Episode four

00:00:01 Fiona Spence 

Hello and welcome to our podcast series focusing on food well being and mental health. Run by NHS Fife Nutrition and clinical dietetics, mental health and learning disability team. My name is Fiona Spence. I'm a registered nutritionist and today I'm joined 

00:00:21 Fiona Spence 

By Karen Brierton who's a specialist CAMHS dietitian. In this episode we're going to be talking about ARFID, but first of all, let's meet Karen. Could you tell us what CAMHS is first of all, and what is your role? 

00:00:36 Karen Brierton 

So I'm the dietitian in CAMHS, which stands for child and adolescent mental health service. So I see young people up to the age of 18 with various different mental health difficulties. 

00:00:48 Karen Brierton 

So an example might be somebody with an eating disorder, or say young people who have anxiety or obsessive compulsive disorder who also have nutritional difficulties. 

00:01:00 Fiona Spence 

Thank you, Karen, that's really helpful. So I guess to start with maybe you could tell us a bit about what ARFID actually stands for, what it means. 

00:01:09 Karen Brierton 

Yep, so ARFID stands for avoidant restrictive food intake disorder. So it's one of six main feeding and eating disorders that are recognised by the World Health Organisation. 

00:01:21 Karen Brierton 

So ARFID is characterised by a pattern of eating that avoids certain foods or entire food groups, and it's also recognised by restricted quantity or eating small amounts of food. 

00:01:35 Karen Brierton 

So typically a person that has ARFID would be avoiding or restricting their dietary intake for quite a number of different reasons.  And so there could be categorised as coming under three different categories, so the first would be something called sensory based avoidance. So basically somebody with ARFID might be really sensitive to things like the taste, the texture or the smell or even the appearance of certain types of food. And that then would lead to them restricting their intake for those reasons. 

00:02:05 Fiona Spence 

So could you maybe see that in the like of somebody who has autism? 

00:02:09 Karen Brierton 

Yep, absolutely and so there can be a slight difference between people who have ARFID and people that have autism, but often people with autism might also get a diagnosis of ARFID, so there would often be a sensory based avoidance, it might be that somebody just really cannot bear to eat foods that are a particular texture or that just feel very different in their mouth. 

00:02:33 Karen Brierton 

But the difference probably with ARFID, would be that that would really cause a severe restriction of their foods. So somebody with autism might avoid particular foods 'cause they don't like that texture, but they still eat a variety, and they still manage to eat enough, whereas somebody with ARFID probably would avoid these foods and have some anxiety around eating those, which would then cause a real restricted diet. 

00:02:47 Fiona Spence 

Right, OK 

00:02:58 Karen Brierton 

And limit their intake and one of the other categories of restriction could be that they have concern about the consequences of eating. So by that I mean that they might have had quite a distressing experience with food in the past, so something like choking or vomiting. Or they might actually have quite significant pain when they eat, so something like abdominal pain 

00:03:20 Karen Brierton 

That could then cause a person to develop a real feeling of fear and anxiety around food, or around eating, and then that would lead them to avoiding these particular foods or textures. 

00:03:31 Karen Brierton 

So as a result of that, somebody might just restrict their diet to only have real few foods because they are the foods that they feel safe. 

00:03:38 Karen Brierton 

So this can cause a real huge restriction in food. So if somebody in the past has choked, that potentially could cause them to believe that by eating another food that will also cause them to choke 

00:03:50 Karen Brierton 

So they then limit their foods to maybe only five or six different types of foods. Because of this huge fear and anxiety around that episode. 

00:03:57 Fiona Spence 

And you can completely understand that, that seems absolutely rational. 

00:04:00 Karen Brierton 

Yeah, absolutely yeah. So the other category would be the low interest in eating. So for some people eating might not be enjoyable and it almost feels like a chore that they have to eat so they really struggle to eat and they might not recognise hunger cues 

00:04:16 Karen Brierton 

And so they might not feel that they're hungry in the way that we would, or they might generally have a really poor appetite overall. 

00:04:23 Karen Brierton 

So that again would just cause this. Just real lack of interest in food, so they generally don't have that desire to want to eat nice foods or to want to eat because they're hungry. 

00:04:36 Karen Brierton 

'cause there's just no recognition of that. 

00:04:38 Fiona Spence 

Thanks Karen, that's absolutely fascinating. 

00:04:40 Fiona Spence 

So these are the reasons behind ARFID, but is there anything else that needs to be taken into account? 

00:04:47 Karen Brierton 

Yeah, so a person with ARFID might have had one or more of those difficulties, so they may have sensory based avoidance, concern about the consequences of eating or low interest in eating. Or they might have all of those. 

00:05:00 Karen Brierton 

And but also in ARFID, it would also be associated with either a significant weight loss or in children that might be that they've not necessarily lost weight, but they've just failed to achieve the expected weight gain that they should have done or they may be associated with a significant nutritional deficiency. 

00:05:20 Karen Brierton 

Dependence on either enteral feeding, which is a tube feeding or oral nutritional supplements, or there may also be a marked interference with psychosocial functioning. 

