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Prospectus is proud to be partnering with our client, a small, specialist health charity dedicated to improving the lives of everyone affected by Dravet Syndrome.

Dravet Syndrome is a rare, life-long and life-limiting form of epilepsy that affects approximately one in every 15,000 people in the UK (around 2-4,000 people in total). It is a complex epilepsy syndrome so as well as severe, difficult-to-control seizures, people with Dravet Syndrome live with intellectual disability and a spectrum of associated difficulties including with speech and language, mobility, behaviours, eating and sleep. It is also common to have a co-diagnosis of autism and/or ADHD.

Founded in 2008 by a group of parents seeking support and information, DSUK has grown significantly over the past 17 years. Today, DSUK supports nearly 600 registered families across the UK and reaches over 2000 people in total, including parents and carers, siblings and bereaved families. As an organisation they deliver a range of impactful services aimed at improving the lives of beneficiaries through family support, professional education and medical research.

At a time of continued growth for the charity, and as medical advancements in the field continue (including clinical trials for the first gene therapies in rare epilepsy), DSUK are now looking to recruit a strategic, collaborative new CEO to help shape the next stage of their journey.

As the organisation’s new CEO, you will provide inspiring, values-driven leadership across the organisation, holding overall responsibility for the day-to-day operations and long-term growth. You will work closely with the Board of Trustees to develop and deliver the organisation’s next five-year strategy, steering organisational priorities, strengthening culture and ensuring the charity continues to grow, both in terms of scale and in impact. You will lead a small, dedicated, cross-functional team across family support, fundraising, communications and research, driving collaboration across all teams. You will also lead on impact and quality, embedding a culture of learning and continuous improvement. A key part of your role will involve developing and building strong relationships with a range of stakeholders, including families, professionals, researchers, pharmaceutical companies as well as other charities and funders. You will also represent DSUK at relevant conferences and sector events, both in the UK and occasionally internationally.

This is an exciting opportunity to shape the strategic direction of a small, specialist, growing organisation providing life-changing services. To apply for this role, you will be a confident, collaborative leader with significant senior leadership experience in the charity or not for profit sector (experience of working in a rare disease, health, disability or patient advocacy charity is desirable). You will have demonstrable experience of scaling an organisation, and navigating the complexity that growth brings. You will be a skilled communicator, confident at building relationships across health, care or community sectors. You will be resilient, adaptable and comfortable with the breadth and pace of working as a senior leader within a small charity.

If you are interested in applying for this exciting position, please submit your CV in the first instance. Should your experience be suitable, we will send you the full job description and will arrange for a call to fully brief you on the role.

At Prospectus we invest in your journey as a candidate and are committed to supporting you with your application. We welcome all candidates to apply, regardless of age, sex/gender, disability, race, religion, sexual orientation, marital status or pregnancy/maternity. If you have any disability and require reasonable adjustment/s to any part of the process then please contact Victoria Savva at Prospectus.

Please note, this will be home-based with regular travel across the UK (and occasional international travel). Working hours are Monday to Friday, 09:00–17:30 (however some flexibility for evenings and weekends is required).

Lloyds Bank Foundation 

Head of Programme Design and Organisational Development 

Starting Salary: £66,438 (if London-based); £61,872 (if not London-based) 

Contract: Full-time, permanent contract (we are open to conversations about flexibility - so please ask) 

Location: Remote role - can be based anywhere in England or Wales with an expectation of frequent travel across England and Wales 

About Lloyds Bank Foundation 

Lloyds Bank Foundation for England and Wales is an independent charitable foundation, backed by Lloyds Banking Group and the people within it. We want everyone to be in a good place - personally, in a home that’s a good place to live, and in a community that’s a good place to belong. 

We play our role by connecting and catalysing community-led change, providing the money, time, tools and connections that build organisations’ capacity and capability, to make people’s lives better and their communities stronger. 

We back people and communities across England and Wales, to make that happen, because when you back brilliant people, brilliant things happen. Our communities are full of ambitious, energetic and determined people stepping up to make their neighbours’ lives better and their communities grow stronger. Day in, day out. 

About the Role 

This is a leadership opportunity to shape how the Foundation designs, delivers and strengthens its programmes across England and Wales. 

As Head of Programme Design and Organisational Development, you will lead the Foundation’s approach to programme design, organisational development and volunteering, ensuring everything we do is high quality, evidence-informed and grounded in lived experience. 

You will set the standards, frameworks and tools that underpin programme design across the organisation, working closely with Programme Leads to design new programmes and strengthen existing ones. You will also lead our organisational development offer, ensuring charities and partners are supported to become stronger, more resilient and better connected. 

Alongside this, you will shape how volunteering contributes to our work, embedding it across programmes and ensuring it supports both community capacity and connection. 

You will work across teams and directorates to ensure programme design, organisational development and volunteering are fully aligned and working together to deliver meaningful community-led change. 

About You 

We’re looking for an experienced and credible leader with a strong background in programme or service design, ideally in complex or multi-partner environments. 

You will bring a deep understanding of how organisational development builds capacity and resilience, alongside experience of using evidence and insight to improve programmes and outcomes. 

You will be confident developing frameworks, standards and approaches that ensure quality and consistency, while also enabling innovation and learning. 

You will be a collaborative and relational leader, with strong partnership skills and the ability to work across internal teams and external organisations. A commitment to diversity, equity, inclusion and belonging is essential. 

How to Apply 

Please click ‘Apply’ to be redirected to our website, where you can download the Candidate Information Pack and find details of how to apply. 

For an informal conversation about the role and application process, please contact our recruitment partner, Atkinson HR via the information in the candidate pack.

Our Commitment to Diversity, Equity and Inclusion 

We hold Disability Confident Employer status (Level 2) and are working towards full status by 2027. This means that if you're a disabled applicant and your CV and application answers clearly demonstrate that you meet the essential criteria for the role, we will invite you to interview. 

More broadly, we are committed to building a diverse team that reflects the communities and people we work with. We believe that diversity of background, experience and perspective makes us stronger and helps us make better decisions. We actively welcome applications from people who are under-represented in the charity sector, including people from Black, Asian and minoritised ethnic communities, disabled people, and those with experience of the issues our funded charities work to address. 

Key Dates 

Closing Date: Thursday 28th May 2026 

Optional Q&A Session: Wednesday 6th May 2026 at 09:00-10:00 

First Interview: Tuesday 9th June 2026 

Second Interview: Thursday 18th June 2026