The ESSENCE-D questionnaire is part of a national research project to better understand and support children and young people who are waiting for a neurodevelopmental assessment.
Families of children and young people on the Paediatric Neurodevelopmental Service (PNDS) waiting list may be invited to take part and will be contacted directly by email, text message, or occasionally by post.
What is ESSENCE-D?
ESSENCE-D is an online questionnaire designed to build a fuller picture of a child or young person’s needs, strengths and experiences.
The questions look at different ways people think, feel and behave, including areas such as autism, ADHD and other neurodevelopmental differences.
It is based on the ESSENCE approach (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations), which takes a holistic view of development rather than focusing on a single condition.
Frequently asked questions
You may be invited to take part because your child is on a waiting list for a neurodevelopmental assessment with NHS Forth Valley.
This research, led by the Scottish Government, aims to:
- Understand the needs and experiences of children, young people and families
- Improve support and services across Scotland
- Identify gaps where further support may be needed
This is a national research project being carried out by NHS Forth Valley on behalf of the Scottish Government.
A research company called Malvern Insight (Malvern-i Ltd) is supporting the project.
If you choose to take part, you (or your child, depending on age) will be asked to complete the ESSENCE-D questionnaire online.
This involves answering questions about everyday experiences, development and behaviour.
No. Taking part is completely voluntary.
You can choose not to take part or stop at any time.
No. Taking part will not affect:
- Your child’s place on the waiting list
- How quickly they are seen
- Any assessment, treatment or support they receive
The questionnaire is used for research and service improvement only.
You may be offered a summary of your responses if you would like one.
This summary is not a diagnosis or clinical assessment but may highlight areas where there are higher or lower scores.
No. Some questions may feel personal and you can skip any questions you do not want to answer.
This may include:
- Your name and contact details
- Your child’s details such as age and gender
- How long your child has been waiting for assessment
- Your responses to the questionnaire
Your responses will help NHS Forth Valley and the Scottish Government understand the needs of children and young people across Scotland.
This will support planning and improving services and support in the future.
Your information is handled in line with UK data protection laws (UK GDPR).
- NHS Forth Valley is responsible for your data – see our Privacy Notice
- Malvern Insight processes the data on behalf of NHS Forth Valley
- Your information is stored securely in the UK and used only for research and analysis
You have rights under UK GDPR, including the right to:
- Ask how your data is used
- Access your data
- Request removal of your data, where possible
If you have any questions about completing the questionnaire or the research, you can contact the ESSENCE-D team:
Email: support@essence-nd.com