Eating Disorders Awareness Week 2024

I welcome the opportunity to lead this debate on eating disorders awareness week 2024, which took place from 26 February to 3 March. The theme of this year’s week is avoidant/restrictive food intake disorder, which is also known as ARFID. It is a largely unknown and misunderstood eating disorder, which can have serious consequences for health if it is left untreated.

The number of people who are affected by ARFID is unknown and treatment is not currently available nationwide. Many people with ARFID report difficulty in accessing treatment and support in Scotland and across the United Kingdom—I will come back to that.

I thank colleagues on all sides of the chamber who have supported my motion, which has allowed the debate to go ahead. I also thank the eating disorders charity Beat for the excellent work that it continues to do to support those who are at risk of, or living with, an eating disorder. That work includes supporting family and friends.

Around 1.25 million people across the UK and about one in 50 people in Scotland currently live with an eating disorder, and the numbers increased during the Covid-19 pandemic. Types of eating disorders include binge-eating disorder; bulimia; anorexia; other specified feeding or eating disorders, or OSFED; and avoidant/restrictive food intake disorder, which we are discussing today. Another, very dangerous, eating disorder is diabulimia, which occurs when people with type 1 diabetes deliberately omit their insulin in order to control their weight.

Eating disorders have high mortality rates, and anorexia has the highest mortality rate of any mental illness. One in six people with a binge-eating disorder has reported trying to end their life. People with eating disorders typically develop severe physical health problems, and it has been estimated that their overall quality of life is as low as it is for those with symptomatic coronary heart disease or severe depression. Without early intervention, many people become unable to participate in education or employment. However, recovery is possible. Access to the right treatment and support is life changing, and early intervention provides the best chance of recovery.

The key symptoms of eating disorders include worrying excessively about weight and body shape, avoiding social situations where food may be involved, frequently visiting the toilet for prolonged periods after meals, and a person not being up front about the food that they may be consuming. It is important for family members, friends and colleagues to be aware of those signs. Research has shown that there is a link between eating disorders and depression, low confidence and low self-esteem.

Today, however, I will highlight specifically this year’s theme: ARFID. ARFID is a condition that is characterised by the person avoiding certain foods or types of food, having restricted intake in terms of the overall amount eaten, or both. Beat has experienced an increase in requests for support for people who are living with ARFID. One of the people who have been impacted by ARFID, Harriet, summed up the impact of the condition by saying:

“A lot of people thought I was just being picky and friends would often get very offended when I went round to their houses for dinner and I wouldn’t eat anything. Less than five people outside my immediate family knew about my condition. When I explained it wasn’t to do with losing weight, it was because of anxiety, I was told to get over it.”

That example shows exactly why we need to put the spotlight on ARFID: so that people are aware of it, and so that we can break down the stigma and support people to access treatment.

People of any age can have ARFID. The condition is linked to anxiety, attention deficit hyperactivity disorder and autism. People with ARFID may be sensitive to the taste, texture, smell, appearance or even the temperature of the food in front of them.

In March 2021, the Scottish Government completed a national eating disorder service review. The “Scottish Eating Disorder Services Review—Full Report” includes a total of 15 ambitious recommendations that focus on ensuring that all those who are affected by eating disorders receive timely and appropriate care and support. Those recommendations include better co-ordination of national activity and data collection; national availability of self-help resources, which should be available to everyone in Scotland, at any stage of life; and a focus on early diagnosis, with the aim of prevention. It is welcome that an implementation group has been set up to review the timescales for, and the cost of, implementing the recommendations, and that three sub-groups have been created: a training group, a standards group and a data group. One of Beat’s key policy asks is for the 15 recommendations to be implemented in full. I would be grateful, therefore, if the Minister for Social Care, Mental Wellbeing and Sport could, in responding to the debate, provide an update on the implementation of those recommendations and comment on when they will be implemented in full.

Ahead of the debate, my office contacted NHS Dumfries and Galloway and spoke specifically with the dietetics team. The team has a specific dietician who works with and focuses on those people who are living with, or at risk of, developing eating disorders. I heard that because of the rural nature of Dumfries and Galloway, some people who are at risk of developing an eating disorder may not be picked up as easily, or may be reluctant to access support because of the travel that is involved in attending appointments. In addition, because of the stigma around eating disorders, many people report that they feel ashamed even to access treatment and support.

Although the situation has improved through a move to virtual appointments, people who live in rural areas still have issues in accessing eating disorder support services. We need to continue to support them to access those services, so I ask the minister to ensure that rural areas are included in the Government’s approach. In addition, I press the Scottish Government to ensure that eating disorders are included in the mental health stigma reduction strategy, and that all possible action is taken to combat eating disorder stigma.

