Indicators in NHS structure, for example, commissioning indicators—obesity and mental health.

Clinical Service Quality Metrics (currently in development)—asthma and diabetes indicators.

Gaps: holistic metrics.

Challenges: information governance and data linkage.

Priorities: metrics which focus on what matters to children and young people and their parents/families/carers.

Child Health Profiles—headline indicators for population health distributed to local authorities on an annual basis—comparability and benchmarking.

Early year profiles—trend data.

Health visiting indicators.

Healthy behaviours in young people summaries.

Public Health and NHS Outcomes Frameworks for children (comparability, trends and correlations).

Hospital utilisation.

CYP mental health and well-being system profiling too: indicator list (prevalence data, estimates).

Recent data sets: CYP data set (linking community and acute hospital data sets).

Gaps: dearth of data for young people.

Challenges:

1. Increase awareness of data among people who need it most.

2. Restrictions on data that can be used and ability to link data sets.

3. Some of them are descriptive—may not be valid for understanding trends or making comparisons.

4. Limited to local populations, which limits comparisons. 

Priorities: more data about/for young people.

Bed occupancy for paediatric intensive care beds.

CQC children’s survey.

Community Data Set.*

Emergency readmission rates.

Inflammatory bowel disease.*

Immunisation.

Late neonatal mortality.†

Maternity and Children’s Data Set.*

Management of sepsis.*

Mental Health Services Data Set.*

Multiple emergency admissions for long-term conditions (asthma, epilepsy and diabetes).

National congenital heart disease audit.*

National neonatal audit programme.

National paediatric diabetes audit.

Never events.

Non-elective neonatal readmissions.†

National Reporting and Learning System notifications.

Paediatric epilepsy audit.*

Paediatric intensive care audit.

Paediatric surgery indicators.*

Perinatal mortality.†

Safety thermometer.

Serious incidents.

Whistleblowing.

Gaps/problems: we expect clinical services to be engaged in well-planned clinical audit and we expect them to monitor their outcomes, to compare them with expected results and to use them to drive improvements.

Challenges: there are not enough paediatric audits as yet to compare outcomes with expected results for a wide range of common conditions.

Priorities: building partnerships with bodies that can develop better outcome benchmarking tools.

Quality Outcomes Framework for general practice: asthma, diabetes, smoking cessation support.

CCGs: diabetes care process and pregnancy and neonates.

In development: CYP with mental illness.

Gaps: there are few indicators for paediatrics due to focus of work to date.

Challenges: data—risk of measuring what we always measure because we can measure it.

Priorities: largely driven by Quality Standards work programme, but open to working with key partners.

All Scottish NHS boards ‘signed up’.

Full measurement plan for quality improvement data.

Monthly data submission.

Biannual data self-assessment by Scottish units with accompanying feedback from national team at HIS.

Stakeholder engagement strategy with regular learning sessions/networking events/WebEx schedule.

Achievements of the paediatric care programme so far include the development of a national system-wide Paediatric Early Warning Score and the development of the Paediatric Sepsis Six.

Gaps:

1. Capacity and capability at board (local trust) level.

2. Lack of national electronic data system.

3. Benchmarking.

Challenges: lots of units focusing on process measures without monitoring associated outcome measure.

For all children and young people, especially regular patients with complex and lifelong conditions, it is vital a meaningful framework is able to follow their journey and progress in a way that can be easily accessed by all agencies who support their needs.

It is right that each young person has a tailored plan to ensure their own requirements can be met, which is as accessible to them as it is to any clinician who has access to their information.

Any feedback given has to be equally justified by the difference it will have on the service and to have a meaningful approach in improving quality of a young person’s own outcomes and for their peers.