00:05:33 Fiona Spence 

So can you explain a bit more about what these mean? 

00:05:36 Karen Brierton 

Yeah, so if somebody has significant weight loss, what that means is that 

00:05:40 Karen Brierton 

If a person doesn't take in enough energy or calories, then they're likely to lose weight. So sometimes in children they might not grow as much as expected, or they might grow, but they might not be gaining adequate weight when they do grow 

00:05:59 Karen Brierton 

So a significant nutritional deficiency that would be when a person has a really limited diet. Often it can be really difficult to get all the essential nutrients that they need for health and then some people because of such severe dietary restriction, deficiencies might develop. 

00:06:13 Fiona Spence 

So we're talking about vitamins and minerals here? When you're talking about nutritional deficiencies. 

00:06:17 Karen Brierton 

Yeah, vitamins and minerals. But also there could be deficiencies in things like protein or people may not be getting enough fats in their diet too, so not just the vitamins and minerals. 

00:06:28 Fiona Spence 

So what types of deficiency would you expect to see in a person with ARFID? 

00:06:32 Karen Brierton 

So it can be quite an individual thing. It really depends on what the person is eating or what they're avoiding. 

00:06:38 Karen Brierton 

So for example, a young person might be eating quite a typically beige diet and avoiding crunchy or chewy textures because of a fear of choking. So that might mean that they've got some deficiencies in iron or folic acid. 

00:06:52 Karen Brierton 

Or B vitamins. 

00:06:54 Karen Brierton 

There might be other young people who are avoiding whole food groups, so for example, they're only eating bread pasta or biscuits, and that means that they're missing out on the protein sources, so things like meat, cheese, eggs, pulses they might not manage. So then they have a deficiency in that often. 

00:07:13 Karen Brierton 

The limited diet might cause weight loss and then that can lead to other complications. So things like muscle weakness or eventually osteoporosis or potentially other medical problems. 

00:07:26 Fiona Spence 

Huge knock on effect. 

00:07:27 Karen Brierton 

Yeah massive yeah and in quite extreme cases they might actually have multiple deficiencies because they're eating such a limited number of foods. 

00:07:37 Karen Brierton 

So often what we can find is that the person is actually a healthy weight, so on the outside they look healthy, but actually their diet is so restricted that they can still be deficient in some of the main nutrients. 

00:07:50 Fiona Spence 

Very deceiving I suppose as well, because if you are a healthy weight and maybe you restrict only maybe a certain type of food, that you may not be thinking about the actual consequences and actually what's going on inside your body. Yeah, masks it, doesn't it? 

00:08:05 Karen Brierton 

Yeah definitely, absolutely. And there are some cases in people with ARFID that their diet is so limited that they might need to have some oral nutritional supplements so a supplement drink that just adds to their diet and give some additional protein, calories, vitamins and minerals. 

00:08:24 Karen Brierton 

And then in the extremely severe cases you do see people with ARFID that might actually require a tube feed so their diet can be so limited that it's causing weight loss or failure to gain adequate weight. 

00:08:38 Fiona Spence 

That's very invasive, isn't it? Especially if you're talking about a young person, yeah? 

00:08:39 Karen Brierton 

Yeah, really is. 

00:08:41 Karen Brierton 

Yeah, absolutely, but that would be quite an extreme case, but there are definitely lots of people who would rely on tube feeding because of ARFID because their diet is so limited that they need that to supplement what they're able to eat. 

00:08:56 Fiona Spence 

And could that also be because they can't maybe tolerate, uh, a drink as well, yeah? 

00:09:02 Karen Brierton 

Possibly so we would always go down the route of first of all, trying to make sure they can take everything orally and so it would be quite a last resort, but it is sometimes needed. 

00:09:13 Fiona Spence 

So having such a restriction in their diet must really impact on their well being. 

00:09:18 Fiona Spence 

Eating and eating such a limited range of foods must have a significant effect on their mental health. 

00:09:24 Karen Brierton 

Yeah, absolutely, and that's where the the psychosocial functioning would come into play so often being limited in what a person can eat can have a huge impact on their well being, so it could cause difficulties at home. It might cause difficulties at school or at work or out with friends. 

00:09:41 Karen Brierton 

And many people with ARFID can find social occasions or holidays really difficult. So any situations where eating is involved is going to cause a real huge stress and anxiety and then that can impact relationships with other people. 

00:09:55 Karen Brierton 

Or it can result in social isolation. So if you think if you have  ARFID as an adult 

00:10:02 Karen Brierton 

and you know you're work colleagues are going out somewhere for lunch and you know that there's no way they're going to have any foods that you can tolerate the texture or that you're concerned about particular food. 

00:10:11 Karen Brierton 

Potentially that's going to stop you doing that and make you quite isolated. 

00:10:15 Fiona Spence 

You would, that's exactly what you do isn’t it.  You wouldn't actually put yourself in that situation, you would just remove yourself from that situation, yeah? 