Anyone who has an eating disorder, or who thinks that they may be at risk of one, can access judgment-free support from Beat. The helplines are free to call from all phones. Anyone who is affected by an eating disorder—including families, carers and anyone else who provides support to someone with an eating disorder—can call 0808 801 0432 or email Scotlandhelp@beateatingdisorders.org.uk, or contact Beat’s helpline advisers via a one-to-one webchat. The helplines are open from 3 to 8, seven days a week, 365 days a year.

I appreciate the opportunity, once again, to lead this important debate, and I reiterate my ask of the minister for further detail on when the review group’s recommendations will be implemented. Once again, I thank Beat and all the national health service staff across Scotland for the vitally important work that they do each day. I look forward to hearing the contributions from other members.

I thank my colleague Emma Harper for bringing this important debate to the chamber. I also thank Beat, which is an amazing organisation that has for many years been amplifying the voices of those who are dealing with eating disorders, and which has provided us with information and has led on eating disorders awareness week 2024.

I want to make special mention of ARFID Awareness UK, which is the UK’s only charity that is dedicated to raising awareness of avoidant/restrictive food intake disorder. Hearing comments such as:

“She’ll eat when she’s hungry”,

“If that was my kid, she’d clear that plate”,

“If she doesn’t eat it, heat it up again and give it to her for breakfast”,

“You’re spoiling her and you’re making a rod for your own back”,

“Just get her telt”,

“In my day, a skelp is what you would have used to fix this”

and

“She’s just being picky and you need to put a stop to this fussy nonsense”

made me dread interacting with anyone as a family unit when food was involved, as it became ever more clear that my youngest was developing a serious aversion to the majority of foods that we all enjoy daily.

I can trace it back to the moment when, as a three-year-old, she choked a wee bit on a homemade chicken nugget. Almost overnight, she went from enjoying a variety of foods to tolerating only a handful. There was a distinct link to anxiety and sensory issues, and with what we later understood to be neurodiversity. At times, her food intake was limited to only a couple of items, mostly beige and carbohydrate in nature.

After a year, our general practitioner advised us that our child had selective eating disorder and that there was not a lot that we could do except to offer her a wide variety of things in the hope that one day, magically, she would start to eat again. In retrospect, that approach often caused more harm than good, as new foods were met with such suspicion and terror that anything relating to eating had any scintilla of enjoyment removed, leaving a highly distressed child and two highly distressed parents.

We stopped eating out. I dreaded parties and social events, as I knew that well-meaning folk would try to coax her into trying the lovely food that they had prepared, while casting aspersions on our parenting abilities with passive-aggressive comments. In a sea of judgment, my mum was the only person who kept saying to me, “Elena, if the wean is only going to eat your lentil soup and bread and nothing else, just feed her that with a smile and love and ignore what everybody else thinks. It’s just background noise.”

My child stopped eating at school when she was not allowed to bring in crackers and peanut butter—one of her staple safe foods—given the risk of allergies among other children. After protracted negotiations, she was allowed to have vegetable soup and bread from the canteen, and she would not be forced to eat a main course. Maybe 200 calories at most would see her through the school day. She avoided the canteen totally while she still attended secondary school, as the smells and the noise of people eating overwhelmed her.

At nearly 16, she now has a slightly longer list of safe foods, including her much-loved plain udon noodles and bubble tea, but we often lose some of those when recipes change or when something is no longer made, or when she has eaten a certain food every single day for a whole year and just cannot face it any more. She is slight and often exhausted, and the health service still does not really know how to help her, or the thousands of other young people who are living with ARFID.

I know that the Scottish Government has a special focus on eating disorders, and I hope that the minister will say a wee bit about how it plans to help those like my Sophie. We must ensure that every layer of our health service, from health visitors to GPs and child and adolescent mental health services, understands the needs of those who are living with ARFID. We also need to educate the public and those working in our public services, including our schools, to stop needless pressure and guilt being laid at the feet of parents who are doing their level best just to get enough calories of any kind into their children. The condition really is far more serious than is suggested by the “fussy” label with which children are often saddled.

I congratulate my friend and colleague Emma Harper on securing a debate on this very important subject, and I commend Elena Whitham for her very moving personal contribution.

