Meeting of the Parliament

Meeting date: Thursday, November 2, 2017

Official Report 931KB pdf

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Diabulimia

The Parliament is still meeting, so I ask members of the public to leave the public gallery quietly.

The next item of business is a members’ business debate on motion S5M-08003, in the name of Annie Wells, on raising awareness of diabulimia. The debate will be concluded without any question being put.

Motion debated,

That the Parliament notes the work being carried out to raise public awareness of diabulimia, which is a little known, but extremely dangerous, eating disorder among people with Type 1 diabetes (T1D), who avoid taking their insulin in an attempt to lose weight; understands that, due to its unique nature, it is not officially recognised as a medical condition and that, consequently, many people do not receive the support that they need; notes that it impacts on men and women in Glasgow and across the country; understands that, in the UK, an estimated 40% of young women aged 15-30 with T1D have the condition, and notes the calls for a greater understanding of diabulimia and the provision of new and improved specialist support.

12:48  

I thank everyone who is going to speak in the debate. The reason for the debate is to raise much-needed awareness of diabulimia, an eating disorder that, although it is estimated to affect around 40 per cent of young women with type 1 diabetes who are aged between 15 and 30 and 11 per cent of teenage boys who have type 1 diabetes, is still relatively unknown.

The condition, which involves a person with type 1 diabetes omitting to take insulin in order to lose weight, has only recently gathered media attention; therefore, we are only just beginning to see the term “diabulimia” used in everyday language. The condition is not officially medically recognised, but it poses a very serious and real threat to its victims and has been called the world’s most dangerous eating disorder.

As it is an eating disorder combined with a chronic illness, diabulimia is often more complex to explain than more commonly known eating disorders such as anorexia nervosa and bulimia, which is why I will give full and due attention to explaining exactly what diabulimia is. In understanding what the condition is and sharing that knowledge with the people around us, we can go some way towards spreading awareness about it.

What is diabulimia? It is a condition that can affect people with type 1 diabetes, a lifetime auto-immune condition thought to affect about 30,000 people in Scotland. When people have type 1 diabetes, the cells in their pancreas are attacked, making it unable to produce insulin, a vital hormone that takes the glucose from our food into our bloodstream and delivers it to all the different cells in our bodies. Without insulin, our bodies cannot get the nutrients that they need. Consequently, when people are first diagnosed with diabetes, they have usually lost a lot of weight and often feel irritable and low.

On diagnosis, suffers will begin to inject doses of insulin calculated to match what they eat. Significantly, after taking insulin, sufferers often regain the weight that they had lost when they were ill, with their weight normally stabilising slightly above that of the healthy non-diabetic population. That is important to understanding diabulimia. It is owing to that weight gain that people who need insulin are often faced with a terrible choice: they can lose weight without having to diet by restricting their insulin or by not taking it at all. The signs that they have done that may not be obvious. With diabulimia, there is no need for food restriction, purging or exercise; there are none of the classic symptoms that are often related to eating disorders, so the condition can go unnoticed. Sufferers will also show no signs of weight loss—they can retain their normal eating habits and appear absolutely fine to their friends and family around them.

On a recent BBC Three documentary about diabulimia, a young woman with the condition sat down with her parents and told them that there had been periods where she had not taken insulin for up to two weeks at a time—something that they were, understandably, oblivious to, despite living in the same house.

The effects of not taking insulin are huge. Without insulin, the body is unable to take the nutrition that it needs from food and patients can suffer from premature loss of eyesight, pains and loss of sensation in their feet and hands and kidney damage. Eventually, they become blind, need dialysis or transplants, or suffer amputations.

The damage is cumulative rather than reversible—unlike ordinary starvation, which is mostly reversible over time if a person takes enough nutrition—so diabulimia has come to be known as the world’s most dangerous eating disorder. Statistics have shown that the 10-year mortality rate is 2 per 1,000 for people with diabetes and 7 per 1,000 for those with anorexia, but diabulimics face a much higher mortality rate of 35 per 1,000 people affected.

Speaking in the same documentary, Becky Rudkin, a woman from Aberdeen, spoke of her 10-year battle with diabulimia—a condition that resulted in her suffering three diabetic comas and from which she was eventually saved only after being sectioned.

