Young people we spoke with often had experience of dealing with many different types of health professionals including:
• GPs
• nurses
• counsellors
• psychologists
• psychiatrists
• nutritionists
• social workers
• other support workers.
Based on their personal experiences they were keen to pass on messages about how health services for other young people could be improved.
“Never ever give up on us”.
“Never ever give up on us”.
Age at interview: 23
Sex: Female
Age at diagnosis: 20
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It’s gonna be frustrating and it’s gonna be difficult but it’s just so important that these young people get the help and just not giving up on them. Never, never give up on somebody. Always fighting for them and although we might say we don’t want the help and we hate going I think, deep down, we really do want the help and we do want to go and just to really, I really admire people who do that kind of treatment ‘cos it must be really frustrating. And it must be so difficult, but just to never give up and to always keep trying. Yeah but it is difficult.
‘Treat the whole person’
“I think the main thing is to treat people as people. Everyone’s different, everyone’s an individual, we’re not goals or anything like that. We all have our different needs and I think it’s important that those needs are addressed.” Craig
Above all else, young people wanted not just to be seen as “an eating disorder” but to be treated as a whole person. It was important that people felt they were treated as individuals and for health professionals to realise everyone “reacted in different ways”. A good health professional was able to suggest different treatments and find solutions in ways that suited the individual they were trying to help.
Feeling respected and that they were being listened to was important during treatment and recovery. People wanted professionals to take their time and find out what was going on for that particular person, and not to make assumptions. James said that it was important to listen and let people speak and explain things from their perspective. Those who had been young when they developed, and got treated for, an eating disorder sometimes felt patronised and not asked their opinion about their care. Eva said it was a good idea to ask about other things, such as hobbies and other interests, and not just be limited to medical facts and information.
When Elizabeth was being treated by children’s mental health services she felt “very patronised”...
When Elizabeth was being treated by children’s mental health services she felt “very patronised”...
Age at interview: 20
Sex: Female
Age at diagnosis: 12
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I think the teenage ones were very patronising. Very patronising. They didn’t understand what my needs were and what, it sounds really bigoted, really they just, in the adult services they realised what were the key, what were the things that were important to me that are gonna be the big motives for getting better. Like my adult therapist realised that I want, I have a really good job and I want to have a close set of friends, but like having a baby or like having yeah, isn’t that important to me. So they’ve really like honed in on like, “Okay you need to get better so you can like survive like internships, and, “so you can like survive like a long day in the office or so that you can like see your friends.” They’ve realised that those things are important to me, whereas in the teenage services they just treated you like you were a child. And so they just like force fed you, and like said, “You need to get better.”
So I think massively, I mean it might not be, I think I was, I think it’s fair to say I was quite a mature teenager, so I was quite shocked when they didn’t treat you as an individual, but treating each child more, realising what each child wants from their life more would massively help. And I also just think being less patronising. Speaking to you as a person rather than to your parents, or being very dismissive. And, yeah I think that’s, think that’s it yeah.
People with eating disorders often struggled with self-confidence and felt unworthy of the doctors’ attention and time. They described how important it was to be taken seriously and never be blamed for any of their problems. People said it was easy to tell when a health professional showed genuine interest in their wellbeing.
Suzanne felt that health professionals shouldn’t dismiss issues that were important to the person...
Suzanne felt that health professionals shouldn’t dismiss issues that were important to the person...
Age at interview: 16
Sex: Female
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And it’s their job as health professionals to try and help people and it doesn’t matter if they think there’s not an issue. If the person thinks there is an issue, at least, you know at least don’t laugh at them and be like, “No, there’s nothing wrong with you.” Because there’s nothing worse for someone’s confidence than to laugh at them, and tell them that there’s nothing wrong. So actually listen to them because the chances are the patient knows best.
Yes, you were saying that people themselves will know themselves best, and I guess when people pick up the courage to go and talk to somebody they then should be taken seriously. Because they’ve taken such a big step in doing that.
You wouldn’t do that lightly if you didn’t think there was something wrong. You wouldn’t do it because it would be embarrassing if you, if you did that and there was nothing wrong. If you knew there wasn’t anything wrong you’d just be wasting the doctors’ time and you wouldn’t, the chances are you wouldn’t do that.
Steph felt that it is essential to be treated as an equal. Although people’s thoughts might seem...
Steph felt that it is essential to be treated as an equal. Although people’s thoughts might seem...
Age at interview: 23
Sex: Female
Age at diagnosis: 14
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I think it’s important to make the person feel like, like they’re an equal to everybody else, you know, everybody on this earth is of equal importance, whether they’ve got an illness or not, and although they’re struggling with their feelings and their thoughts at the moment, and although they’re maybe not rational, you have to remember that they’re completely real to the patient, to the person who’s suffering, and you need to try and give that credit and understanding rather than demean it. So just listen to what they have to say and try again, as of the parents, try and work with them because it’s only going to work when they do it for themselves, you can’t force getting better on somebody. They have to do it from, for themselves, so you need to work with them and keep them safe until they get to the position where they can say, “Right I’m going to do this now.”
