The Atlas of Shared Learning

Case study

Introduction of a monogenic diabetes services for the North West of England

Leading change

The Diabetes Specialist Nurse at Aintree University Hospitals NHS Foundation Trust led on the development and implementation of a programme of education and support across the North West of England. The specialist nurse’s new role supported local diabetes teams and other healthcare professionals to identify individuals with monogenic diabetes and ensure they receive a correct diagnosis and best treatment for their condition. This work has led to better outcomes for individuals in the region, better experiences and better use of resources.

Where to look

UK wide identification rates for monogenic diabetes remain low with a perception, expressed by some that a diagnosis of monogenic diabetes didn’t impact on the treatment of the individual patient.  This is however contradicted by the evidence base (Chakera 2015). The Diabetes Specialist Nurse saw lower than expected identification rates locally and therefore an opportunity to provide evidence-based education and support, to counter any myths that might be commonly held.

What to change

Prior to this work the North West of England did not have a regional specialist in monogenic diabetes, which was reflected in the lower than expected levels of patients identified as having the condition in the north west. The specialist nurse identified that there were only 116 individuals within the region with a confirmed monogenic diabetes diagnosis on a national database held by Exeter University, which was well below the estimated 767 cases expected to be seen in the North West.

Identifying this unwarranted variation in identification rates, and recognising the lack of specialists in monogenic diabetes regionally, the specialist nurse undertook further training in order to ensure the availability of knowledge, skills and understanding to support local teams to identify individuals likely to have a genetic cause of diabetes. Using this knowledge the nurse led on the development of a training programme for healthcare professionals across the region which was rolled out with good effect.

How to change

By contacting the local teams across the region the nurse offered to provide education and training to their teams as well as support in changing practice where needed.

The key aim of the programme is to increase recognition of monogenic diabetes amongst health care professionals and awareness of how better treatments impact on a patient’s health and quality of life.

Together with the lead Consultant from Aintree University hospital the nurse also developed a ‘Diagnosing MODY’ information sheet for staff to support the education being provided.

In the specialist Genetic Diabetes role of the nurse was proactive in engaging with local key stakeholders in order to spread the word about her appointment and role, the education they were providing and the support they offered.

Working with both secondary and primary care colleagues, the nurse has seen referrals into services increase and her relationships with other clinicians and their services grow. As a result they are also now recommending the service to their colleagues.

Following this the specialist nurse has worked with the Aintree University Hospital lead Consultant to establish 3-4 monthly monogenic diabetes clinics for families with these conditions to attend.  The clinics offer a one-off consultation with all the family where they can discuss the condition and receive counselling regarding genetic testing. The nurse supports discussions regarding current best treatments for the condition and for the individuals using the clinics as well as writing to the individual’s medical team advising them about the individual’s care and providing published information about their condition for the patient’s record.

The service and its activity are centrally monitored by the national monogenic diabetes team in Exeter and this allows for the specialist nurse and her team to both contribute to research as well as use it locally to improve practice.

Adding value

Better outcomes – In total the nurse has delivered 25 educational sessions and reached in excess of 375 healthcare professionals presenting to local healthcare teams and at regional and national conferences in the North West.  In excess of 239 referrals have been made into the new service for advice on monogenic diabetes and testing. Of these, 55 patients had an existing diagnosis of monogenic diabetes and clinicians were seeking support in managing the patients’ treatments, educating them about their condition and providing counselling and if wished screening of other family members. Eighty four patients have been referred for genetic testing with 42 testing positive and requiring further investigations and treatments.

For both the patients who have newly identified monogenic diabetes and for those where this has been ruled out, the service has been able to optimise the treatments of all these individuals based on the current evidence and available treatments.

Across the North West region the specialist service has transformed the lives of 2 people with Neonatal Diabetes who came off insulin after 25 and 40 years respectively.  Forty one people have been taken off the diabetes register and diabetes treatments as they were no longer classified as having diabetes. The improved diabetic control and quality of life many of the service users have experienced by receiving the specialist input and adjusting their treatments to suit their needs is a real success of the programme.

Better experience – The educational sessions have had extremely positive feedback from healthcare staff with 65% rating these sessions as very good or excellent. Staff and patient feedback has included:

The nurse has transformed the profile and management of patients with monogenic diabetes within our region. Now consultants have a knowledgeable and easy-to-access service leading to better, quicker diagnoses for their patients and this is reflected in the large number of referrals and huge regional interest in this area of diabetes.

I am so, so happy to have been able after all these years to come off injections and be treated by tablets I would never have imagined it was possible.

I am so grateful to everybody involved in this study as stopping injections has had a huge impact on my life. I feel better now my blood sugars are stable, I am not having the highs and lows (blood sugars) anymore and I have lost weight which I was never able to do before.

Better use of resources – By providing specialist education and training patients are being identified earlier with the condition and therefore accessing the correct treatment pathways sooner. The nurse is reducing the number in the local diabetes population who have been misdiagnosed and supporting their health by using better treatments for their condition.

Challenges and lessons learnt for implementation

It is important to ensure people are aware of monogenic diabetes so investing time in this stage is key to success of the programme.

Engaging with and gaining the support of local teams is extremely important to ensure they are able to identify and refer on appropriate people to the service.

Keeping staff education up-to-date is key to the success of initiatives and services such as this, so taking time and effort to maintain this is important.

The project is now a success nationally as well as locally. Genetic Diabetes Nurses are being identified and trained to increase awareness of monogenic diabetes and support healthcare professionals and families.

Find out more

For more information contact:

If anyone is interested in becoming a Genetic Diabetes Nurse within their own region they should contact Prof Maggie Shepherd