We’re Recruiting: Director of Services and Safeguarding
Welcome to Action Duchenne
“Your child has Duchenne Muscular Dystrophy”. These are the words that almost 2 families a week will hear in the UK. Duchenne, a rare and progressive muscle wasting and life limiting condition affects approximately 1 in every 3500 boys, with diagnosis between the ages of 3 and 5.
Action Duchenne supports the almost 2500 UK families that are living with Duchenne.
We have a clear purpose. We exist to support, empower and equip every DMD community in their journey from diagnosis and beyond. For over 25 years, we have been doing exactly that for thousands of families, but we don’t do it alone. Through comprehensive partnerships with healthcare providers, other charities, local authorities, companies, research organisations and the community itself, we have established a unique service, placing Quality of Life, not searching for a cure, as our core focus. Furthermore, with lived experience at the heart of everything we do, we remain needs led with a constant listening ear to our community.
Through tailored information, education advocacy, community connection and wellbeing support, we ensure families are not facing Duchenne alone. Entirely funded through donations and charity grants, our services include:
- 1-2-1 support
- Supporting parents through diagnosis
- Group counselling
- Specific support groups such as ‘Dad against Duchenne’
- Opportunities for online and in person meet ups
- Transitioning to adulthood support for boys and men living with Duchenne
- Science communication and education
- End-of-life and bereavement services
All of our support is centred on what our community want and need, with a strong holistic and person-centred approach that focuses on people, not labels. This is an exciting time to join Action Duchenne as we work closely with the community to develop the ways we work and the support and opportunities we offer.
Introduction from CEO
Thank you so much for your interest in working for Action Duchenne. We are a small but mighty charity having started 25 years ago. We support those living with Duchenne Muscular Dystrophy and their families, and I’m delighted that you’re interested in joining us on our journey.
Our team are, without a doubt, our greatest asset. Our values really are lived out in each conversation and engagement, and I’m proud of our collaborative and positive culture. We have a passionate, supportive team who are committed to doing more for families living with Duchenne and have a number of staff with direct lived experience.
At Action Duchenne, our values are more than words – they shape how we work and interact every day. Each and every one of our team role models 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.
I’m fortunate enough to lead this organisation as we go through a period of strategic transformation, and that’s where you come in! We are looking for a passionate, emotionally intelligent and experienced leader who will will ensure that our services are person centred, safe, accessible and evidence based, and that they reflect the needs and experiences of the individuals, families and communities we support.
I hope this recruitment pack provides you with a deeper understanding of our culture, our team, what we do and who we’re looking for. If you feel ready for this opportunity and want to bring your drive, passion and expertise, we would be delighted to receive your application.
Thank you for your interest in working with Action Duchenne. I look forward to hearing from you.
All the very best,
Katie
The Benefits of working for Action Duchenne
Working for Action Duchenne can be extremely rewarding. We have a hard working and friendly team who are all focussed on doing the best for our community. We may be small but we have a big heart and we pride ourselves on a positive culture of teamwork, trust and putting our beneficiaries at the centre of everything we do. As a charity we also value our team too and as such offer the following:
Flexible working hours and TOIL
We offer a flexible approach to working with core hours being 09.30-14.30. Many of our team have children, caring responsibilities and other commitments outside of work and work hours which suit them. We also provide Time Off In Lieu when staff are required to work occasional evenings or weekends.
Home working
We do not have a central office and all work from home, with an all team meeting every 6 weeks or so – usually in London. There may also be the occasional departmental meeting at a location which is convenient to the team members. Dates for all in person meetings are set with plenty of notice.
Holiday
25 days of annual leave (pro rata) plus Bank Holidays. We also provide three additional days at Christmas and the day following our biggest event of the year – our Community Summit in November.
Enhanced Sick Pay
Following a successful probation, we top up SSP to ensure you receive 100% of your salary for four weeks.
Pension
5% employer contribution instead of the statutory 3%.
Supporting your wellbeing
Access to confidential advice on mental health and wellbeing as part of our Employee Assistance Programme. We also have a paid ‘Wellbeing Hour’ once a month where the team are encouraged to do something to support their wellbeing.
Many of the above benefits are non-contractual and therefore can be changed without consultation. However we will always be committed to supporting our staff as much as we can as our staff are core to everything we do!
The teams you will be working with:
The Support Team:
Our support team is currently growing, with recruitment underway for an Events Officer and Scotland-focussed Outreach Support Officer post taking the team up to 7 people including the Director.
Senior Leadership Team:
Dr Mehreen Arif, Chief Scientific Officer
Mehreen joined Action Duchenne in March 2022 and is approaching a significant milestone of five years with the organisation, demonstrating a sustained commitment to its mission and community. With a strong scientific foundation, Mehreen previously worked at GlaxoSmithKline as a postdoctoral research associate where she contributed to advancing understanding of the biological pathways underpinning diabetes. Earlier in her career, Mehreen led an innovative project exploring a novel treatment for solid tumours, work that successfully progressed into Phase I and II clinical trials, underscoring both scientific rigour and real-world impact.
