Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if he will update the NHS website to include (a) hyperinsulinism amongst rare diseases and (b) what to do should you or someone you know exhibit symptoms of hyperinsulinism.

There are no current plans to update the National Health Service website to include information on hyperinsulinism. There are over 7,000 rare diseases often needing highly specialised input, and so the NHS website is not always the most appropriate platform to disseminate such information.

Congenital hyperinsulinism (CHI) is a rare and complex condition requiring specialised care through a multidisciplinary team led by an expert paediatric endocrinology service. CHI is present from birth, and a child usually starts to show symptoms within the first few days of life, although very occasionally symptoms may appear later in infancy. These patients may not be picked up in hospital after birth and will present often to their midwife or general practitioner with symptoms, and require referral to specialist care later on in infancy. Symptoms can include floppiness, shakiness, poor feeding, sleepiness, and seizures. It is important that anyone who is worried their child may be exhibiting these symptoms seeks urgent medical advice. Ideally, children with suspected CHI should be transferred to a specialist centre.

NHS England commissions this highly specialised service for CHI from three units: Great Ormond Street Hospital for Children; Royal Manchester Children’s Hospital; and Alder Hey Children’s Hospital.