These standards aim to reduce variation in care, ensuring equitable services, and to improve the health outcomes and quality of life for all infants, children and young people with gastroenterology, liver or intestinal disorders in the UK.
The nine standards are built around the requirement for specialist gastroenterology, hepatology and nutrition services to be provided within clinical networks.
- Trusts and health boards that provide paediatric gastroenterology and nutrition services work within a clinical network.
- All hospitals have access to specialist gastroenterology, hepatology and nutrition advice by telephone with adequate capacity for transfer to the tertiary centre 24 hours a day, 7 days a week to ensure access to services are equitable and designed across geographical, political and NHS/health board boundaries through the network.
- Transition planning is documented and agreed by the child, the paediatric team and adult services. Transition policies and pathways are published on trust and health board websites.
- Paediatric endoscopies must be undertaken in a child-friendly environment with appropriate facilities. For children presenting in an emergency, timely access to endoscopy must be available through clear and agreed pathways within the network.
- Children with suspected inflammatory bowel disease are seen by a specialist service within four weeks in an age appropriate facility by a multi-disciplinary team and reviewed regularly as required within the network.
- Children who require specialist dietary treatment have a named paediatrician and access to a specialist paediatric dietitian as part of a multi-disciplinary team to ensure their nutritional requirements are met.
- Children receiving inpatient parenteral nutrition are reviewed at least once a week by a multi-disciplinary nutritional care team to include a paediatrician with experience in parenteral nutrition, paediatric dietitian, parenteral nutrition pharmacist and children’s clinical nurse specialist with knowledge and experience in nutrition support.
- Children receiving home parenteral nutrition (HPN) are cared for by an intestinal failure or designated HPN unit with a multi-disciplinary nutrition team.
- The gastroenterology network is linked to a lead specialist centre for hepatology with agreed patient pathways, access to specialist hepatology advice through their on-call rota, outreach clinics and shared care arrangements.
- Improving clinical outcomes and reducing variation in care will be best progressed and facilitated by services being commissioned, planned, delivered and evaluated through funded clinical networks.
- Providing telehealth services for patients and families will enable regular monitoring of patients who have long-term health needs and will improve access to care for patients who live in geographically remote locations.
- Networks will facilitate the co-location of other subspecialties in order to manage the complex needs of patients with gastroenterology, liver and complex nutrition needs.