The Head of Programmes will be instrumental in delivering our ‘All-through Support’ project which recently received support from The National Lottery.
Young people and adults living with Duchenne muscular dystrophy (DMD) face many challenges in their foreshortened lives. Our support is vital to thousands of young people, adults and families living with Duchenne. This is a great opportunity for the Head of Programmes to make a significant contribution within our small yet vital patient organisation.
About us
Action Duchenne was established in 2001 as the first national charity dedicated to supporting young people, adults and their families living with Duchenne muscular dystrophy. 87p in every £1 we raise is invested in charitable activities; research, educational and support programmes, and life-changing campaigns. We are looking to appoint an Outreach Officer, to make a real contribution to the lives of those living with Duchenne.
Job Title: Head of Programmes
Reports to: National Director
Type: Permanent
Working week: 30hrs, 4 – 5 days/ week
Salary: £40k – £45k per annum, pro rata
Location: Flexible Home/Office split
Line Management: 4
Overview
Most children are diagnosed with Duchenne muscular dystrophy around the age of 4. Hearing the words “your child has Duchenne muscular dystrophy” is extremely upsetting and emotionally challenging for families to understand, process and cope with. It leads to a myriad of dark thoughts and feelings and anticipatory grieving shortly follows.
We would like to provide all families living with Duchenne with free and widely available support that is not otherwise available. We want every family receiving this life-changing diagnosis to be able to immediately access whatever it is they need to help them at such a difficult time. This role is a vital part of that plan.
Benefits
We offer the competitive salary shown, flexible working hours, home-working and an innovative and supportive working environment.
Why should you apply for the role of Head of Programmes?
Young people and adults living with Duchenne muscular dystrophy (DMD) face many challenges in their foreshortened lives. Our support is vital to thousands of young people, adults and families living with Duchenne. We developed our programme in response to their needs and since 2017 we have been developing a sustainable, long-term funding model for this work.
This is a great opportunity for you to make a significant contribution within our small yet vital patient organisation.
We work to achieve our vision by
- Supporting the Duchenne community – to bring people together to share their experiences and learn from each other.
- Working with the NHS to improve care and provide their patients with the earliest possible access to approved medicines.
- Funding research into potential therapeutic strategies for everybody living with Duchenne.
- Helping to create an inclusive society where everybody is equal, and disability is accepted.
About the role
This is a great opportunity for you to make a significant contribution within our small yet vital patient organisation. Supported by the Support and Fundraising team, the Head of Programmes will work directly with our Duchenne young people, adults, and their families, manage and oversee our supporting families programme of activities and services to ensure that project aims are achieved and all the support activities contribute to the charity’s vision, mission and strategic objectives.
We are about to launch a new two-year support programme, delivered with partner organisations, to bring people together in a physical and emotional sense, we will build our community and improve the communities and places that matter to our families. Most importantly, we will support our wonderful Duchenne families to live a life that meets, and exceeds their aspirations.
Key deliverables will also be:
- leading the Support and Fundraising Team to prepare a workplan that will achieve agreed key performance indicators and work alongside all agreed organisational plans.
- working with the National Director to agree and implement an engagement strategy to raise the profile of Action Duchenne and increase the awareness of the Duchenne condition.
- Preparing annual business plans and budgets, developing and maintaining income and expenditure tracking and evaluation systems with the accountant and the Treasurer.
- Providing leadership for the Support and Fundraising Team strategy, working with the National Director to develop compelling projects capable of driving revenue generation.
- Establishing an impactful external engagement strategy for the Support and Fundraising Team that takes account of key audiences including Duchenne families, partner organisations and the wider community.
- Working alongside the Science Officer and the Executive Support Officer who has responsibility for the further development of our research strategy.
- Evolving and enforcing the Action Duchenne communications and brand guidelines to ensure all communications are consistent and sensitive and effective.
Candidate specification
The Head of Programmes will have a strong commitment to Action Duchenne’s aims and objectives and a drive to deliver tangible outcomes.
You will be a self-starter with a hands-on, operations-focused approach. As Head of Programmes you will work in a collaborative and flexible manner with our team of staff, volunteers, committees, and trustees.
Essential criteria
- Passionate about improving the lives of young people, adults and their families living with Duchenne.
- A demonstrable track record in team management with at least two years’ experience in senior management, ideally in patient-led organisations.
- A proven track record of delivering services and will be expected to demonstrate at interview your experience of managing multiple projects, budgets, staff and volunteers.
- Ability to think at a strategic and operational business level including project planning, monitoring and evaluation.
- Excellent written and oral presentation skills and ability to communicate effectively.
- Has empathy and can communicate well with audiences of all levels
- Good organisational and time management skills, ability to work as part of a team and work on own initiative and to deadlines
- Ability to be assertive but also have empathy and ability to be sensitive with staff and volunteers.
- High level organisational skills with the ability to meet deadlines under pressure
- An understanding of and commitment to Equal Opportunities and the ability to promote this in the day-to-day work of the post.
Desired criteria
- Experience working in the health sector or at a patient-led charity
How to apply
Send your CV and cover letter to HR@actionduchenne.org, explaining why you are the best candidate for the Head of Programmes and what is your connection, if any, to Duchenne muscular dystrophy.
Application deadline: 28th February 2022.
Successful applicants will be invited to attend a face to face first interview via Zoom. With 2nd interviews, via Zoom, and a final in-person interview with the National Director.
If this sounds like an opportunity you would succeed in, please get in touch!
A note to candidates:
Studies have shown that women and people of colour are less likely to apply for jobs unless they believe they meet every single one of the qualifications as described in a job description. We are committed to building a diverse and inclusive environment and we are most interested in finding the BEST candidate for the job. That candidate may be one who comes from a less traditional background, and that’s okay. We would strongly encourage you to apply, even if you don’t believe you meet every one of the qualifications described.
EQUAL OPPORTUNITIES STATEMENT
As part of its recruitment policy, Action Duchenne intends to ensure that no prospective or actual employee is discriminated against on the basis of race, sex nationality, marital status, sexual orientation, employment status, class, disability, age, religious belief, or political persuasion, or is disadvantaged by any condition or requirement which is not demonstrably justifiable.
Demelza and Action Duchenne collaborative project: transition to adulthood fact-finding
