Head of Family Support - Dravet Syndrome UK

Charisma Charity Recruitment; United Kingdom; Remote; GBP 30,000 - 40,000; Part time

Job summary

A dedicated charity in the UK is seeking a Head of Family Services to support families affected by Dravet Syndrome. This part-time role (24 hours per week) involves engaging with stakeholders, providing professional supervision, and interpreting legislation to protect rights. The position is fully remote with some travel required. Looking for candidates with significant experience in disability and complex needs environments.

Qualifications

• Significant experience working with families with disabilities or complex needs.
• Good working knowledge of disability law and relevant frameworks.
• Demonstrable expertise in safeguarding for children and vulnerable adults.

Responsibilities

• Interpret and use current legislation to protect people's rights.
• Engage effectively with families and stakeholders.
• Provide high-quality professional supervision to staff.

Skills

Interpersonal skills

Communication skills

Organizational skills

Teamwork

Leadership skills

Job description

Overview

We are working in partnership with Dravet Syndrome UK (DSUK) a small independent UK charity dedicated to improving the lives of those affected by Dravet Syndrome. The charity was founded in October 2008 by a small group of 30 families. Today, DSUK is a registered charity helping nearly 600 families with support, education, and research services, underpinned by a world-class Medical Advisory Board.

They are now seeking a Head of Family Services, a newly created senior role to enable DSUK to drive forward with the implementation of their five-year strategic plan, including supporting and empowering families to access the support to which they are entitled in living with a complex and life limiting condition.

This is an exciting opportunity to join a growing organisation and help guide the next stage of their development, enabling them to make a positive difference in the lives of more people affected by Dravet Syndrome in the UK.

Responsibilities

• Demonstrable ability to interpret and use current legislation and guidance to protect and/or advance people\'s rights and entitlements
• Exceptional interpersonal and relationship-building skills, with the confidence and ability to engage effectively with families, healthcare professionals, social workers and other stakeholders
• Excellent communication skills, including the ability to articulate complex issues clearly and persuasively in written and verbal formats
• Proven ability to provide high quality professional supervision (reflective practice) to qualified and unqualified staff, in order to maximise personal effectiveness and professional development
• Excellent organisational and teamworking skills to be able to work remotely, manage and prioritise a varied caseload and delegate effectively

Qualifications and experience

The successful candidate will be compassionate, skilled, hands-on and collaborative with significant experience of a working environment involving families with disability and/or complex needs (e.g. social care, health care, special needs education, disability law and/or family support in a similar organisation). You will have good working knowledge of disability law and other relevant statutory and regulatory frameworks, relevant organisations and agencies involved, and experience of an appropriate range of professional interventions. You will have demonstrable expertise and advanced training in safeguarding for children and vulnerable adults. You have proven leadership skills with the ability to motivate and support colleagues towards achieving shared goals.

Please note: As part of DSUK’s commitment to safeguarding, the postholder is expected to undertake an enhanced DBS check.

Applications should include your CV and supporting statement.

We welcome and encourage applications from people of all backgrounds. We do not discriminate on the basis of disability, race, colour, ethnicity, gender, religion, sexual orientation, age, veteran status or other category protected by law.

Details

Hours: Part time, 24 hours a week

Location: Fully Remote, with monthly travel across the UK

Closing date: 9 November 2025

Charisma vetting interviews to be completed by 12 November 2025