HMP Brixton

This is a unique opportunity to shape a culture of hope, connection, and shared recovery. By developing the Peer Supporter programme, you will directly influence how service users support one another, build resilience, and take ownership of their wellbeing while in custody.

Please note the role includes an Interim allowance of £3000 reviewed every 6-months, basic salary based on 35 hours would be £25,207.00. This interim scheme will be reviewed on 31st March 2026.

About Us

We are The Forward Trust, the social enterprise with charitable status that empowers people to break the often interlinked cycles of crime and addiction to move forward with their lives. For more than 25 years we have been working with people to build positive and productive lives, whatever their past. We believe that anyone is capable of lasting change. Our services have supported thousands of people to make positive changes and build productive lives with a job, family, friends and a sense of community.

We are committed to our cause and the work we carry out as a charity. Equally the wellbeing and the employees who work for us are also important. Joining us an employee, we will offer you the following benefits -

• Flexible working
• Training and development opportunities
• Simply Health Cashback Scheme (optional)
• Season Ticket Loan Scheme
• Cycle to work scheme
• Crisis Loan Scheme
• Electric Car Scheme
• 3 x Wellbeing Days (pro rata'd for part time employees)
• Access to Blue Light Card
• 25 days (rising to 30 with length of service) Annual Leave plus Bank Holidays
• Contributory Pension Scheme – Employer matched contributions of up to 6% in the first two years’ service and up to 9% thereafter
• Death in Service Payment (2x annual salary)
• Critical Illness Insurance (subject to qualifying criteria)

To Apply

If you feel you are a suitable candidate and would like to work for Forward Trust, please click apply to be redirected to our website to complete your application.

Join Spectra in making a real difference. We’re seeking a passionate and proactive Outreach Coordinator for the Sex Worker Support Service (SWSS) to coordinate outreach activities, line manage a dedicated team of outreach staff, and strengthen partnerships that support sex workers across London. This role is central to delivering holistic health and wellbeing support, championing lived experience, and driving service innovation in a dynamic, inclusive environment. 

Key Responsibilities: 

• Coordinate and deliver outreach activities within the Sex Worker Support Service (SWSS), ensuring services meet community needs and support ongoing development.

• Oversee health and wellbeing programs, enabling access to appropriate support and resources for service users.

• Manage and support the outreach team, including line management, recruitment, training, scheduling, and performance monitoring.

• Build and maintain partnerships with local providers and agencies to strengthen referral pathways, share information, and promote training opportunities.

• Ensure effective monitoring and reporting, including data collection, case audits, and contributing to high-quality evaluation and service improvement.

• Represent Spectra and liaise with stakeholders, centering lived experience in service design and delivery while safeguarding and promoting community engagement. 

Skills and Qualities: 

• Leadership & Collaboration: Ability to manage and support a diverse team, build strong stakeholder relationships, and lead projects with a proactive, solution-focused approach.

• Knowledge & Values: Strong understanding of safeguarding, diversity, and LGBTQ+ issues, with a non-judgemental attitude and commitment to equity and inclusion.

• Communication & Organisation: Excellent project management, time management, and communication skills, with the ability to analyse data, write reports, and engage communities effectively. 

Location: This role will be hybrid with a requirement to be based at Spectra’s office in Vauxhall at least twice a month. 

Please complete and return the application form from our website, including the personal statement and diversity monitoring form – we do not accept CVs or incomplete applications. 

The deadline for applications is 5pm on 8th January. 

Interviews will be held from 15th to 22nd January 2026 at Spectra’s office in Vauxhall.

Action Duchenne supports, empower and equip every Duchenne Muscular Dystrophy community in their journey from diagnosis and beyond.

Duchenne Muscular Dystrophy is a muscle wasting condition for which there is no cure, but we journey alongside communities to empower them and provide information for them to make informed decisions. Action Duchenne has a team of passionate, supportive staff who are keen to do more for families living with Duchenne and has several staff with direct lived experience. 

At Action Duchenne, values are more than words—they shape how we work and interact every day. For this role, we are looking for a team member who can reflect our values: 

• Supportive – Actively assist colleagues and stakeholders, fostering a culture of collaboration and reliability. 

• Empathetic – Approach challenges with understanding, considering the impact on people internally and externally. 

