Genetic testing to be rolled out across England for rare type of diabetes

Genetic testing on the NHS will spot a rare form of diabetes in thousands of people unaware they are living with the disease.

 In line with the NHS Long Term Plan’s committment to increasing access to genomic testing and improving diabetes care, NHS England is rolling out a new programme to support trusts across the country improve identification of monogenic diabetes.

Around 12,000 people in England are thought to have the condition, which if left undetected can mean patients struggle to manage glucose levels.

If untreated it can cause blindness, amputations and a greater risk of heart attack. The test can spot whether people have passed the affected gene on to their children.

Up to 280 staff will be trained to be experts in the condition over the next year.

The new project, run in partnership between the NHS England Diabetes Programme and the NHS Genomic Medicine Service, will provide remote training to support teams in hospital trusts to improve diagnosis.

The initiative will ensure training and support for a designated nursing and medical lead in each Trust, with a national virtual training package developed by an expert monogenic diabetes team at the Royal Devon and Exeter NHS Foundation Trust, and practical support provided by 15 specialist genetic diabetes nurses.

The Royal Devon and Exeter NHS Foundation Trust is part of the NHS South West Genomic Medicine Service Alliance, one of seven regional NHS Genomic Medicine Service Alliances launched in the last year to transform how genomics is used in mainstream healthcare to improve outcomes for patients.

Since 2002, experienced Diabetes Specialist Nurses have been trained by the Exeter team to become regional experts who educate other professionals and coordinate patient care.

Most patients newly diagnosed with monogenic diabetes will be able to manage their condition better by taking tablets or by diet to control their glucose levels instead of having to endure often unnecessary and time-consuming insulin injections.

Professor Partha Kar, NHS national speciality advisor for diabetes, said:

“We are already making progress against the goals set out in the NHS Long Term Plan for better diabetes care, and the rollout of this programme will mean more patients across the country will benefit from access to specialist genetic testing and optimised treatment.”