Yes, absolutely. 

00:10:20 Karen Brierton 

And also then that you know the really limited diet also can cause weight loss or low weight and that in turn will also have a real huge impact on somebody's mood. 

00:10:32 Karen Brierton 

So we do find that people that are a low weight often might be lower in mood, or the anxiety might be heightened, or they might just be much more irritable or tired all the time and it again will have a really big impact on how you function socially. 

00:10:48 Fiona Spence 

And I suppose as well, when you're going down, you know talking about anxiety that is that you know nervous energy that could potentially be adding into the weight loss as well. 

00:10:57 Karen Brierton 

Yeah, definitely yeah. So there's always are. 

00:11:00 Karen Brierton 

A real concern about eating particular foods or that huge anxiety on trying something new that you've not had before, and that feeling of anxiety that just continues over the days. So definitely. 

00:11:10 Fiona Spence 

It's like the butterflies in your stomach. They just can't get rid of. 

00:11:12 Karen Brierton 

Yeah, it’s going to have an impact on how you're feeling. 

00:11:16 Fiona Spence 

So in practical terms, what would you be looking out for if you suspect someone, say in your family, or a friend may have ARFID? 

00:11:26 Karen Brierton 

So one of the key things would be are there feelings of anxiety about eating or the consequences of eating? 

00:11:32 Karen Brierton 

So is there a real concern about choking or vomiting or pain? Is there anxiety about trying new foods and by anxiety about trying new foods, I mean, you know not just or don't really like that. I might not try it actually. 

00:11:46 Fiona Spence 

Yeah, so you have fussy eaters, you know kids can be a little fussy and they go through phases.  There’s quite a difference. 

00:11:48 Karen Brierton 

Yeah, kids can be fussy absolutely and by anxiety it would be quite different. It would be marked anxiety and when given a new food there would be really almost extreme levels of the inability to even touch the food, not even about eating. Sometimes people with ARFID can't even bring themselves have that particular food on the same plate as the rest of their meal. Or they might find that just even the thought of the food can give them anxiety. 

00:12:15 Fiona Spence 

And I suppose, with children and adolescents, they may not always be able to communicate quite so well away as an adult may. 

00:12:26 Fiona Spence 

That they have these anxieties so it's looking, I suppose looking for cues in your child or your adolescent. 

00:12:32 Karen Brierton 

And often with ARFID, the child may also have autism, so they may not be able to communicate the exact reason why they're not eating so it can come across that they're very avoidant of particular foods, but they actually can't articulate that it's a texture, or that it's a worry that they might be sick, or that they might choke, so that can be be difficult, so that's where the families are really important. 

00:12:55 Karen Brierton 

And identify and not acknowledging that there might be a difficulty and something else to look out for us, is there any interest or enjoyment in food or eating? 

00:13:06 Karen Brierton 

So again, you know we all enjoy particular foods and there's always foods that we don't like, but actually it's thinking about overall people with ARFID generally tend to just have absolutely no enjoyment in food and they stick to their very safe foods, and those foods are tolerable, but they maybe don't necessarily provide enjoyment 

00:13:29 Fiona Spence 

It's a way to fulfil your hunger. 

00:13:31 Karen Brierton 

Yeah, and some people might not even recognise hunger, so it might be that they're eating 'cause then they just know they have to eat or it's it's a chore. 

00:13:40 Karen Brierton 

It's something you have to do, but it's not providing great enjoyment and you find a lot of people tend to use what we would call safety behaviours. So by safety behaviours that might mean that. So for example, if a person has choked in the past, then they might believe that by 

00:13:59 Karen Brierton 

Cutting food into tiny bits or by eating. 

00:14:02 Karen Brierton 

Really small amounts of food or by tuning food for longer than needed. Then that's going to help them to avoid the choking. 

00:14:10 Karen Brierton 

Or they might think that I'm only going to eat really soft foods or I'm only going to eat very specific foods because if I eat the hard, crunchy foods that might make me choke again and there can be huge anxiety over that. Again, you know, just avoiding. 

00:14:23 Karen Brierton 

Particular situations too, so they might not want to eat out or eat at school or eat with friends. So all really difficult things. 

00:14:31 Fiona Spence 

Now you mentioned earlier about sensory characteristics, which actually really interests me, and probably people are quite fascinated by this. What do you mean by sensory characteristics? 

00:14:43 Karen Brierton 

Yeah, so by sensory characteristics. So that means when somebody limits their food type based on things like the texture of the food or the colour of the food, or even the smell. 

00:14:54 Karen Brierton 

So I think most people imagine sensory characteristics to be more about the texture and particular foods and how that feels in their mouth of its crunchy of its slimy. 

00:15:03 Karen Brierton 

Avoidance on that, but also 

00:15:05 Karen Brierton 

The colour some people just can't eat foods, for example something like broccoli. It's really green and they don't want to eat that. 

00:15:11 Fiona Spence 

And actually, yeah, that's fascinating, because even like even I know adults that I've known for years and there are certain things that make them literally gag, and they will actually say that. 