• Respectful – Ensure all communications and decisions uphold dignity and fairness, especially when handling sensitive matters. 

• Community Focused – Make decisions that strengthen our community, ensuring all activity supports inclusive engagement and shared purpose. 

• Inclusive – Promote accessibility and equity, ensuring everyone feels valued and heard. 

Main Purpose of the Role: 

To provide proactive, emotional, and practical support to families and individuals affected by Duchenne Muscular Dystrophy (DMD) across England. The role will focus on early engagement, wellbeing assessment, community building, and delivery of workshops and events, while ensuring accurate tracking of support outcomes and data.   
  
The successful candidate will also lead on support for our End of Life and Bereavement projects, working collaboratively with healthcare professionals, palliative care teams, and hospices to ensure families have access to appropriate services and resources. 

  

Specific Tasks: 

1. Proactive Family Support  

• Initiate contact with newly registered families within agreed timeframes (email within 3 working days, call within 7–10 working days)  

• Contact to be made to all registered Action Duchenne members, knows to us in the Regions you will be covering, to ensure the current support offer is clear   

• Provide ongoing support tailored to individual needs, including emotional wellbeing, physical health, housing, financial security, self-esteem and respect, decision-making, social engagement, quality of life, and access to care  

• Use the Action Duchenne Assessment Form and Action Plan to identify and respond to areas of concern  

2. Advanced and End-of-Life Care Support 

• Provide compassionate, practical, and emotional support to children, young people, and adults living with Duchenne, and their families, as they navigate advanced stages of the condition and end-of-life care. 

• Work collaboratively with healthcare professionals, palliative care teams, and hospices to ensure families have access to appropriate services and resources. 

• Develop and share guidance, resources, and workshops to help families prepare for and manage advanced care planning, symptom management, and emotional wellbeing. 

• Support families in understanding available options for care settings (home, hospice, hospital) and facilitate informed decision-making. 

• Ensure continuity of care and communication between multidisciplinary teams, while respecting family preferences and cultural considerations. 

• Offer signposting to bereavement support and follow-up services for families after loss. 

3. Wellbeing Tracking and Outcome Measurement  

• Administer wellbeing questionnaires and record scores across key domains (e.g. physical health, emotional wellbeing, financial security)  

• Collaborate with families to co-create action plans and track progress  

• Ensure all data is entered into CRM (E-Tapestry or similar) within the allotted timeframe, i.e. immediately after or during the call.  

4. Community Engagement and Event Delivery  

• Organise and deliver regional meetups (minimum one per quarter)  

• Facilitate support groups (virtual and in-person) for parents, young people, and extended family (minimum one per quarter)  

• Support delivery of workshops and events aligned with programme schedule (e.g. music, life skills, employability)  

• Actively participate in networking events to promote Action Duchenne within our communities, build relationships, and drive growth in membership by encouraging registration of families affected by Duchenne 

5. Stakeholder Collaboration  

• Liaise and develop relationships with external organisations including NHS care advisors and clinics, local authorities, counselling services, and other charities  

• Represent Action Duchenne in across your regions and build relationships with local networks  

6. Administration and Reporting  

• Maintain accurate records of all interactions and support provided  

• Contribute to quarterly reporting on activity delivery, capacity utilisation, and family impact  

• Support development of CRM processes and service delivery improvements  

7. Key Performance Indicators (KPIs):  

• New contact acknowledgement email: within 3 working days

• New contact follow-up call: within 7–10 working days 

• Families contacted per week: 12–15 hours of direct contact

• Regional meetups: 1 per quarter

• Support groups delivered: 9–12 per year

• CRM data entry: within the same day of interaction

• Family outcomes tracked: via wellbeing questionnaire and action plan 

• Number of families receiving end-of-life care guidance or resources per quarter. 

• Advance Care Planning: Percentage of families supported with advance care planning discussions within 4 weeks of request. 

• Palliative Care Signposting: Number of referrals/signposts made to palliative care or hospice services. 

• Resource Development: Number of end-of-life care resources (guides, workshops, webinars) created and shared annually. 

NB This is not an exhaustive list, the role holder will be asked to carry out additional tasks as required for the Team’s successful service delivery. Such tasks will always be reasonable and broadly in line with current knowledge levels and skill sets. 

Please find the job specification, including required skills and qualifications below.

Application deadline: 22nd December at 9am GMT.