Jobs for the Disability sector

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.