00:15:21 Fiona Spence 

But there's a big difference between you know having that sort of these are sensory. These are sensory things, but in somebody with ARFID that would be significantly heightened, wouldn't it? 

00:15:33 Karen Brierton 

Yeah yeah. So in an adult that might be a normal thing. Might be that they avoid particular things but in ARFID the sensory element of it means their diet is so so limited and they just can't even bring themselves to look at or to touch or to eat that particular food. 

00:15:51 Karen Brierton 

Uhm, so it might be something like the smell, so maybe they really can't tolerate any smells of food. Or it might be smells of a particular food cooking and that just heightens that sensitivity. 

00:16:02 Karen Brierton 

Awareness and anxiety going on. 

00:16:04 Fiona Spence 

Fish always gets a bad press for that one, doesn't it? 

00:16:07 Karen Brierton 

Yeah, yeah, possibly yeah. 

00:16:08 Speaker 1 

It's the smell of fish everybody has this thing about the smell of fish, either love it or hate it. 

00:16:11 Karen Brierton 

Yeah, yeah, but I mean it might be the smell or something that we might enjoy. 

00:16:17 Karen Brierton 

You know, like the smell of bread or the smell of chocolate that we think is good. Maybe somebody with ARFID just can't tolerate that and then they just can't eat that particular food and that might be one of many. So often the diet is so limited to you know it might only be 10 different types of foods that they're eating, because they just cannot tolerate any of the other foods 

00:16:36 Fiona Spence 

Really distressing and it must be really distressing for families. 

00:16:38 Karen Brierton 

Yeah, definitely. And often there's there is a huge amount of anxiety amongst families because parents are thinking, well, my child is only eating these very few foods, so I'm really worried about they're not getting their fruit and veg or they're not having enough dairy products. 

00:16:52 Karen Brierton 

And often that's a lot of the work that we do is with families and with the reassurance and you know? 

00:16:59 Karen Brierton 

Going through diet intake and making sure that it's adequate, but also reassuring that you know sometimes it is OK and there's some small things they can do to improve upon. 

00:17:08 Fiona Spence 

I think you relate to that. If you're within a family where there's you know young children or even older children, but there are more than one. 

00:17:18 Fiona Spence 

If you've got a child who can't tolerate particular smells or the look of something or the textures, it's not just about them that then is you know impacted. 

00:17:28 Fiona Spence 

By these sensory issues actually. Then you can't cook certain things in that household because of the impact it will make on one person which so that it must just have a massive impact on a whole family. 

00:17:40 Karen Brierton 

Yeah, definitely it will. It will in fact impact a lot of the people within the family and you know, it might mean they can't go out for meals or that they can't have friends over it might be that you know the person may just want to eat on their own. Sometimes they can find the noises of other people eating or just the association with food and sitting around and having a family meal can be really, really difficult. 

00:18:04 Fiona Spence 

So is there anything else to look out for with somebody who has ARFID? 

00:18:09 Karen Brierton 

Yeah, so if you're if you're concerned, maybe about a family member or friend and you suspect ARFID. All these points would be considering, but also having to think about is there any recent weight loss? Do they appear underweight? Again? As I mentioned before have they failed to achieve their expected growth targets? 

00:18:27 Karen Brierton 

The difference here also is though that there may be weight loss and they may be underweight, but their diet is limited in the absence of body image concerns. 

00:18:37 Fiona Spence 

Now you mentioned body image. If you had somebody who had ARFID, would they not be? Would there not be body image concerns there then? 

00:18:48 Karen Brierton 

No. So in people with ARFID, there tends to be no body image concern and by that what I mean is that somebodies not restricting their diet in a way that they want to change the way they look, for example, that they want to lose weight, or that they want to appear thinner. 

00:19:05 Karen Brierton 

So that's where there's a difference between ARFID and anorexia nervosa, so sometimes both can have quite a similar presentation. 

00:19:12 Karen Brierton 

So for example, a person might present as being quite underweight and limiting their diet and showing lots of distress at mealtimes, so that would be true of both ARFID and anorexia nervosa. 

00:19:23 Karen Brierton 

However, in people with RFID, there's just no body image concern. Something with anorexia typically will be very concerned about that weight gain despite being. 

00:19:32 Karen Brierton 

Then uhm, however, in ARFID there's no real what we would call body dysmorphia, which means that when you look in the mirror, what you see is is different to what everyone else sees. So somebody with anorexia nervosa Might be extremely thin and underweight and look in the mirror and believe that they're overweight, whereas somebody with ARFID would not have that type of body dysmorphia. 

00:19:53 Fiona Spence 

It's really fascinating for you to clarify that because it must be really tricky when you've got these similarities between the two different diagnoses. 

00:20:02 Karen Brierton 

Yeah, and sometimes when people present they can often it can be assumed that it's anorexia nervosa and it's not until we go a little bit deeper into history or into getting to know the person that it comes out as being more of an ARFID presentation rather than a typical anorexia. 

