Type 1 Diabetes and Disordered Eating Services

Josh Newbury Excerpts

Wednesday 5th March 2025 Commons Chamber

[Josh Newbury (Cannock Chase) (Lab)]

It is a privilege to have secured a debate on a chronic but often misunderstood condition that affects many people across our country: the correlation between type 1 diabetes and disordered eating, known as “T1DE” for short. Separately, those two conditions are well-known and well documented, but together they exacerbate one another and can, in extreme cases, become a life sentence.

On an individual level, type 1 diabetes is a chronic autoimmune condition characterised by the pancreas being unable to produce insulin, meaning that those with the condition are required to carefully monitor their blood glucose levels and administer insulin. As we know, that delicate balance demands constant attention. Many of us have the luxury of going out for dinner and choosing a meal based on what we like the sound of—shamefully, in my case, often with too little thought to the sugar content, calories or how the body will digest it. For those with type 1 diabetes, however, that blissful ignorance simply is not an option. For them, life revolves around counting carbohydrates, monitoring blood sugar levels and injecting insulin. It is relentless. To put that into numbers, a child diagnosed with type 1 diabetes at the age of five faces up to 19,000 injections and 50,000 finger-prick blood tests by the time they are 18. Every moment of every day is a balancing act between food, activity and insulin.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Gentleman for securing the debate. I spoke to him outside the Chamber and he knows exactly what I am going to say. I have been a type 2 diabetic for almost 20 years, and I understand very well the fact that monitoring food intake is part and parcel of daily life. For those who suffer from an eating disorder, the constant food noise needs to be addressed by a professional, but diabetic clinics do not have the resources to deal with that. Does he agree that we need mental health support links for diabetics throughout the United Kingdom?

[Josh Newbury]

It is a pleasure to take my first intervention from the hon. Gentleman. I pay tribute to him for his campaigning on this issue and the personal experience that he brings to the House. I will come later in my speech to my experience of mental health services. I absolutely agree that we need to ensure that people with type 1 and type 2 diabetes have all the support they need for their mental health and managing their condition.

For some, type 1 diabetes morphs into a the deeper challenge of disordered eating—it is not difficult to see how that can happen. Given the strict attention to diet and nutritional information that type 1 diabetes necessitates, unhealthily restrictive and avoidant approaches to food can sometimes, at least to begin with, be indistinguishable from healthy diabetes management. As we know, in some cases, one side effect of insulin-based treatment can be weight gain. That leads some people with type 1 diabetes to realise that by restricting their insulin intake, or even stopping it altogether, they can essentially eat what they like and lose weight. However, the medical consequences of that are stark, including kidney problems, bone wastage, amputations, blindness and even death.

One of the most insidious aspects of T1DE is how difficult it can be to identify until its devastating consequences for both physical and mental health begin to manifest themselves. People suffering with T1DE often say that the isolation that comes with trying to navigate both a chronic illness and disordered eating is unimaginable for anyone who has not experienced it.

[Sarah Bool (South Northamptonshire) (Con)]

I thank the hon. Gentleman for securing this debate. As someone with type 1 diabetes, having been diagnosed only four years ago I completely understand the feeling of isolation just from having diabetes, let alone having to deal with disordered eating as well. Does he agree that we need to destigmatise both conditions, so that we can ensure the right support for patients?

[Josh Newbury]

I completely agree with the hon. Lady, and I thank her for the lived experience that she brings to this House, and for how candid she has been in sharing her experiences. I could not agree with her more.

Many people are falling through the cracks of a system that often fails to recognise the unique needs of people who live with both type 1 diabetes and disordered eating. While disordered eating in those with type 1 diabetes is sometimes referred to as “niche” or “rare”, it is becoming increasingly clear that it is simply under-recognised, and it is often missed. Evidence suggests that up to 40% of women and girls, and up to 15% of men and boys with type 1 diabetes experience some form of disordered eating. That is a quarter of the 400,000 people in the UK with type 1 diabetes.

[Alex McIntyre (Gloucester) (Lab)]

My hon. Friend makes the important point that this issue affects so many people. I have direct experience with a family member who had type 1 diabetes and what, back then, was referred to as diabulimia. They could not get support because the medical profession did not accept that it was a condition. Does my hon. Friend agree that part of tackling this issue is recognising its impact on families across the country, as that is the first step to ensuring that people get the support they need?

[Josh Newbury]

I agree with my hon. Friend. We need far better awareness of this condition, and better support for people affected and their families—I will come on to that a little later in my remarks.

As my hon. Friend said, a key issue we still face is the absence of internationally recognised criteria for T1DE, which hampers accurate diagnosis and classification, as well as collaboration and research. Within our NHS, pockets of fantastic practice have existed for a long time, but overall the current system often does not take account of the unique challenges faced by people with T1DE. Eating disorder specialists might lack the necessary understanding of diabetes management, while diabetes care teams may not be fully equipped to deal with the psychological aspects of eating disorders. The gap in knowledge and siloing of services means that people with T1DE sometimes come up against exclusion criteria and will end up disengaging from services at a critical point in their condition.

