GIRFT Children & Young People's Neurodevelopmental Services Pathway Mapping Survey

Overview

Overview 

NHS England’s Getting It Right First Time (GIRFT) Programme for Children and Young People's Neurodevelopmental Services has developed the following questionnaire to systematically map the current services available for children and young people with neurodevelopmental needs in England in order to define current assessment and treatment pathways and provision to identify key steps, roles, information flow, challenges, and opportunities for improvement. 

The questionnaire is designed to collect both qualitative and quantitative data to generate benchmarked, actionable insights. While most of the required data is currently held locally by providers and Ingtegrated Care Boards (ICBs), it is not routinely submitted to national datasets. This questionnaire aims to address a significant national data gap and provide insights to inform efforts to optimise the pathway and enhance the experience for individuals and their families. 

The survey will initially be conducted as a one-off data collection exercise to support GIRFT peer-reviews.

NHS England GIRFT Programme – Information Governance Notice

Why are we collecting this data?

The results from the questionnaire will support NHS England’s duty under the Health and Care Act 2022 to protect and promote the interests of people who use health services by ensuring the provision of care that is economic, efficient, and effective.

GIRFT is a national programme overseen by NHS England that aims to deliver quality improvement in patient outcomes through peer-to-peer discussions with clinicians and managers in trusts and with wider local partners. It combines comprehensive data analysis with clinical expertise to review current practices and identify opportunities for improvement.

Results from the survey responses will be used for the following purposes only:

• To analyse identify current assessment and treatment pathways and provision;
• To identify key steps, roles, information flow, challenges, and opportunities for improvement;
• To develop key metrics for routine collection and submission to national sources for ongoing monitoring and improvement;
• To support GIRFT peer-review or implementation meetings in hospitals and networks;
• To inform recommendations in the GIRFT CYP ND national report and other GIRFT published clinical content arising from the programme.

The type and level of data being collected

The questionnaire will not collect patient identifiable information. The questions cover both quantitative and qualitative themes. Many responses are either yes/no or numerical, both of which GIRFT may use for benchmarking analysis.

The questionnaire may request the name and contact details of the person who submitted responses to allow GIRFT to follow-up for clarification of answers, and which will not be shared.

Who will access the data and how will it be further shared?

The results from the questionnaire will be stored within the secure IT environment managed by NHS England. Data will be accessed by a small number of GIRFT staff that have NHS England permission to use the data for NHS England purposes.

The secure NHS England IT data environment is regularly backed up and data will be stored until no longer required for the purpose of the implementation of the GIRFT programme. NHS England may also share the data internally with NHS England regional and national teams to support our wider efficiency and productivity programmes and delivery of all statutory responsibilities of NHS England.

Data may also be shared with broader NHS organisations as part of their ongoing work coordinating patient pathways and improving outcomes and productivity.

Data Quality and Validation

Before you submit your providers response, it is worth noting that NHS England will not validate any answers. Please ensure that you check the quality of your data (in terms of both accuracy and completeness) before submission.

Why your views matter

The questionnaire aims to supplement existing national data to facilitate clinician-to-clinician enquiry and support in order to improve service provision and patient care.

The GIRFT programme brings direct clinical experience in community neurodevelopmental service provision within paediatrics and CAMHS, as well as national specialist and research expertise in neurodevelopmental conditions. We fully understand the pressures faced on the front line and how the increasing demand for neurodevelopmental services has impacted service delivery.

The programme will map existing service provision and identify any difficulties that colleagues across the country are experiencing. This will enable us to share information, analyse data, problem-solve, and plan for future improvements to service provision, clinician well-being, and patient care.

To achieve this, honest rather than idealised responses are appreciated, to allow us to accurately gauge service provision and the support required. As local experts, your thoughts and experiences are critical in helping us understand the situation for you, your staff, and your patient population. Please provide as much detail as possible.