It is very welcome that, during eating disorders awareness week 2024, we have this dedicated time in the chamber to speak at length about it. This year, in particular, when the theme is avoidant/restrictive food intake disorder, or ARFID, raising awareness is absolutely key. That includes awareness that ARFID is real and not just in your head, and awareness that if you have any sort of eating disorder, there is help out there for you.

When, ahead of the debate, I searched for “ARFID” and “eating disorders awareness week”, I was particularly pleased to see that the first thing on Google was not a result—it was just the line:

“Help is available”,

and underneath that, it said:

“Speak with someone today. Beat Eating Disorders.”

Following that, there was a range of helplines, along with other contact information. That sends a message to folk. I hope that it gets to those who need to see it, because those helplines and the Beat website are some of the best places that people can look to get help.

If members go to Beat’s website, they will see—among so much helpful information, details of where to get support, training resources and much more—a section entitled “Your Stories”.

One of those stories, “Frankie’s Story”, outlines exactly why this year’s theme of ARFID is so important. I will share some of Frankie’s story. Frankie says:

“I didn’t realise I even had an eating disorder until I discovered the ARFID page on Beat’s website. I’d felt so scared of food for a long time and yet, because I wasn’t worried about my weight, neither me nor anyone else could pinpoint why I had felt like this. It had been suggested I had PTSD or OCD, but nothing quite explained the way I felt about food. When I finally found out about ARFID, you might think a diagnosis would’ve scared me more. But the truth is, I had a name for what I was feeling, and I found out that it’s actually really common.

My eating disorder means that I’m scared of eating in case I’m ill and doesn’t relate at all to my body image physically. It was really hard when I had this diagnosis (later by a professional too) but at least with my diagnosis I could now put it into words and share my experiences with people in my family.”

Frankie goes on to say:

“Living with an eating disorder is really tough. It makes everyday harder and over-thinking comes into play at all times. I’m still in the process of recovering and whilst I’m so thankful for everyone who has helped me over the years, I also want to say well done to me”.

I finish up on a similar note to Frankie’s. Well done to Frankie for their progress and for openly talking about their ARFID to help to raise awareness. Well done also to Beat for all the excellent work that it is doing across Scotland to support folk and raise awareness.

To anyone who is worried about an eating disorder, whatever it is—whether it is ARFID, anorexia, bulimia, stress eating or something else, or you are just not quite sure—well done for recognising that. Please consider the offers of help that are available from Beat and elsewhere, which can support you on your journey to overcoming the condition.

I commend Emma Harper for securing the debate, which is now an annual debate to mark eating disorders awareness week. As always, I pay tribute to my friend Dennis Robertson MSP, who kicked off our having these debates, which allow us to raise awareness about eating disorders and about the terrible impact that they can have on people who are diagnosed as having them, and on all of us who have family, friends and loved ones who live with eating disorders.

As has been said, the focus of this year’s eating disorders awareness week is avoidant/restrictive food intake disorder. We have heard that ARFID is a condition that is

“characterised by the person avoiding certain foods or types of food, having restrictive intake in terms of overall amounts of eating, or both.”

Ms Whitham’s powerful speech went into real depth about the difficulties that people face, but I want to reiterate a point that has been made before and that cannot be repeated too often: ARFID is not “fussy eating”. We have to get away from some of the old-fashioned ideas that are still out there.

I know that the Scottish Government has made a commitment to ensure that people with eating disorders get the support and treatment that they need. When I was a minister, I established the implementation group to drive forward the recommendations that came from the national review that took place in 2021. I would be grateful if the minister could provide us with an update on where the Government is in delivering the 15 recommendations that came from the review. I would also be obliged if the minister would indicate where we stand on data collection and on the status of the national eating disorders network, and if she would comment on whether the Government’s resource allocation is meeting the demand for services, including the vital services that are provided by Beat.

In last year’s debate, we heard that one in four people who develop an eating disorder is a man. I said then, regarding men, that we need to get awareness right, change attitudes and further reduce stigma, so that no one is afraid to come forward for help. I am not convinced that we are getting that right yet, for men. Unfortunately, I am hearing of more men and boys who are suffering and who are not getting the help, support and treatment that they need and deserve. I urge the minister to look at what can be done to run an anti-stigma campaign that has a greater focus on men and boys, so that those folk are not afraid to come forward for the help and treatment that they deserve.

I again thank Emma Harper for lodging her motion, and I thank members—Elena Whitham, in particular—for the many powerful speeches that have been made today. I hope that the minister will, in her speech, which we are about to hear, address the points that I have made.

I welcome this annual debate to mark eating disorders awareness week. It is really important to raise awareness of eating disorders and the substantial impact that they can have on people who are affected by them, and their families and friends.