00:20:20 Fiona Spence 

Is this because ARFID maybe sort of more new? 

00:20:24 Karen Brierton 

ARFID is not really a new diagnosis. 

00:20:27 Karen Brierton 

But there's certainly much more awareness of it recently, so ARFID has been in what we call the DSM 5, which is a diagnostic and statistical manual for mental disorders. 

00:20:39 Karen Brierton 

So that would be there be different forms of eating and feeding disorders, and that would be the categorization of them and how they diagnosed. 

00:20:48 Karen Brierton 

ARFID has been in that manual since 2013, so really almost 10 years. However, I think definitely, and probably in the last even year there's much more awareness of ARFID. 

00:21:00 Karen Brierton 

And there is a lot more people seeking help and a lot more people being aware that it's a different condition and that there is a need for a treatment and that there's a real need for people being able to identify it and not just classify it as something different. 

00:21:19 Fiona Spence 

I suppose that's really helpful as well and I think when we relate to the pandemic that everybody is going through as well, the heightened anxieties through so many you know different people that's it's a really important thing to note as well that it is this awareness isn’t it 

00:21:36 Karen Brierton 

Yeah, and I think getting awareness out there off of ARFID and what it is and how you can access treatment and what you can do. 

00:21:46 Karen Brierton 

If you feel somebody has ARFID is really important as it is with any type of eating disorder, any form of awareness is great just to make sure that people can get really early treatment. 'cause that's a key thing for getting better and actually improving your diet and being healthy is to get in there early and make sure you can access. 

00:22:07 Fiona Spence 

And for families, but especially for health professionals as well, I suppose. 

00:22:11 Karen Brierton 

Yeah, definitely, and I think there's a lot more awareness amongst health professionals now to for ARFID  

00:22:16 Karen Brierton 

A lot of people that would perhaps approach me as a dietitian and ask for help or ask, what do we do with this person? 

00:22:24 Karen Brierton 

We think they might have ARFID, but we're not entirely sure, and it's knowing who to contact. And actually giving guidance on how to support them. 

00:22:27 Fiona Spence 

Knowing who to contact, isn't it? 

00:22:33 Fiona Spence 

So now we know about the features of ARFID and its diagnosis. What is the treatment for ARFID? Is there a treatment? 

00:22:40 Karen Brierton 

So currently there's actually no national guidance for the treatment of ARFID as there is for other eating disorders such as anorexia nervosa or bulimia nervosa. 

00:22:51 Karen Brierton 

However, it is something that many services within NHS are currently working on, and we're really trying hard to have some really clear set guidance and trying to streamline all services, and that doesn't mean that there's no treatment though, and there are a lot of ways to treat ARFID. 

00:23:09 Fiona Spence 

So what would be the first approach to accessing treatment? 

00:23:12 Karen Brierton 

So firstly the person themselves, or if it's parents or carers of a child. I would recommend that they arrange an appointment with their GP. 

00:23:21 Karen Brierton 

The GP would then be able to make a referral to the relevant service so that really depends on the age of the person and the locality. So young people might be treated by their local community eating disorders service for children and young people. So that might be within CAMHS The child and Adolescent Mental Health service.  

00:23:46 Karen Brierton 

They might be treated within a community paediatric service or a local acute paediatric service. There's also a range of private practitioners, including dietitians, speech and language therapists, psychologists, occupational therapists who might specialise in the treatment of ARFID. 

00:24:00 Karen Brierton 

Adults with ARFID might be treated by a specialist eating disorders service, or they might be seen by a general mental health service. It really depends on often which area you live in. Also what services they have available, 'cause it may be quite different. 

00:24:17 Fiona Spence 

So now you've given us an indication of how to access the treatment. What is the actual treatment, Karen? 

00:24:25 Karen Brierton 

So the treatment for ARFID is usually is best tailored to the needs of the individual, so we would base it on the nature of the difficulties that the person is experiencing and what we would consider as maintaining these difficulties. 

00:24:38 Karen Brierton 

So for example, a person who's avoiding food due to fear of choking might follow a slightly different style of treatment to someone who's limiting their diet because of the texture, the smells, or the taste of food. 

00:24:50 Karen Brierton 

So our food treatment always begins with the individual and then his or her treatment team would set goals surrounding eating 

00:24:59 Karen Brierton 

So for example, a goal might include correcting growth deficiencies and micronutrients status. So by that I mean that the main aim might be that actually we need to look at this person gaining weight they might be underweight and our main concern is to firstly get them up to a healthier weight, or they may have some deficiencies in, for example, things like folic acid or iron levels, and we need to look at how can we correct those. 

00:25:29 Karen Brierton 

And another goal might just be that we're aiming for the person to eat a much larger range of foods, or it might be that they need to feel more comfortable being able to eat in front of others. 

00:25:40 Karen Brierton 

And we might be looking at how do we help them to be less fearful about choking or vomiting or pain? 

00:25:49 Karen Brierton 

And also trying to help them increase that interest about food. 

