Parent services coordinator jobs in Edinburgh

This is a grant funded role, fixed term for two years, with the opportunity for conversion to a permanent role should funding allow.

Main Purpose of the Role:

To provide proactive, emotional, and practical support to families and individuals affected by Duchenne Muscular Dystrophy (DMD) across Scotland. 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 young people living with Duchenne during 2 key transition points (primary to secondary school stage and moving into adulthood). They will work closely with the England-based Transitions Coordinator to deliver a joined-up programme of support across the UK. 

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 Scotland, 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. Transitions Support 

· Lead transition support across all nations, with a focus on Scotland, for children and young people facing key life changes, including: 

· Moving between educational settings such as primary to secondary 

· Transitioning from paediatric to adult health services 

· Changes in mobility and independence (e.g. transitioning to using powerchairs)

· You will lead, but expected to work collaboratively with the England-based Transition Coordinator to ensure consistency and continuity of support across the UK 

· Develop resources, guidance, and workshops to support families through transitions 

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 

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

5. Stakeholder Collaboration 

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

· Represent Action Duchenne in Scotland 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 24 hours of interaction 

· Family outcomes tracked: via wellbeing questionnaire and action plan 

· Transition support delivered: tracked through engagement, resources, and feedback 

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 below the job specification, including required skills and qualifications.