Mehreen is passionate about translating complex research into tangible benefits for individuals and communities, ensuring that scientific innovation delivers lasting, life-enhancing outcomes.
Susie Croft, Director of Fundraising & Communications
Susie joined Action Duchenne in January 2026. Susie has worked in the charity sector since 2007 with 17 of those years in fundraising. Her previous leadership roles include Head of Income Generation at Cornwall Air Ambulance, Interim CEO and Head of Fundraising at The Wave Project and Philanthropy Director at Cornwall Community Foundation. Susie is a trustee of a large grant making trust and has recently graduated with the Institute of Leadership. Susie is passionate about connecting donors to a cause
Katie Endacott, CEO
Katie will be line managing this role, having joined the organisation in March 2025. Katie has worked in the charity sector for 20 years, most recently in leadership roles at Nightline Association, Raising Futures Kenya and Frank Water. Katie is involved with a variety of charities, as a Trustee and mentor.
Role description: Director of Services & Safeguarding
This is a varied role with no two days being the same! A typical week might include; working with SLT colleagues on strategic priorities, ensuring these focus on community needs and planning how they can be achieved in practice; linking with external stakeholder to develop partnerships that help close gaps in support; reviewing data to analyse and report on our impact; leading team meetings and 1:1s or working with the board to provide insights and expertise to inform decision making and governance.
Responsible to: CEO
Pay band: Band 6, point 1 (£55,000 FTE)
Hours: 0.6-0.8 FTE (22.5-30 hours per week)
Responsible for: Outreach Support Officers x 4, Project Co-ordinator, Events Officer
This new role is part of the Senior Leadership Team, responsible for leading, managing and shaping Action Duchenne’s Support services. We have a strong services team which has grown organically for many years, and we are now looking to strategically invest in its development.
This role will provide strategic leadership and operational oversight for all support, wellbeing and community services delivered by the organisation. This includes emotional and practical support services, wellbeing and counselling programmes, peer and community engagement, and information services.
As Director of Services and Safeguarding, you will ensure that our services are person centred, safe, accessible and evidence based, and that they reflect the needs and experiences of the individuals, families and communities we support. You will lead a high performing directorate with a strong culture of accountability, safeguarding, quality assurance, outcome measurement and continuous improvement.
This role is also accountable for ensuring that the operational infrastructure underpinning service delivery — including triage, caseload management, reporting, volunteer involvement and stakeholder networks — is robust, consistent and aligned with organisational priorities. As the Designated Safeguarding lead for the organisation, you will ensure that a robust and proactive approach to safeguarding is embedded across all of our work.
Key Responsibilities
1. Strategic Leadership
- Contribute to the development and delivery of the organisation’s long term strategy as part of the Senior Leadership Team.
- Provide strategic leadership for all service areas, setting clear priorities aligned to organisational goals, community needs and which meet funding and regulatory requirements.
- Play a key role in organisational leadership, as part of the senior leadership team, taking clear accountability for quality, safety, outcomes and impact.
- Ensure effective workforce planning, talent development and succession planning across our services.
- Drive service innovation and scalable delivery models that extend reach and impact while maintaining quality and financial sustainability.
- Act as a senior ambassador for the organisation, strengthening its reputation as a trusted, expert voice in the sector.
- Provide senior leadership of safeguarding across the organisation, nurturing and embedding a culture of proactive safeguarding that is centred on principles of respect, safety, empowerment and joint working.
- Ensure a clear and effective process is in place to identify, act upon and learn from safeguarding concerns and issues.
2. Leadership of Support Services
- Provide strategic oversight of all support services, including individualised and group support, wellbeing programmes, peer support, community engagement and information services.
- Ensure services are safe, effective, accessible and consistently delivered to agreed standards.
- Maintain high service quality, governance and safeguarding, including supervision, case review, risk management and compliance.
- Ensure teams have access to, and undertake, up-to-date training, guidance and information relevant to beneficiaries (e.g., legislation, entitlements, clinical updates).
- Ensure a clear and robust process is in place to record and monitor service impacts and quality, identifying and acting on insights and trends to ensure continuous service development and improvement.
- Oversee service budgets, ensuring responsible stewardship of charitable funds and clear alignment between cost, quality and impact.
3. Operational Oversight and Service Infrastructure
- Ensure clear systems for triage, caseload allocation and capacity monitoring across all service teams.
- Oversee the development of consistent processes for reporting, engagement tracking and service monitoring.
- Ensure accurate and compliant use of CRM and data systems, maintaining high quality information management.
- Support the recruitment, induction and development of staff and volunteers involved in service delivery.
- Ensure appropriate cover and continuity plans across service teams during absence or peak demand.
- Maintain a national database of external stakeholders, ensuring effective signposting and partnership working.
4. Community Engagement and Volunteer Development
- Lead the strategic development of Duchenne support services across the UK.
- Ensure services operate within clear quality, safeguarding and accountability frameworks.
- Strengthen volunteer recruitment, training, supervision and recognition systems.
- Embed lived experience in service design, evaluation and improvement.
- Develop sustainable regional networks that extend reach while maintaining consistent standards.