00:25:53 Karen Brierton 

And reducing the anxiety that surrounds eating. 

00:25:57 Fiona Spence 

And these must be really long term goals, because if somebody has suffered with these anxieties around eating, these aren't just short term fixes. This is something that's a really long drawn out process with a lot of patience. 

00:26:10 Karen Brierton 

And that's a really good point. 'cause ARFID is something that is not treated in just a few weeks, and that's something that's really, really important for the person with ARFID and also for their families to take on that. Actually, yeah, that this can take quite intensive work, and it might go on for quite a while 

00:26:23 Fiona Spence 

And the psychological input that must be needed as well. 

00:26:28 Karen Brierton 

Will take quite a long time. It might take several months. It might take a year. It might take even longer than that. 

00:26:35 Karen Brierton 

It's really quite a slow process for a lot of people, and I think that's something really important that they recognise from the start that it's not just a quick fix, it's not something that we can just treat and have you know? 

00:26:47 Fiona Spence 

That must be quite a difficult conversation to have with families at this. You know, I suppose when you know if there's a diagnosis for anything else, sometimes it's you know, well, we've got some medication for that. 

00:26:50 Karen Brierton 

Yeah it's yeah. 

00:26:56 Fiona Spence 

Or we've you know this is something that could be resolved quite quickly, but it's actually that must really increase your anxiety as a family. 

00:27:02 Fiona Spence 

For this young person that you're caring for going through something which needs a huge amount input and has actually a really, really long term. 

00:27:10 Karen Brierton 

Yeah, and I think that's why it's so important that they're aware from the beginning that this is quite a long process and it is very similar with the treatment of anorexia, especially in young people, that the treatment may take a year and that's something we would always tell families about right from the beginning so that they are aware of that. And now there are people with ARFID. 

00:27:30 Karen Brierton 

Who may find they've met some of these goals within the first six months, and that would be great, but often it can take much longer than that. 

00:27:38 Fiona Spence 

So how is the dietitian involved in the treatment of ARFID? 

00:27:42 Karen Brierton 

So the dietitians are a hugely important member of the multidisciplinary team working with ARFID. 

00:27:49 Karen Brierton 

So the dietician would be looking at checking weight and checking height and comparing this to healthy levels or comparing it to expected growth. 

00:27:59 Karen Brierton 

They'll assess whether there's been any significant weight loss, and they can monitor any improvements in weight and improvements in growth. 

00:28:07 Karen Brierton 

And the dietitian is also really key to assessing the adequacy of a person's diet. So they're the person who would be able to identify are there any key food groups that are limited or are there any nutrient deficiencies? It might also be necessary that the dietitian might recommend that the person has some blood tests to cheque the blood levels of particular vitamins and minerals. 

00:28:33 Karen Brierton 

Uhm, often it's quite likely that vitamins and minerals need to be supplemented, so that's another real key part of the dietitians role that if you think about somebody, typically with ARFID, they potentially will really struggle with taking a bog standard vitamin and mineral supplement, 'cause maybe they can't actually swallow a tablet. 

00:28:53 Karen Brierton 

Or it might be to do with the texture of the tablet. Again, so often we need to really individualise their recommendations and decide do they need a multivitamin and mineral supplement that's a chewable format or something that’s soluble? Yeah absolutely. And and that really varies on the individual basis, so there's no sort of blanket is what you need to take. It depends on their diet, what they're lacking and also on this or sensory characteristics to come. One thing that is 

00:29:24 Karen Brierton 

Really, really important with the work of the dietitian is that they're working within a team of experts, so. 

00:29:30 Karen Brierton 

ARFID is not something that they would just see a dietitian. You really need the support of the whole what we call the MDT. 

00:29:37 Karen Brierton 

So the multidisciplinary team and so ideally you would want a psychologist to be working with somebody with ARFID and you would also want somebody to do a medical assessment. 

00:29:50 Karen Brierton 

So that might be a GP. It might be a paediatrician, or it might be a consultant psychiatrist. 

00:29:57 Fiona Spence 

Now, Karen, you mentioned that a psychologist would be involved within this multidisciplinary team. What would the psychological input be? 

00:30:06 Karen Brierton 

Yeah, so psychologist ideally would be involved with person with ARFID and what they might work on is something called graded exposure or they might work on cognitive behavioural therapy, which is also known as CBT and there is a, CBT which is specific for ARFID too. 

00:30:25 Fiona Spence 

What do you mean by exposure therapy? 

00:30:28 Karen Brierton 

So exposure therapy would involve relaxation techniques, mental visualisation and writing, and talking about the avoided foods. It might involve learnings and positive coping skills for overcoming the fear and anxiety surrounding food. 

00:30:46 Karen Brierton 

So obviously when it comes to trying a new food for a person with ARFID this can cause huge distress and the process of trying new food as I mentioned is extremely slow, so sometimes it might be not just about the taste of the food. We need to think about the environment, so where's most comfortable. 

