Paediatric Gastroenterology, Hepatology and Nutrition UK National Census 2021 - report

On this page you can download the full report below and access a summary of the key findings and recommendations. A supporting appendix of full audit results will be available soon.

The PGHAN Audit Steering Group would like to thank all their colleagues across the UK who have put time and effort into collecting and submitting information for the audit whilst continuing to provide care to children, young people and their families during the incredibly challenging circumstances of the COVID-19 pandemic.

Key findings and recommendations

The findings of the report make a compelling case to formalise networks for the provision of PGHAN services. This is essential for the equitable delivery of high-quality care across the UK.

PGHAN Audit Steering Group

PGHAN Audit report findings and recommendations were identified by members of the PGHAN Audit Steering Group. Ten key recommendations across five domains of care are set out for commissioners, NHS Health Boards and Trusts and patients and families to improve the provision and quality of care provided to those with gastrointestinal, liver, and nutritional conditions and disorders.

These five domains are:

1. Operational Delivery Networks
2. Workforce Requirements within a Network
3. Network Governance
4. Provision of PGHAN Care within the UK
5. Recovery of PGHAN Services following the COVID‐19 Pandemic

Our audit data demonstrates considerable variation in the level of provision by specialist centres with respect to on-call arrangements for specialist care or advice, paediatric endoscopy services, network governance arrangements, and staffing levels between centres, and regions, within the UK.

Dr Edward Gaynor and Dr John Fell, Consultant Paediatric Gastroenterologists, PGHAN Audit Clinical leads

#VoiceMatters

The #VoiceMatters section of the PGHAN Audit report, prepared by the RCPCH Children & Young People Engagement team and RCPCH &Us network, raises the views of children, young people and their families. These can be used to inform practice and discussions within clinical teams and Multidisciplinary team (MDT) colleagues, as well as improve understanding and awareness of patient and family experiences.

There are not enough specialist doctors, here and at another big hospital. My GP doesn’t understand about the gastro condition, so I had to research and give information to the GP.

RCPCH &Us

My gastro service is good at solving the problem, they forward you on to alternative clinics and follow up quickly.

RCPCH &Us

Background

From 2020 to early 2021, BSPGHAN and RCPCH conducted a national audit to provide a comprehensive understanding of the provision of PGHAN services in the UK. The audit was based on quality standards produced jointly by both organisations in 2017.

Setting the quality standards for paediatric services 

In 2010, RCPCH set out standards for high quality, safe and sustainable acute general paediatric services in its publication, Facing the Future: Standards for Acute General Paediatric Services.

As this document was being revised, paediatric clinical directors highlighted the interaction between secondary and tertiary services was highlighted as an area of concern where they would welcome further guidance.

BSPGHAN and the College particularly recognised that areas of improvement were required in gastroenterology, hepatology and nutrition to ensure that children and young people receive timely, high quality services as close to home as possible. They subsequently worked together to develop and publish the Quality Standards for Paediatric Gastroenterology, Hepatology and Nutrition in 2017.

Developing the national audit

Following the publication of these quality standards, BSPGHAN and the RCPCH conducted a national audit in 2020 to provide a comprehensive understanding of the provision of PGHAN services and to:

• improve health outcomes and the quality of life for all infants, children and young people receiving care for gastroenterology, liver or intestinal disorders throughout the UK
• identify any unwarranted variation in care and ensure that equitable services are available for all infants, children and young people in the provision of gastroenterology, hepatology and nutrition services across the UK audit paediatric centres against measures which align with nine quality standards focusing on providing specialist gastroenterology, hepatology and nutrition services in the UK
• understand how paediatric services are providing care to local populations and whether system leaders are planning and commissioning services effectively in networks
• inform the RCPCH, its members and healthcare professionals of future work that is needed to improve the quality of care provided to infants, children and young people with PGHAN needs.

The PGHAN Audit was launched by the audit clinical leads and project coordinator at the BSPGHAN annual general meeting in January 2020​​​​​​, pictured below.

Collecting the data

The audit received 107 data submissions by the data entry deadline of 28 February 2021 from centres within NHS Health Boards and Trusts across the UK as follows:

• 27 Self-Declared Gastroenterology and Nutrition Specialised Centres
• 3 Self-Declared Hepatology Specialised Centres
• 77 Non-specialist Centres

The audit steering group

The PGHAN Audit was delivered by the Audits Team at the RCPCH, and its methodology and plan of work is overseen by a steering group comprised of representatives of the following organisations:

• British Society of Paediatric Gastroenterology, Hepatology and Nutrition
• British Association of Parental and Enteral Nutrition
• Coeliac UK
• Crohn’s & Colitis UK
• Crohn’s in Childhood Research Association

The audit steering group was chaired by Dr John Fell, Lead Paediatric Gastroenterologist at the Chelsea and Westminster Hospital and Dr Ed Gaynor, Consultant in Paediatric Gastroenterology, Great Ormond Street Hospital (GOSH) as co-chair.