‘Look beyond weight’
Many people we spoke with had come across health professionals who had the wrong facts about eating disorders. A common misconception people came across was the idea that people with eating disorders were always very underweight. Many had found this made it hard to get treatment and support or even being taken seriously by their doctor. Sometimes the doctor hadn’t looked for further eating disorder signs such as behaviours and thoughts if their weight was not severely low. Katie emphasised how important it was for all health professionals to understand that eating disorders are about emotions and behaviours, not just about weight.
Zoe felt that GPs struggle to recognise the psychological symptoms of eating disorders and focus...
Zoe felt that GPs struggle to recognise the psychological symptoms of eating disorders and focus...
Age at interview: 23
Sex: Female
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I think a lot of education in sort of mental health issues more generally would be of benefit for GPs, especially ones who, I guess, are slightly sort of more old school. I don’t think they appreciate the severity of mental health problems. And I think especially with eating disorders, something that’s is a problem is not only being underweight but kind of the other side, so binge eating, bulimia, that side of things. I think because the individual is not underweight physically they may not be that unwell, I think that’s not to say that, you know, they’re not very unwell like psychologically they are. And I think GPs probably struggle to recognise that side of eating disorders even more than the anorexic side. And yeah, I think they could do with some sort of education on the sort of similar processes that are going on in both of them.
Rebekah wanted doctors to be more aware of the range of different eating disorders. Suzanne reminded professionals that some people might only have some signs of disordered eating rather than a full blown eating disorder. If recognised, these people could be helped earlier.
Some young people felt that the only way for them to be taken seriously and be able to access eating disorder services was to lose more weight. This had serious consequences as people knew from past experience that the more weight they lost, the harder it was for them to be able to seek or accept any help (see ‘Realising something was wrong and seeking help’).
More information about mental health services would have helped Nico when he was admitted to...
More information about mental health services would have helped Nico when he was admitted to...
Age at interview: 17
Sex: Male
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The other things that kind of would have helped was knowing that there was support out there through CAMHS [Child and Adolescent Mental Health Services], like I had no idea what CAMHS was. When I was admitted to the inpatients’ unit the nurses wouldn’t even tell me what CAMHS was because they were scared of my reaction of the term ‘mental health’. Which to be honest I was scared of the term ‘mental health’ at the time. Now it doesn’t scare me at all and I’m sure that kind of there are people out there that are still scared of the term ‘mental health’ but then again kind of one in three GP appointments are regarding mental health. So walking down the street one in three people have probably got a mental health problem. I know it’s a statistic that says one in ten people, but to be honest yeah, it’s like if you’re watching this and you don’t see yourself as kind of having kind of any kind of issues, but you know, you think that you’ve got a friend or you know somebody, you just kind of need to take out that time to kind of show some emotion to them. ‘Cos in the sense of kind of physical health where it’s physical things that repair them, it’s emotional things that kind of often repair emotional health problems like people with eating disorders.
‘Develop expertise and knowledge in eating disorders’
Some people found that their treatment had been delayed or that their diagnosis was poorly explained because of lack of knowledge or understanding of eating disorders. For many, a school nurse or GP was the first point of contact. This first contact with services was often a huge step for a young person and the way they were treated at this point could have a lasting, positive or negative, impact. They felt that it was important for health professionals to realise just how hard asking for help was and to help nurture and support their confidence to stay in contact with services.
Fiona-Grace urged GPs to learn more about recognising the signs of eating disorders. Zoe emphasised that professionals needed to react quickly when there was a problem. Overall, people emphasised that “early intervention was key”. This could be achieved when health practitioners were knowledgeable, well-trained, sensitive and proactive. James urged doctors to be more aware of men and eating disorders when they assess young men coming to their clinic (see
‘
Myths about eating disorders’).
Zoe emphasised the importance of getting treatment early. GPs need to understand eating disorders...
Zoe emphasised the importance of getting treatment early. GPs need to understand eating disorders...
Age at interview: 23
Sex: Female
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I think one good thing is early intervention. I think as soon as I think this is more kind of at GP level, primary care, I think as soon as you kind of get into child and adolescent services they’re sort of, they know a lot more about it. And I know it’s hard for GPs ‘cos, obviously, their job, they’re not mental health professionals but I think early intervention is the key ‘cos both times I think the thing that made the difference between time one and time two for me, was that time two I was just about able to not fall totally victim to anorexia because I was able to get into some very good therapy before my weight got too low. I think if people are allowed to kind of pootle along at home without too much in help I think that things just spiral out of control and I mean the research says that all the lower the longer you are at a low weight, the less good the outcome is. So I think if someone presents to a sort of GP with possible anorexia it needs to be treated quickly, seriously, like even if they’re not that underweight, it won’t be long before they are and that’s when they’re really underweight, that’s when it’s harder to get back up. So I think early intervention is the key.
And yeah, I’d I don’t think I think if it gets to the point where an adolescent has to be hospitalised, I think something’s gone wrong in terms of, if it’s their first time round, I think things can be done without… But I think things should be done to prevent them getting into hospital because I don’t think any, I think if you can get in there early it will be better. I think by the time you’ve gone through the hospital thing and seen anorexia, the real face of anorexia, I think it’s a lot harder to get back out and the longer it gets ingrained. So really early intervention, yeah.
Last reviewed October 2018.
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