00:31:04 Karen Brierton 

Does a person like eating in a quiet place. Do they maybe like having a bit music on in the background? Is that going to help them relax? Maybe they use specific bowls, specific cutlery. 

00:31:14 Karen Brierton 

And so with exposure therapy, the very first steps might be just something very very small, so it might be actually that we place a new food on the plate and the person just actually tolerates that new food being there and looking at it. 

00:31:28 Karen Brierton 

And the next progress might be that they then touch the food with a fork. They might then touch with their finger. They might smell the foods. 

00:31:35 Karen Brierton 

They might just hold it to their mouth and lick it or hold it in their mouth. 

00:31:40 Karen Brierton 

And then after all those steps comes the final stage of actually chewing and swallowing. 

00:31:46 Karen Brierton 

So if you think about a food that you maybe absolutely hate, and perhaps combine that with a fear that that food might make you choke, or it might make you sick, that's almost maybe getting towards a little bit of how somebody with ARFID might feel when it comes to trialling a new food. 

00:32:02 Fiona Spence 

That must be so challenging as a parent or carer to try and encourage a child along with obviously the multidisciplinary team. But when you're at home, you know you don't have these health professionals around you 24/7. 

00:32:13 Fiona Spence 

That for in a family environment, trying to keep that kind of progress going must be a huge amount of pressure on a family. 

00:32:20 Karen Brierton 

Yeah, and it can be hugely distressing for family too. So to think that you see such a huge fear of trying new foods with your child but you know their diet is so limited that you really, really want them to try something new. But then watching them even touching it causing huge distress. 

00:32:35 Fiona Spence 

You wouldn't want to put them in that situation 

00:32:36 Karen Brierton 

Yeah.  So it's very hard to continue to push that, and that's where the whole process of them. 

00:32:44 Karen Brierton 

The exposure therapy is really, really helpful 'cause the psychologist can help support the families but also help to support the person to go through that and to actually finally hopefully try some new foods. 

00:32:57 Karen Brierton 

And so sometimes in younger children that I might work with, or with the psychologists, the treatment might be more orientated around actually play with food. So maybe in somebody younger, for example somebody who's maybe sort of 7 8 9. 

00:33:12 Karen Brierton 

It might be quite a big step to actually go straight in and trying new foods, so they've got lots of issues around texture or the sensory elements. 

00:33:19 Karen Brierton 

It might be that they start off with and play with food, so they might start playing with dry textures like pasta or rice and then progressing onto sort of the cooked variety so they can touch that different texture. 

00:33:31 Fiona Spence 

That's fascinating, actually. 

00:33:33 Fiona Spence 

Introducing the play aspect of it. 

00:33:35 Karen Brierton 

Yeah, and I think for some children it just makes them feel much more comfortable. 

00:33:38 Karen Brierton 

So if they've got a real fear of particular foods. 

00:33:41 Fiona Spence 

And there's no pressure to put it in their mouth 

00:33:42 Karen Brierton 

There's no pressure to be going in their mouth, but actually just the process of playing or making a little picture out of dry pasta. Or actually putting their hands in something really slimy like cooked pasta or ported or something that they're really fearful of that texture. 

00:33:55 Karen Brierton 

It's that initial stage which can really help. Before 'cause the food process they trying is such a huge step process sometimes just to play can be really really. 

00:34:04 Fiona Spence 

Helpful, I think that's it's a really fascinating part. 

00:34:08 Fiona Spence 

To talk about as well, 'cause even if you've got somebody, if we're not even talking about ARFID but actually just thinking about young children and how they have certain, maybe not like a fear, but actually like that fussy eating thing, but actually to introduce a bit of play around these foods. 

00:34:23 Fiona Spence 

That could actually. 

00:34:24 Fiona Spence 

You never know it could be slightly helpful, yeah? 

00:34:26 Karen Brierton 

It definitely, and I think it's not just for ARFID that would be helpful. It is definitely for the you know children who are very fussy about the foods that they eat or that they just maybe have some issues with texture because they just having a texture issue doesn't mean that it's ARFID. There's a lot of children that don't like particular textures so often the involvement of play. 

00:34:46 Fiona Spence 

Would be so helpful. Good introduction then. 

00:34:49 Karen Brierton 

And so with the exposure therapy, normally we will look at all these very small steps and then work on building them. 

00:34:55 Karen Brierton 

So the dietitian may also be involved in more of a food chaining approach. So what that would mean would be that so an example might be if the person one of their main food types that they like is a chicken nugget, it might be that they really like a particular brand of chicken nugget, and we try a different brand. And then we might move on to trying. 

00:35:16 Karen Brierton 

Something like a chicken goujon and then we might move on to trying a homemade breaded chicken and then more progressed to trying a bit of chicken, right? 

00:35:24 Karen Brierton 

So again, really long process and that's just one foot, so you can imagine how long that process might take when somebody so limited. So that's where. 

00:35:29 Fiona Spence 

Oh my goodness yeah. 

00:35:32 Karen Brierton 

Or, you know, we really need that MDT approach, yeah, and we just need needs. You know, quite a committed family involvement too. 

