A national training scheme, funded by the programme

Between 2014 and 2016, the Genomics Education Programme (GEP) provided funding for a training programme, co-ordinated by a centre of excellence in diabetes in Exeter, to support the development of a national network of genetic diabetic nurses.

The funding built upon more than a decade’s work, led by Professor Maggie Shepherd, to train specialist diabetes nurses to support patients with a rare form of diabetes known as MODY (maturity-onset diabetes of the young).

MODY, also known as monogenic diabetes, accounts for around 2% of diabetes cases, but is often misdiagnosed, resulting in the wrong treatment for the patient and poorer health outcomes.

The work undertaken as part of this training programme has improved awareness of monogenic diabetes across the country, leading to increased diagnoses and ensuring appropriate treatment for these patients.

Training and cascading

The programme continues today and uses the model of ‘train the trainer’, embedding specialist knowledge across a network of genetic diabetes nurses who then provide training to the wider workforce. The training model works as follows:

  1. Specialist workforce training: A two-day session on genetics and MODY for specialist nurses, followed by 1.5 days’ CPD training every four months.
  2. Clinical competency test: Nurses are assessed by the lead trainer and the specialist team in Exeter to make sure they meet the training competency standards for the programme.
  3. Cascading information: Trained genetic diabetes nurses (GDNs) cascade information about MODY to other healthcare professionals across their region through presentations and case discussions.
  4. Improving patient care: GDNs liaise with local healthcare teams to facilitate appropriate information and treatment for people with MODY and help co-ordinate genetic testing for family members.

There are more than 20 GDNs across the UK who run specialist monogenic diabetes clinics in collaboration with diabetologists, thus improving the care offered for patients with monogenic diabetes and their families.

Successful outcomes

This project has delivered a number of successful outcomes in improving patient care and saving costs.

Since the start of the GDN network in 2002, hundreds of patients have received a confirmed genetic diabetes diagnosis. Many of these patients were initially diagnosed as having Type 1 diabetes and were then able to stop insulin injections and transfer to sulfonylurea tablets. Along with the benefits of this for the patient, it saves the NHS an estimated £23,000 per patient per lifetime in reduced treatment costs.

To learn more about the work and achievements of the genetic diabetes nurses training programme, please visit the Diabetes Genes website.

Prof Maggie Shepherd on the impact of a genetic diagnosis on patients

What is MODY?

MODY stands for maturity-onset diabetes of the young, and is a rare form of diabetes. MODY is also called monogenic diabetes, because it is caused by a change in a single gene.

MODY affects 1%-2% of people with diabetes, although it is often misdiagnosed as Type 1 or Type 2 diabetes.

Typically, monogenic diabetes:

  • develops before the age of 25;
  • runs in families from one generation to the next; and
  • may be treated by diet or sulfonylurea tablets and does not always need insulin treatment.