5. Information Quality, Performance and Governance
- Ensure all patient and family information is accurate, accessible, evidence based and regularly reviewed.
- Maintain compliance with recognised information quality standards (e.g., PIF TICK or equivalent), ensuring structured review cycles and clear ownership.
- Lead the development and implementation of a department‑wide performance and impact framework, including KPIs, outcome indicators, quality measures and reporting expectations.
- Establish regular reporting cycles that provide the Executive Team and Trustees with clear insight into service quality, risk, outcomes, equity of access and cost effectiveness.
- Ensure compliance with relevant legislation, safeguarding standards, clinical governance requirements and sector best practice.
- Present impact data, risk analysis and strategic insight to the Board to support evidence based governance and long term planning.
- Embed a culture where evaluation, learning and continuous improvement are routine, and where data and lived experience meaningfully shape decision making.
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.
Person specification
At Action Duchenne we are committed to Equality, Diversity and Inclusion so if you like the look of this role and your past experience doesn’t align perfectly with everything in the job description, we would still like to hear from you. You may be just the right candidate for this or other roles.
Likewise, we will work with you to accommodate any reasonable adjustments for interview.
Knowledge and Experience:
Essential:
- Significant senior leadership experience within a charity, health, social care or related environment.
- Experience operating at senior management or director level with organisation wide accountability for service quality, performance and outcomes.
- Demonstrable experience leading remote teams.
- Proven experience developing/embedding triage systems, caseload management, outcome monitoring, quality assurance systems and impact reporting within service delivery.
- Experience overseeing complex services with accountability for safety, safeguarding, risk management and measurable outcomes.
- Experience developing and delivering strategy within a complex service environment.
- Understanding/experience of community engagement and involvement, ensuring that stakeholder needs and voices are at the heart of decision making.
- Experience with change management, implementing a significant shift change in service delivery.
- Strong experience managing significant budgets and linking financial stewardship to impact and service sustainability.
- Experience of building and maintaining relationships with external partners, including NHS teams, local authorities, community organisations and funders.
- Experience of service innovation, redesign and continuous improvement informed by data, insight and lived experience.
- An understanding of and commitment to Equal Opportunities and the ability to promote this in the day-to-day work of the post.
- Strong understanding of service design, co‑production, quality assurance and outcome measurement.
- Knowledge of safeguarding responsibilities and clinical governance within a service delivery context.
- Understanding of legislation, entitlements and systems relevant to beneficiaries (e.g., accessibility, equal opportunities, disability related benefits, education‑ and health planning).
- Knowledge of the health and social care landscape, including commissioning, referral pathways and integrated care.
- Understanding of issues affecting people living with long term, life‑limiting or complex health conditions, and the needs of their families.
- Experience of leading/managing multi-disciplinary teams.
- Knowledge of equality, diversity and inclusion principles and how to embed them in service delivery.
- Understanding of data protection, GDPR and information governance requirements.
Desirable:
- Experience working in a condition specific, patient led or disability focused charity.
- Experience of national service delivery or remote operations.
- Knowledge of CRM systems and digital tools that support service delivery and reporting.
- Familiarity with recognised information quality standards (e.g., PIF TICK).
- Experience of being involved with end of life/bereavement services.
Skills and Abilities
Essential:
- Strong interpersonal skills, with the ability to build trust, motivate teams and develop positive relationships with beneficiaries, staff, volunteers and external partners.
- Exceptional communication skills, with the ability to communicate complex or sensitive information clearly, compassionately and confidently to a wide range of audiences.
- Excellent organisational and time management skills, with the ability to manage competing priorities, meet deadlines and maintain oversight of multiple service areas.
- Analytical and data‑literate, able to interpret performance data, identify trends, and use insight to drive improvement.
- Strategic thinker with the ability to translate organisational goals into clear operational plans.
- Skilled in problem‑solving, with a proactive, solutions focused‑ approach.
- Strong presentation skills, able to present confidently to Boards, funders, partners and community groups.
- Ability to lead through influence, modelling values based‑ leadership and fostering a culture of accountability and continuous improvement.
- Ability to be assertive while maintaining empathy, particularly when supporting teams dealing with emotionally complex situations.
- Competent IT user, including Microsoft Office, CRM systems and digital communication tools.
Attributes
Essential:
- Emotionally intelligent, reflective and able to manage sensitive issues with empathy and professionalism.
- Values driven, compassionate and committed to improving the lives of individuals and families affected by long term or life limiting conditions.
- Collaborative and inclusive leadership style, with a commitment to coproduction and lived‑experience involvement.
- Resilient and adaptable, able to navigate complexity and lead confidently through change.
- Creative, dynamic and innovative, with the ability to take ideas from concept to delivery.
- Demonstrable commitment to equity, diversity and inclusion.
- Personally, and professionally, responsible with high standards of integrity and accountability.
- A sense of humour and the ability to bring warmth and humanity to the role.
How to apply and timeframes:
Please apply via our application form, available here.
Closing date for applications: Wednesday 8 July, 10:30am
First round interviews (online): Week Commencing 20 July
Please contact hr@actionduchenne.org if you have any questions, concerns or would like to discuss this role.