00:35:34 Fiona Spence 

It's fascinating to listen to the approach, though. 

00:35:38 Fiona Spence 

Very gentle, isn't it? 

00:35:41 Karen Brierton 

They need that's, you know, they need to be. 

00:35:43 Karen Brierton 

Aware that this is how slow it is, and actually this is the steps we need to take, but it can work. It can just take quite a long time sometimes. 

00:35:51 Fiona Spence 

So you mentioned CBT? What would CBT for ARFID look like? 

00:35:56 Karen Brierton 

So CBT is cognitive behavioural therapy. So basically it's a type of talking therapy, and it can help individuals to identify and change self destructive patterns of thoughts and of behaviours. 

00:36:09 Karen Brierton 

So CBT can also treat things like anxiety, depression, obsessive compulsive disorder, and sometimes those actually occur alongside ARFID. So the CBT might actually be looking at more the anxiety, or it might be looking at the OCD, but there is a CBT specifically for ARFID that we might 

00:36:29 Karen Brierton 

Use to tackle all these things so the fear of choking or the fear of vomiting or we might the fear of eating or trying new foods. 

00:36:37 Karen Brierton 

So the actual specific CBT for ARFID is more of a four stage approach which can be used to sort of look at what are the current difficulties. 

00:36:46 Karen Brierton 

How do we treat these? How do we ensure that the person reaches a healthy weight? 

00:36:51 Karen Brierton 

And also how do we make sure that they not only eat foods from all the different food groups, but they're also challenging new foods? And all these really difficult social situations, so a bit of you know, a four stage approach to look at all these different aspects of it. 

00:37:07 Fiona Spence 

If you had somebody that you know is listening, thinks I may have arfid do I need a diagnosis? 

00:37:14 Karen Brierton 

So it's really very much up to the individual, so although it's not essential to seek a diagnosis of ARFID, it can be really useful so that healthcare professionals can then tailor their approach to treatment or also for schools or workplaces so that they have much more awareness and that the person can gain support. 

00:37:31 Fiona Spence 

I suppose it is about that, isn't it? Is about the person getting the right support. 

00:37:36 Karen Brierton 

Yeah, so that's one of the key things with ARFID that you know. If you believe you have ARFID or a family member has it, then we really need you to seek support and to get that help fairly quickly. 

00:37:49 Fiona Spence 

So what would be the first steps? Do you know if somebody has made if somebody made that first point in contact with their GP and they're waiting to hear back? 

00:37:57 Fiona Spence 

Or they're considering that they do have ARFID? UM, what sort of support is in place for them at this moment? 

00:38:05 Karen Brierton 

So obviously they've then gone through the first step of contacts in GP. They might be awaiting input from CAMHS or from adult services and in in the meantime of that, there are some really good online supports that people can access so one of these would be BEAT 

00:38:22 Karen Brierton 

which is the eating disorders charity which has a lot of really great information on our foods and has recently set up some support groups for our food to their website would be  

00:38:42 Karen Brierton 

And other websites which can be really useful for information on ARFID and resources and how to identify ARFID how to seek support would be ARFID Awareness UK, so they also have a really good website with lots of information on it. 

00:38:57 Fiona Spence 

And we are going to these links that Karen mentioned. We're going to make sure that these are in the description below for people to access, so you'll be able to just click on the links in the description. 

00:39:05 Fiona Spence 

Karen, it's been an absolute pleasure talking to you today. I've learned so much about ARFID I knew nothing about it, so this has been a fascinating conversation today. If we had three points. As tricky as this will be. 

00:39:16 Fiona Spence 

Three points or take home messages for people listening today what would they be? 

00:39:21 Karen Brierton 

Yeah, so it's probably quite difficult to summarise it in three points, but I would say what is ARFID? so typically a person with ARFID will be avoiding or restricting their diet intake for different reasons, whether thats sensory based avoidance, the concern about the consequences of eating or low interest in eating, but also they will also be associated with that either the weight loss or the nutritional deficiency. 

00:39:47 Karen Brierton 

The dependence on some other form of feeding such as enteral feeding or nutritional supplements, or that marked interference with their psychosocial functioning. 

00:39:56 Karen Brierton 

Secondly would be just to make sure that you seek help as early as possible. So if you have a concern about somebody or if it's about yourself approach your GP seek some online support and try and get access to the right services. 

00:40:12 Fiona Spence 

So Karen, that's been absolutely fascinating. I think you know you've summarised it really well. It's very difficult when we've had such an interesting conversation today. 

00:40:21 Fiona Spence 

But yeah, like you say one, know what to look for, 2 seek help early and three, have a look at the links for support and they are there in the description below 

00:40:30 Fiona Spence 

It's been an absolute pleasure chatting with you today. 

00:40:32 Karen Brierton 

Thanks very much, it's been great. 

00:40:34 Fiona Spence 

And thank you very much for listening. We look forward to welcoming you back to another podcast soon. 

00:40:38 Fiona Spence 

Thank you.