Raising awareness of diabulimia is key to prevention. Work is being done. We are hearing about the condition more and more in the media and there are examples of good practice up and down the country. In Glasgow last year, Diabetes UK held a professional conference featuring a discussion on diabulimia. For many of the 3,000 people in attendance, that was the first time that they had ever heard of the condition.

The Eden unit is a specialist eating disorder service in Aberdeen. In the north of Scotland, diabetes clinicians and eating disorder clinicians are holding workshops together and establishing good permanent working links to support patients together. We should be building on that work.

As ever, there is always more to be done. Good practice exists. Health professionals and clinicians are fairly familiar with the symptoms of the condition and diagnosis occurs through the use of a specialist questionnaire and blood testing. However, once diagnosis is made, there is no official diagnosis code for diabulimia in the national health service framework and sufferers can be classified as having an eating disorder not otherwise specified or an atypical eating disorder. As a result, there are no NHS guidelines on how to deal with the issue and patients are not always treated with the interdisciplinary approach that is needed. That issue was raised by a family that has been personally affected and that I have been in contact with.

The treatment needed for a diabetic with an eating disorder is quite different from that for a person without diabetes. I therefore use this opportunity to urge there to be integrated thinking across the country when it comes to covering the two elements of care.

I thank members who have stayed to speak in this debate and who have shown their support for raising awareness of diabulimia. I am proud to bring the subject to the Parliament and I hope that the debate generates more interest in a condition that deserves greater publicity.

We require to tackle the issue head on, which is why I am pleased that sufferers are feeling more comfortable about coming forward to share their often harrowing stories.

Although diabetes is a condition that most if not all people are acutely aware of, diabulimia is a condition that might well exist in families in which relatives are completely unaware of the suffering of their loved ones.

Official medical recognition of diabulimia would be a major step forward in helping to raise awareness of the disorder and in securing better support for people who are living with the condition.

This is an important debate. I hope that we can talk about the subject again in the chamber.

I call Emma Harper. She will be followed by Mr Whittle—I would like to call him, but he has not pressed his request-to-speak button. [Interruption.] There you go.

12:55  

I congratulate Annie Wells on securing this important debate.

As someone who has type 1 diabetes, and as a registered nurse, I am grateful to have the opportunity to speak in today’s debate. It is important to emphasise that the debate is about raising awareness of a condition that has not been officially recognised. As co-convener, with Dave Stewart, of the cross-party group in the Scottish Parliament on diabetes, I appreciate that raising awareness of this eating disorder is crucial.

It is estimated that almost 35,000 people in Scotland are living with type 1 diabetes. Diabulimia is sometimes referred to as eating disorder diabetes mellitus type 1, or ED-DMT1. It is difficult to diagnose. It is an extremely complex condition, in which, over time, a person with type 1 diabetes either stops injecting insulin or restricts the amount that they inject, in an attempt to control their weight.

Why do people do that? The Diabetes UK website has the following list of factors:

“obsession with food labels

negative attention to weight

hypo bingeing

constant awareness of numbers

parent attitude towards Type 1 diabetes

shame over management

negative relationships with healthcare providers

difficulty losing weight due to insulin.”

As Annie Wells said, insulin is the protein that acts as a bridge to allow energy-supplying glucose in the blood to transfer into the cells, to support metabolism. When someone misses their insulin, blood sugar levels get really high, resulting in the metabolism of fat and then protein in the muscle, as the body needs an energy source. That is what leads to weight loss.

People who suffer from diabulimia do not just have physical health needs. They require mental health support, as they can experience a range of emotional effects, including depression and feelings of shame, guilt and low self-esteem, in addition to the everyday stress of life, which involves closely monitoring their diet.

This morning I spoke to one of the nurse specialists in the diabetes team in NHS Dumfries and Galloway, to find out how the board supports people who are suspected of having diabulimia. I was informed that NHS Dumfries and Galloway has a new dietician, who specialises in weight management and eating disorders. His remit will include referrals, assessment and support for type 1s with diabulimia. That is good news for folks in south-west Scotland.