The need for joined-up, bespoke services is where the five NHS England T1DE pilot sites come in. Those trailblazing projects are combining diabetes and eating disorder support into one service, helping people to recover faster from T1DE and reducing repeated hospital admissions. That is where my interest in T1DE comes in, because in a past life I worked in the communications team at the Coventry and Warwickshire partnership NHS trust. When it was selected as one of the second wave of pilot sites, I had the privilege of working on preparations for the launch of the new service. Although I sadly moved on before the service was launched, that was a highlight of my years working for our NHS. What I learned about T1DE in those few months has stayed with me, as has the expertise and dedication of Dr Tony Winston and his team at the Aspen centre in Warwick, which is to be commended.

I pay tribute to CWPT and all the pilot sites for the pioneering work they have done to develop these services from the ground up, co-designing them with patients who at last are being heard and treated. Diabetes UK told me that it supported NHS England in the development of those pilots, and it is calling for long-term funding to ensure that best practice is shared and, most importantly, that support is offered by those services on a sustainable footing.

[Tom Collins (Worcester) (Lab)]

I congratulate my hon. Friend on securing this important debate. Type 1 diabetes is incredibly demanding to live with. It is a game of numbers, and as such it can be greatly helped by technology, which is developing rapidly. I wish to put on the record how important it is that the Government ensure universal access to such transformative technology for all who are insulin dependent with diabetes. Even if someone’s iPhone can be their pancreas, type 1 diabetes is unique in its constant psychological demands. It invades people’s lives socially as well as practically, with the result that type 1 diabetes combined with disordered eating is a perfect storm. Does my hon. Friend agree that it is important that we provide not just practical but emotional support that is integrated not just around an individual but also the family, to provide for the severe depths of need for this complex condition?

[Josh Newbury]

I completely agree with my hon. Friend’s comments on the need for technological advancement. I will come on to support for the family a little later in my comments, but it is critical to have a support network around people with T1DE.

To the credit of the last Government, they recognised the need for T1DE-specific services, but they allowed the initial two pilots, in Bournemouth and London, to close in April last year. Those of us who are members of the all-party parliamentary group on diabetes have heard stories about patients who have suffered as a result of that cliff edge.

Having inherited a highly uncertain and unfunded position, I very much welcome the Government’s recent announcement of a 12-month extension to the ongoing pilots. That will ensure sufficient patient numbers and, more importantly, safeguard vital services where they already exist. I encourage the Department of Health and Social Care to seek additional investment through the spending review. Now that services have been up and running for over two years, our focus should turn to building up to a national offer, so that people with T1DE in parts of the country like Staffordshire can benefit for the first time.

Another vital effort will be raising awareness of T1DE, particularly within general practice and eating disorder services, to ensure that people with both conditions receive tailored care. This is a call not solely for increased training for healthcare professionals, but for greater recognition of the issue within the system as a whole. The King’s Fund and Centre for Mental Health report, “Long-term conditions and mental health: the cost of co-morbidities”, shows that complications stemming from mental health illnesses in people with long-term physical illnesses increases the cost of care by an average of 45%.

In June 2022, a parliamentary inquiry into T1DE was launched. It was very ably co-chaired by Theresa May and Sir George Howarth, both then Members of this House. I acknowledge the work of the hon. Member for Harrogate and Knaresborough (Tom Gordon), who I have known for many years, who co-wrote the inquiry’s report during his time working for the Juvenile Diabetes Research Foundation, now Breakthrough T1D. The inquiry gathered evidence from experts, those with lived experience, researchers and voluntary sector leaders.

The report was launched in January last year and the key findings included the need for international diagnosis criteria, updated National Institute for Health and Care Excellence guidelines, the continuation of funding so that pilot sites can become centres of excellence, better data sharing, and a T1DE peer support offer to reach every corner of the country. I urge the Government to look at increasing awareness and training, particularly to give families and carers the tools and support they need to be able to play their part in early intervention and treatment pathways, as hon. Friends have mentioned.

Diabetes UK is currently funding a research project into the prevention of T1DE in children. It will test out an intervention designed to help parents and carers recognise signs of unhealthy eating behaviours. There is a lot of great work going on for us to build on.

To conclude, I thank those running the NHS pilot projects for all their work, Breakthrough T1D and Diabetes UK for the briefings they have given me, and all the Members who have contributed to the debate. We must do everything we can to support people with type 1 diabetes and disordered eating. The issue is not small or rare, and it deserves our attention in this place. By raising awareness, integrating services and providing support for families, we can help people overcome T1DE and lead healthier, happier lives.