I thank Emma Harper for lodging the motion this year and for focusing our minds on how significant the subject of eating disorders is. I assure Emma and all members across the chamber that this Government is committed to supporting people with eating disorders, including ARFID, to get the right support at the right time. We recognise that early diagnosis is absolutely vital in treating eating disorders, and that it is essential that people who are diagnosed receive a thorough assessment and get the right care and treatment for every aspect of their illness, as soon as possible.

I extend my thanks and appreciation to everyone across the country who works day in and day out to support recovery of people with eating disorders, and their families.

As we have heard today, the theme of this year’s eating disorders awareness week is ARFID. If left untreated, ARFID can have very serious health consequences, including weight loss and poor nutrition, both of which can impact on growth and development in children, and cause poor health in adults.

As we have heard, ARFID is not an easily recognised condition, but Beat has reported a significant increase in the number of people who seek help. That is why I am pleased that we are providing Beat with more than £600,000 this year alone to provide a range of support services for people who are impacted by eating disorders. The support services include a range of self-help provision and peer-support groups. That partnership continues to be successful, and individuals who have used Beat’s services say—as we have heard tonight—how important it is to have access to a range of support throughout their recovery.

Before I go on to talk about the work that we have undertaken specifically to improve eating disorders services, it might be helpful for me to set out some of the wider policy context. As many members will be aware, last year the Scottish Government published our new “Mental Health and Wellbeing Strategy” and the associated delivery plan. The vision that is set out in that strategy is of

“a Scotland, free from stigma and inequality, where everyone fulfils their right to achieve the best mental health and wellbeing possible.”

The actions in the delivery plan include the establishment of a national eating disorders network, as well as the publication of a national specification for eating disorders care and treatment. I will come on to talk about both those pieces of work in more detail.

Over the past three years, we have taken significant action to ensure that people who require support for an eating disorder can receive timely access to appropriate treatment, including by providing funding to NHS services and to the third sector, and by working with people with lived experience to deliver the recommendations from the national review of eating disorders services.

Since that review was published, we have made positive progress in delivering the short-term recommendations, and work is under way to deliver the remaining recommendations, including the development, for eating disorders services, of a national specification for care and treatment, which is due to be published later this year. Work is also under way to establish a national eating disorders network. I was delighted to appoint Professor Cathy Richards to chair the network, which will support delivery of the specification and the remaining recommendations from the national review.

I will bring us back to the theme of eating disorders awareness week. We have heard that ARFID is a complex condition that is not easily recognised and one that often presents alongside other mental health conditions and neurodivergence. I assure members that improving mental health services is an absolutely key priority for me and for the Scottish Government.

Clear standards are outlined within the recently published core mental health standards, which apply to all mental health services, including those that treat people who have eating disorders. I wish to use this opportunity to urge anyone who thinks that they might need support for an eating disorder to speak to their general practitioner so that they can access the right help as quickly as possible.

Let me pick up on some of the specific points that have been raised in the debate. To respond to Emma Harper and Kevin Stewart, we have made real progress on delivering the recommendations. We will be publishing national specifications later this year, and we have made progress in establishing the national eating disorder network. I am very happy to continue to work with the network to ensure that it is updated on progress.

On the rural areas question, Emma Harper will be aware that the subject is very close to my heart, because I, too, represent a rural area. We know that specialist treatment in remote and rural areas is difficult, so we were pleased to see the expanded use of digital appointments and other technology across Scotland during the Covid-19 pandemic. As the national specification standards are implemented, the national eating disorder network will welcome remote and rural health boards working together to provide specialist care and treatment to their populations. The network will definitely take that into consideration.

I absolutely agree with the points that have been made about stigma. As I have said before in the chamber, stigma is the bane of my life, because it prevents people from accessing the care and support that they require. We need a sustained effort to tackle stigma, including in relation to eating disorders—in particular, the less well-known eating disorders. Maurice Golden will be aware that we have paused before making a final decision on mandating calorie labelling. It has gone ahead in England, so we can potentially learn from what has happened there before we implement changes in Scotland.

I am sure that Maurice Golden would also welcome today’s CAMHS data, which shows that there has been sustained improvement in access, with all but one of our health boards having eliminated long waits and with performance restored to—in fact, it is now better than—pre-pandemic levels. I certainly welcome that and am sure that members across the chamber will welcome it very much.

I again thank Emma Harper for lodging the motion for this afternoon’s debate. I reiterate my support for and thanks to the staff who have been working tirelessly throughout to care for people with eating disorders and their families.