We ask health professionals to look out for type 1s who are focusing on weight control, rather than blood glucose control. That is a sign that weight is the more important issue for the person.

Research suggests that women are at a higher risk of developing diabulimia. I was surprised to find out that an estimated 60 per cent of women with type 1 diabetes will have experienced a clinically diagnosable eating disorder by the age of 25. That is a profound statistic. The same research suggests that men with type 1 have a much higher drive to lose weight than their non-diabetic counterparts.

When I was doing research ahead of today’s debate, I found the BBC Three documentary, “Diabulimia: The World’s Most Dangerous Eating Disorder”. It is interesting, and anyone can Google it and watch it, to raise their awareness of the condition. Becky Rudkin, a young lady in the documentary, said that

“You don’t get a day off when you’ve got diabetes”,

and that there are

“a lot of numbers dictating your life, from calorie counting to watching the scales.”

I can identify with focusing on those numbers. There are carb numbers, blood glucose numbers and insulin unit numbers, and do not get me started on ketones. Becky Rudkin was correct to say that there are a lot of numbers dictating how one should manage one’s auto-immune disease to prevent complications and stay well.

I congratulate Annie Wells on providing a comprehensive overview of the causes and effects of the condition of diabulimia—great job; thank you.

13:00  

I am delighted to be able to speak in the debate, and I congratulate my colleague Annie Wells on securing time in the chamber to highlight and discuss diabulimia. I thank Diabetes Scotland for the briefing papers that it provided for the debate.

Although I am a member of the cross-party group on diabetes and am continually being educated on the disease by Emma Harper, diabulimia is not a condition that I was familiar with until fairly recently. I am of course aware of other eating disorders, such as bulimia and anorexia. Members might be surprised to hear that I have some experience of those conditions—nearly always in women—from the world of sport. I know of distance runners who, in their drive for excellence in track and field, have taken their dietary habits too far and have crossed into the realm of eating disorders. I have also had to help a person close to me for whom bulimia became a problem. That person, too, was immersed in sport. We would not necessarily imagine that such people would fall into that unhealthy cycle. I mention that because such conditions can easily be hidden.

Diabulimia is a condition that could have even more dangerous outcomes, because it is associated with a condition that, if not properly treated, can itself lead to life-threatening situations. People who suffer from type 1 diabetes have a constant need to control their blood sugar levels by injecting insulin. With proper monitoring, people with type 1 diabetes can live a very normal life in just about every way. I have mentioned previously that I am lucky enough to coach an athlete with type 1 diabetes who has medalled at Scottish level in the 1,500m.

The idea of controlling weight loss by reducing insulin intake is quite shocking. Especially shocking is the fact that, although the condition can affect men, 60 per cent of females with type 1 diabetes will have experienced a clinically diagnosable eating disorder by the age of 25, as Emma Harper mentioned.

As with most eating disorders, the foundation for diabulimia lies in a psychological issue—that of how one sees oneself and how one would want to look. Self-deprecation and a lack of confidence underlie it. That opens up a whole can of worms on the public perception of what look is desirable, which is predominantly driven by the media. Perhaps that is a debate for another day.

The holding of today’s debate gives the Parliament an opportunity to raise the issue of diabulimia and shine a light on it, which, we hope, will go some way to bringing it to the attention of the greater public. More important, the debate might enable us to reach out to those who are suffering from the condition and let them know that there is help out there for them and that they do not need to suffer alone.

The diabetes improvement plan indicated that the deployment of psychologists has made significant inroads into the issue in the areas of deployment. The extra support and training that have been made available to staff to increase the level of psychological assessment skills must be highlighted and their roll-out must be continued. Healthcare professionals, family and friends need to be aware of the tell-tale signs that could indicate the existence of diabulimia. I will not go into them, as they have already been mentioned. I recognise that Diabetes Scotland is calling for action to improve the recognition and management of the condition, and I hope that the debate contributes to that process of awareness raising.

I again congratulate Annie Wells on securing the debate, and I urge anyone who has questions about or needs advice on diabulimia to contact the Diabetes Scotland helpline, because the condition is one that no one should have to live with.

