The Epilepsy12 Audit works collaboratively with stakeholder organisations and within the Royal College of Paediatrics and Child Health to deliver the audit programme accurately and efficiently. Clinical accountability for the audit is provided by the Vice President for Science and Research, Professor Paul Dimitri. Clinical leadership is provided by the Epilepsy12 Clinical Lead, Dr Colin Dunkley, and organisational and contractual accountability is provided by the RCPCH Director of Research and Quality Improvement, Emily Arkell.
Governance of Epilepsy12 at RCPCH
The audit is governed operationally by a Project Board, chaired by the RCPCH Vice President for Science and Research. It comprises members from key stakeholder organisations and groups, including several parent representatives. The Project Board meets quarterly to provide direction for the work of the Epilepsy12 audit programme. Membership of the project board is based on expertise, knowledge, and potential contribution towards the development of the Epilepsy12 audit and is not intended to be representative of all the project stakeholders.
The Methodology and Dataset Group meets quarterly to assist the Project Board with technical matters, such as data analysis planning, presentation of results, and development and review of measures. The group acts to consider and agree proposals for development and implementation regarding Epilepsy12 methodology and datasets, particularly relating to the organisational and clinical components to the audit.
Epilepsy12 hosts the OPEN UK and UK Paediatric Epilepsy Programme Board meetings and supports the NHS England CYP Transformation Program - Epilepsy Oversight group.
Epilepsy12 stakeholder organisations
Association of Neurophysiological Scientists - The professional body for clinical physiologists working in the field of Clinical Neurophysiology. Its principal aims are to represent its members at a national level, set standards of practice, promote career development, set education and training standards and award qualifications.
British Academy of Childhood Disability - Membership is open to all professionals working in the field of childhood disability, including paediatrics, psychiatry, specialist nursing, speech and language therapy, physiotherapy, occupational therapy, psychology and education.
British Paediatric Neurology Association - The professional organisation for doctors who specialise in the care of children with neurological disorders.
British Society for Clinical Neurophysiology - A medical charity whose aims are to promote and encourage for the public benefit the science and practice of clinical neurophysiology and related sciences.
Epilepsy Action - A community of people committed to a better life for everyone affected by epilepsy. They work towards high quality, accessible epilepsy healthcare services, so that people with epilepsy have the support they need to manage their condition. They want wider awareness and understanding of epilepsy, so that people living with the condition are treated with fairness and respect.
Epilepsy Scotland - In Scotland 54,000 people live with epilepsy. Anyone can develop epilepsy at any time, and eight people a day in Scotland do. Epilepsy Scotland want to make sure the needs of people with epilepsy are met. This is why they campaign for improved healthcare, better information provision and an end to stigma.
Epilepsy Specialist Nurses Association - ESNA is a professional organisation whose membership consists of nurses and other health professionals working to support people with epilepsy in the fields of adults, learning disabilities, and paediatrics. ESNA works within its membership to raise the profile of epilepsy and to encourage a holistic and co-ordinated approach to enable patients to reach the goal of self-management.
Healthcare Quality Improvement Partnership - The UK’s largest national clinical audit commissioner, HQIP is uniquely placed to support evidence-based clinical effectiveness and data-informed services as well as provide advice around innovation and opportunities to connect with the healthcare sector.
National Association of Independent Schools & Non-Maintained Special Schools - NASS is the voice of the non-maintained special school sector. They aim to put special schools at the heart of the school policy and practice, enabling them to be centres of excellent and innovative practice for children and young people with SEND.
Organisation of Paediatric Epilepsy Networks in the UK - OPEN UK is a clinical network connecting NHS Health Boards and Trusts that provide care for children with epilepsies with regional networks and a UK Working Group. The Epilepsy12 team host the OPEN UK working group meetings quarterly.
Royal College of Nursing - The RCN is a membership organisation of more than 435,000 registered nurses, midwives, healthcare assistants and nursing students. They are a both a professional body, carrying out work on nursing standards, education and practice, and a trade union.
Royal College of Paediatrics and Child Health - The membership body for paediatricians in the UK and around the world, playing a major role in postgraduate medical education, professional standards, research and policy.
Young Epilepsy - This national charity supports children and young people aged 25 and under with epilepsy and associated conditions, as well as their families. With over 100 years expertise they provide world class diagnosis, assessment and rehabilitation for children and young people. They also undertake research into the condition and how it can be treated.
Epilepsy12 project team
Niky Raja, Epilepsy12 Audit Manager, RCPCH
Dr Colin Dunkley, Epilepsy12 Clinical Lead
Simon Duncan, Project Administrator, RCPCH
Tom Keiller, Project Administrator, RCPCH
Hannah Evans, Epilepsy12 Data Analyst, RCPCH
Amani Krayem, Epilepsy12 Project Coordinator, RCPCH
Robert Grant, Epilepsy12 Statistical Advisor, RCPCH
Calvin Down, Head of Audits, RCPCH
Saira Pons Perez, Senior Data Analyst, RCPCH