Lack of training and education and poor integration between specialist services are preventing nurses from identifying and treating people with type 1 diabetes who have an eating disorder, a first-of-its-kind inquiry has warned.
A report published today by the parliamentary inquiry into type 1 diabetes and disordered eating (T1DE) called for essential changes to service provision to improve care for people with the condition.
“Nurses need in-depth training in how to spot the signs of T1DE early and how to manage it”
T1DE is an eating disorder specific to people with type 1 diabetes, which involves behaviours such as restricting insulin to control weight or body image.
Having this condition can increase risk of physical and mental health complications, including unstable blood glucose levels and depression and anxiety.
While T1DE is not currently listed as a formal medical diagnosis, studies have suggested it could be affecting up to 40% of females and 15% of males living with type 1 diabetes.
The parliamentary inquiry into T1DE was launched in June 2022 and aimed to spotlight and scrutinise the current funding and provision of T1DE services in the UK.
Chaired by MPs Theresa May and Sir George Howarth, it gathered evidence from healthcare professionals, researchers, charities and those with lived experience.
The inquiry published a report of its findings today, written by the Juvenile Diabetes Research Foundation (JDRF) charity, and has outlined key recommendations needed standardise approaches to T1DE.
Despite as many as 144,000 people being impacted by T1DE, the report found that there were several barriers preventing those living with the condition from receiving effective care which could, in severe cases, lead to loss of life.
It highlighted that there was insufficient training for healthcare workers in recognising and managing T1DE, which it said was “a concern”.
Similarly, it found that staff working across primary, hospital and specialist diabetes and eating disorder units had reported “being unconfident in treating T1DE”.
As a result, this was leading to patients “being referred back and forth” between specialist units that are designed to treat an eating disorder or type 1 diabetes, but not designed to treat T1DE.
During the inquiry, experts recommended that a framework for training and professional development of staff should be established, which included undergraduate registered nurse training in T1DE.
This framework should also include mention of what surveys and tools healthcare professionals should use to identify risk at an individual patient level.
The report noted that many eating disorder services were under-resourced and that workforce shortages across all professional groups had meant T1DE was “not currently prioritised”.
Dr Mariette Stadler, a National Institute of Health Research (NIHR) clinician scientist who contributed to the inquiry, called for “more diabetes specialist nurses who are trained in therapeutic interventions”.
However, she recognised that it was expensive to train such specialist staff, as they would “require supervision from other more senior clinical staff”.
Separately, the inquiry report highlighted the current “lack of integration” between diabetes and eating disorder specialisms, including service approach and collection and sharing of data.
One example was that eating disorder specialists often actively discouraged restriction of any types of food, while diabetic teams recommended calorie and carbohydrate counting, weight loss and using low fat products.
To address these issues, a standardised T1DE pathway for patients, which healthcare professionals can refer into, must be established, the report urged.
In addition, it noted the lack of consensus over nationally and internationally recognised diagnostic criteria for T1DE, which it explained had prevented healthcare workers from identifying the condition in the first place.
Despite some of the concerns, the report noted that the UK was recognised on the international stage to be at the forefront of research into addressing the diagnostic criteria for T1DE.
“The risks associated with T1DE can be fatal and so risk management is vital”
Currently, there are eight NHS England T1DE pilots which have combined diabetes and eating disorder support into one service.
These pilots have been found to help people recover faster from the condition and have also reduced repeated hospital admissions.
However, the report warned that there were concerns over the uncertainty of long-term funding for the pilots, particularly around whether local commissioners would see the costs of integrated provision as “too high to fund”.
As such, the inquiry has called for these T1DE pilots to be properly funded and extended to more services.
Other recommendations in the report included securing international consensus on T1DE diagnosis and updating guidelines to improve formal treatment pathways.
Meanwhile, the inquiry called for a comprehensive NHS workforce strategy and plan which encompasses recruitment, training and retention of mental health professionals specialised in T1DE.
Kerri Fleming, head of safeguarding and quality assurance at the eating disorder charity Beat, said: “Nurses are the most likely people to see people with type 1 diabetes and disordered eating in vulnerable situations, such as in A&E or within eating disorder teams.
“But the lack of a formal medical diagnosis of T1DE makes it very difficult for nurses to be certain of what they are treating and the best next steps.”
Ms Fleming called for quality training to be provided “so that nurses are equipped with the best knowledge and skills on how to assess for T1DE”.
She added: “The risks associated with T1DE can be fatal and so risk management is vital.
“Nurses need in-depth training in how to spot the signs of T1DE early and how to manage it, as well as best practice for medical emergencies relating to type 1 diabetes.
“Training should also emphasise the fact that people with T1DE can recover from disordered eating and that accessing support early is key.”
In addition, Ms Fleming urged for nurses working in inpatient eating disorder units to have access to “increased training around diabetes management”.
“This will help ensure that patients with T1DE needing a specialist eating disorder bed can access all the support they need,” she said.
If you are worried about your own or someone else’s health, you can contact Beat 365 days a year on 0808 801 0677 or beateatingdisorders.org.uk