13:04  

I echo other members’ thanks to Annie Wells for her motion, which has allowed the debate to take place today. The debate gives MSPs the opportunity to play our small part in raising awareness of diabulimia—a condition that, as we have heard, is incredibly dangerous and poorly understood. Although I am my party’s spokesperson on public health and a member of the Health and Sport Committee, I confess that, until recently, my own understanding—like that of many others—was limited. I commend Diabetes UK and other charities for the work that they do to tackle the lack of awareness of the condition.

I also thank the BBC for the recent BBC Three documentary “Diabulimia: The World’s Most Dangerous Eating Disorder”, which was mentioned by Annie Wells and Emma Harper. It brought home the real-life human impact of diabulimia on three young sufferers and their families. If members have not watched the documentary, they should do so on the BBC iPlayer.

The lack of awareness of diabulimia makes identification and treatment more difficult and contributes to the stigma associated with the condition. Until we improve recognition and understanding, it will be hard to improve early intervention and provide better treatment.

Those who have diabulimia are faced with the dual burden of type 1 diabetes and an eating disorder. Serious physical and psychological symptoms are associated with both, and the interrelation between the two makes it a particularly high-risk condition. The potential physical complications of diabetes, such as diabetic ketoacidosis or damage to eyesight, kidneys and nerve endings, are significantly heightened by taking less insulin than required, and the possibility of doing lasting damage is high. Likewise, the hyperawareness of food and diet necessitated by diabetes can entrench and perpetuate the unhealthy relationship with food that underpins eating disorders.

In addition to the severe risks associated with diabulimia, its prevalence is also cause for serious concern. As the motion notes, research has found that up to 40 per cent of women aged 15 to 30 with type 1 diabetes have the condition. Although it is thought to be less common among men, men with type 1 diabetes have been found to exhibit a higher drive for thinness than their non-diabetic counterparts, putting them at risk of diabulimia. Indeed, a recent study in Germany found that 11.2 per cent of boys between 11 and 19 omit insulin to lose weight.

However, as diabulimia is not a recognised medical condition, it is all but impossible to gather accurate information about its prevalence and the risks that it poses. There are no reliable statistics for exactly how many people suffer from diabulimia, and deaths that are caused as a result of diabulimia are recorded as resulting from diabetes complications. That masks the scope of the problem and limits analysis of its impact and relevant trends.

If we are to improve the awareness, prevention and treatment of diabulimia, we need a better understanding of the condition. Recognising it as a specific medical condition is crucial to building a comprehensive view of who is affected by diabulimia and how it affects them. The complex nature of diabulimia can make it difficult to secure the right treatment. Too often, diabetes experts lack an adequate understanding of eating disorders, and mental health professionals may not be familiar with the challenges of diabetes. It is a unique condition that requires specialist treatment and a multifaceted approach.

National Institute for Health and Care Excellence guidelines on diabetes highlight the heightened risk of eating disorders that are faced by those who have diabetes; likewise, the guidance on eating disorders now has a sub-section on diabetes for all categories of eating disorder. Crucially, it includes a specific treatment plan for those who are taking the appropriate dose of insulin. It is encouraging to see the clinical guidelines beginning to reflect the reality of the condition, and I welcome the progress that is being made.

However, with many patients still struggling to get suitable treatment, there is still a great deal more to do. The Scottish intercollegiate guidelines network guidelines are yet to be brought into line with those from NICE on the matter, and there is still insufficient knowledge among healthcare professionals on how to identify and support people with diabulimia. That needs to improve.

To deliver informed and evidence-led treatment of diabulimia across Scotland, we must do more to facilitate collaboration between the two fields and develop expertise in the condition. By making that happen, and by raising awareness of the condition, we can play our part in ensuring that those who suffer from diabulimia get the treatment and the support that they need.

13:08  

I refer members to my entry in the register of members’ interests, particularly to the fact that I am a registered mental health nurse, holding a current registration with the Nursing and Midwifery Council, and to my honorary contract with NHS Greater Glasgow and Clyde.

