Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they have taken (1) to offer children with Congenital Hyperinsulinism continuous glucose monitoring (CGM) in order to avoid Hypoglycaemic incident and subsequent neurological harm, and (2) to ensure equality of funding for children with Hyperinsulinism regardless of geographical location in England.
NHS England is responsible for commissioning Highly Specialised Congenital Hyperinsulinism (CHI) Specialist Centres in London, Manchester, and Liverpool to provide a range of treatments for this condition. Care includes long-term monitoring of the glycaemic status of children with CHI to avoid hypoglycaemic incident and subsequent neurological harm. Additionally, the Specialist Centres engage with parents in the long-term care of children who also receive regular follow up at the centres with the involvement of a patient’s local healthcare provider to support care closer to home management. All patients with CHI are referred to and have access to these centres.
The Department has not had specific discussions with NHS England on Congenital Hyperinsulinism. Whilst no assessment has been made for prioritising early diagnosis thereof, it is acknowledged by the National Health Service and by practitioners involved in routine paediatric health assessment, surveillance and subsequent treatment, that the early diagnosis of CHI is important and that children usually start to show symptoms of CHI within the first few days of life, although very occasionally symptoms may appear later in infancy. The Specialist Centres also provide advice, education and support to local health care providers on CHI and the management of patients with CHI.