I add my thanks to Annie Wells for bringing this important issue to the chamber for debate today. Most people will not have heard of diabulimia. It is not classified as an illness in either “The Diagnostic and Statistical Manual of Mental Disorders”, DSM-5, or the “International Statistical Classification of Diseases and Related Health Problems”, ICD-10, which are the internationally recognised classifications of disease and health-related problems. It is therefore not really surprising that most healthcare professionals might not have heard of diabulimia.

In preparing for today’s debate, I even found it difficult to find published research on diabulimia. However, I note that insulin omission should now be considered to be a clinical feature in the diagnosis of anorexia and bulimia. I sincerely hope that members are able to use today’s debate to increase recognition of the condition among not only the healthcare and research communities, but the public.

As we have heard from other members, the word “diabulimia” merges the words “diabetes” and “bulimia”. Type 1 diabetes is treated by regular injections of insulin to control blood glucose levels, and diabulimia is the term that describes the situation when someone regularly and deliberately reduces the amount of insulin that they take to control their weight and alter their body shape.

Diabulimia is not a household name, but it is a condition that might possibly affect a large proportion of our population. As we have heard, there are around 30,000 people who are diagnosed with type 1 diabetes in Scotland and the little research that exists on diabulimia suggests that a significant percentage of those people could be susceptible to being affected by it. Although Diabetes Scotland warns us to treat those figures with caution, one study has estimated that insulin omission has been reported in up to 40 per cent of people with diabetes. Other research from Germany suggests that more than 10 per cent of males between the ages of 11 and 19 omitted insulin to lose weight. I am sure that we all agree that those figures are alarming, and that could just be the tip of the iceberg with regard to the number of people who are affected.

What happens when someone with type 1 diabetes omits their insulin? Their blood glucose levels increase and hyperglycemia leads to polyuria—passing an increased amount of urine—which means that calories are excreted and not used, so the body is starved of energy. If hyperglycemia is untreated, it becomes life-threatening diabetic ketoacidosis, which, if left untreated, is fatal.

The longer-term effects of diabulimia are equally dangerous. Not taking enough insulin over a long period can shorten life expectancy. Other complications that are linked to diabetes such as retinopathy, neuropathy and nephropathy can occur earlier in life, and it can also lead to infertility. In cases in which diabulimia leads to severe diabetic ketoacidosis that is not treated, heart and organ failure occurs.

To anyone who is struggling with the illness, I make an impassioned plea that they reach out and talk to someone who they trust. There is help available and, with that help, they can get better.

I pay tribute to my Scottish National Party colleague Dennis Robertson, who served the Aberdeenshire West constituency with distinction between 2011 and 2016. Councillor Robertson is a true champion of raising awareness of eating disorders. During his time in this Parliament, he spoke on many occasions about his family’s experience of an eating disorder leading to the tragic death of his daughter. Despite Dennis no longer sitting in this Parliament, I am pleased that there are still members who will carry the torch to raise awareness of such devastating conditions.

I thank Annie Wells again for securing today’s debate on diabulimia, and I hope that, as a Parliament, we have been able to raise awareness of the condition so that many more people can come forward to get the help that they need to recover.

13:13  

I join other members in thanking Annie Wells for bringing this important debate to Parliament. I am pleased to respond on behalf of the Scottish Government.

We want to continue to drive improvements in mental health services and we are committed to ensuring that everyone, including people with diabetes, who needs access to high-quality mental health services has access to that care when and where they need it. In that respect, it is right that we recognise the efforts of all the people and organisations around Scotland who are involved in raising awareness about and treating eating disorders. We also want the best for people who are living with diabetes.

Raising public awareness about using insulin to control weight is important. I can assure members that the behaviours and risks that are involved are well known to clinicians, particularly those who work in diabetes and mental health services. However, I accept that there is always scope for greater awareness and understanding among professionals, and for the development of improved specialist support in response to that behaviour. We are working with NHS Scotland and partners to do just that, and to ensure that services are in place to meet the needs of people who are at risk, and who use insulin to control their weight.

Type 1 diabetes is more than simply a physical condition and, as with any serious chronic condition, there is often a psychological impact on those who suffer from it. Anyone who needs support should get it. Growing up with diabetes is challenging enough without the pressures and expectations of modern life, which is why we need to support young people with diabetes in particular and think about their health and social wellbeing. Young people need good support to manage their condition from childhood to adulthood.

As members have said, diabulimia is not a diagnostic term. However, it is important to recognise the behaviour of using insulin to control weight. Misusing insulin to reduce weight is clearly unhealthy and dangerous. It is important that people are equipped to better manage their own health.

In the long term, the dangers of underusing insulin to lose weight can be severe. As other members have said, chronic poor diabetic control can lead to loss of limbs, kidney damage, blindness, heart damage and other serious complications.

I recognise that determining the prevalence is difficult: it is hard to quantify the problem because people tend to hide it from family, friends, carers and clinicians. No matter how the behaviour of using insulin to control weight is officially recognised, what is important is that people who are demonstrating such concerning behaviour receive the care, help and support that they need, when and where they need it.

Our new mental health strategy aims to do just that. The guiding ambition of the strategy is very simple. We must prevent and treat mental health problems with the same commitment, passion and drive that we apply to physical health problems. The strategy also has a focus on improving the quality of care and ensuring equal access to the most effective and safest care and treatment. That is as important for people who are living with diabetes and those with eating disorders as for anyone else. Through delivery of the strategy we seek to improve access to psychological therapies and to treatments for children and young people. We are supporting the development of a digital tool to support young people with eating disorders.

We want to highlight the important role of liaison psychiatry in providing a specialist mental health service across a wide range of acute services and physical illnesses. We look to NHS Scotland and partners to improve liaison psychiatry services and mental health provision for acute patients. In line with best practice, NHS services should have local mental health support for people with type 1 diabetes. The SIGN guidelines for the management of diabetes recognise how common mental disorders are and give information on mental health assessment and treatment. The third sector, primary care and specialist services all have an important role to play in providing support and advice to people who misuse insulin in order to lose weight.

There are good practice examples in specialist services. For example, the NHS Lothian diabetes mental health service currently has a dedicated liaison psychiatrist and psychiatric nurse resource specifically for diabetes. I know that the service is highly valued by clinicians and patients and has demonstrated good clinical and financial outcomes. Among others, the service sees patients who have an eating disorder and who use insulin to control weight and those patients, when referred on, are seen as a priority by the eating disorder service at the Royal Edinburgh’s Cullen centre.

Individuals who are referred to eating disorder services can expect to receive the highest quality of care and support from the NHS. A wide range of community, hospital and specialist in-patient services are in place across Scotland to meet the needs of people living with an eating disorder. In 2009, I had the pleasure of formally opening the Eden unit in Aberdeen, which is a specialist NHS eating disorder in-patient unit serving the north of Scotland. The unit continues to provide valuable care and specialist support.

Emma Harper mentioned the work in NHS Dumfries and Galloway with the new dietician appointment, which will help to improve services for weight management and eating disorders in the south of Scotland. That is very important. Brian Whittle mentioned the Diabetes Scotland helpline and the involvement of Diabetes Scotland is hugely important. Brian Whittle also made an important point about the wider societal pressures that drive people of any age, but particularly young women, to want to look a certain way. That is a difficult issue to tackle.

Colin Smyth referred to the BBC Three documentary “Diabulimia: The Most Dangerous Eating Disorder”, which is very powerful and well worth a watch. Clare Haughey outlined the consequences of omitting insulin and paid tribute to former MSP, Councillor Dennis Robertson, who continues to champion the cause of tackling eating disorders.

We are very ambitious for continued improvement. I repeat my thanks to Annie Wells for raising an issue that many people know little about. That is one of the really powerful things about members’ business debates—they offer the opportunity to raise awareness. I hope that some of the media attention on this important issue will both raise awareness and encourage people who might have concerns or a problem in this area to seek help, because help is there and we want people to get the support that they need. I hope that I have been able to show the Scottish Government’s support for the work that is going on in this area. I thank everyone for their contributions to this important debate.

I have spent 18 years in the Parliament and I had never heard of diabulimia before, so it was important to raise the issue in a members’ business debate.

13:20 Meeting suspended.  

14:30 On resuming—