Self-harm: Parents' experiences

Mental health assessment, diagnosis and treatment for self-harm

Young people who self-harm may need assessment by a mental health specialist, particularly if they have been admitted to a general hospital following self-harm. An assessment can help to identify any mental health problems so that the young person can receive appropriate help or support. The mental health specialist will try to work out if the young person is still at risk from self-harm and what help they need. In some cases, the young person may be given a specific mental health diagnosis.

Sarah Y was keen for a psychiatrist to assess her daughter when she was admitted to a general hospital after an overdose. Alexis worried that her daughter was ‘labelled’, but she thought her daughter wanted a diagnosis. ‘I think my daughter wanted to be bipolar’, Alexis told us. She wondered whether her daughter ‘at that stage needed a reason for why she was feeling like she was feeling’. Susan Z’s daughter was diagnosed with borderline personality disorder, but at first refused to accept this as she thought she was depressed. Susan was pleased when she did accept the diagnosis because then she could get the right treatment.

Alexis didn’t want her daughter ‘labelled’ with a diagnosis, but also thought a diagnosis could explain her behaviour.

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Age at interview: 50

Sex: Female

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But [sighs] so we went and that morning we saw this very young, dynamic psychiatrist in a local private practice and his side-kick, a psychologist. And suddenly you’re all being given labels. I mean he spoke to me and my daughter and then, obviously, you know, I withdrew and he spoke to my daughter about what was going on and how she was feeling and then they called me back in. And suddenly you’re being, words like bipolar are being used and, like these really, these words that are so scary and I think I remember him because, obviously, he’d been asking my daughter about my ex-husband, my daughter’s father and my son and he was using words like I’ve forgotten the words now, he, I mean he, he categorised all of us and so I was the overprotective mother, okay. Charming psychopath, that was, my, apparently, [name] father was a charming psychopath and my son possibly also too. I won’t, actually, make any comment about that [laughs].

But you’re suddenly being labelled, but actually, in a way, you want a label because you want an answer and so he’s saying to me, “It could be that your daughter is bipolar.” Bearing in mind my daughter is sixteen, and there’s part of me thinking, “Don’t give her a label.” And there’s part of me thinking, “Give her a label.” Because that would give an explanation.

A diagnosis of borderline personality disorder meant Susan Z’s daughter could now receive dialectical behaviour therapy (DBT).

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Age at interview: 58

Sex: Female

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But she was also going to, having been referred to another psychiatrist so she was having another consult there. So she went back in October and I think it was about January this year that she had the diagnosis again of borderline personality disorder.

And she started off again, you know, saying, “It’s not that. It’s not that.” And but then, she started to settle down and she said, she’d you know, she’d looked online and she’d looked into it and, actually, she, you know, had to admit that, you know, she fits the, she fits the criteria and what have you. We did look into it to see what kind of therapy she was already getting because we knew she was being treated for depression and we weren’t sure whether that was going to be the right kind of therapy for the new disorder. But, apparently, the therapist she is seeing does do dialectical behavioural therapy* [DBT] so, you know, that seemed spot on.

* This is a form of therapy (using individual and group work) that helps the young person to learn skills to manage their emotions, cope with distress and improve their relationships. DBT helps the young person see that their suicidal and other unhelpful behaviours are part of their way of coping with problems and encourages them to develop more helpful behaviours and solutions.

Sarah Y’s daughter saw an educational psychologist, but Sarah thinks she should ‘have pushed sooner for psychiatric evaluation’. She says it’s not socially acceptable to say ‘My child is odd.’

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Age at interview: 42

Sex: Female

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In hindsight I look back and think, yeah, actually maybe I should have pushed sooner for psychiatric evaluation. But as a parent you don’t, it’s when you know your child has learning difficulties and they’re sort of, they have difficulty socialising and things, you, they’re seeing educational psychologists, you know, throughout their education you think maybe this is a normal part of being like slightly sort of autistic or on the Asperger’s spectrum kind of thing or that sort of thing.

But where does the line come between that and other mental health issues and, as a parent, you try and you do try and say, “My child is normal.” It’s not socially acceptable to say, “My child is odd. There’s something different about them.” You accept that there’s something a bit different but they’re normal for that category or that category and it is very, well, I, as a parent, think it is very difficult to say where’s that line between socially inept or, you know, Asperger’s, autism, you know, and all the degrees of different. Well, they’re classed as learning difficulties and [sighs] well, I just find it very, very difficult to say, where is that line and when, as a parent, should you assess it to say, she needs psychiatric evaluation.

You know, and they’ve seen educational psychologists and stuff because of their learning difficulties I think I just thought well, if they thought something was odd they would have then said, “Well, maybe we need a psychiatric evaluation as well.” But nobody ever suggested it so you sort of don’t think of it, if that makes sense.

Joanne’s daughter was given several different diagnoses. ‘I think you could tick every diagnosis in the mental health dictionary and she’s probably had it’ Joanne told us, ‘but at the moment we’re hoping to get a second opinion because we want to make sure that the care she’s getting is right for her.’ Jane S and Sharon both thought that their child’s depression gave rise to the eating disorders they developed. Jane said, ‘If only that could have been looked at and understood and perhaps treated earlier then she might not have had to go through the whole life-threatening eating disorder.’ Fiona wanted help for her son but psychiatrists ‘decided he was fine’ and discharged him from hospital. Other young people did not need treatment for mental health problems. Roisin consulted a private psychiatrist who decided that her daughter didn’t have a mental illness and didn’t need any therapy.

Local services were ‘getting nowhere’ diagnosing Ann’s daughter. She was admitted to a hospital further away for assessment but no one from the local team came to the discharge planning meeting.

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Local services were ‘getting nowhere’ diagnosing Ann’s daughter. She was admitted to a hospital further away for assessment but no one from the local team came to the discharge planning meeting.

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Age at interview: 47

Sex: Female

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I’ve lost count of the number of times that she was admitted to hospital, whether it’s for overdose, for cutting but, ultimately, because local services were getting nowhere with diagnosing her and getting to the root of the problem, they really didn’t know and they sent her off, they had her admitted her to a hospital about an hour’s drive from here that was an assessment unit and she was supposed to be there for six weeks. Those six weeks turned into I think it was about four months, maybe even longer, five months and that was at a time that she should have been studying for her A-levels and she was so unwell that she couldn’t actually sit her exams. But because she had been doing so well at school beforehand she was awarded her A-levels based on the results so she’s actually come out with some very decent qualifications.

That hospital admission actually gave us several diagnoses really and traits of different personality disorders, anxiety disorder, depressive disorder, schizoid traits, so it was a little bit surprising that given all these different diagnoses that, when she came to being discharged in there, there was nobody from our local mental health team that went to her discharge planning. There was me and her dad and again, they sort of told us the diagnosis and off you go home.

Fiona’s son ‘fooled’ the psychiatrists into thinking he was fine.

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Age at interview: 57

Sex: Female

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So I put out another thing and he was actually sectioned [kept in hospital under a Section of the Mental Health Act] so he had a psychiatrist and things assessing him and I saw them and I said, “I don’t want to teach you to suck eggs but he will say everything you want him to say, [ba ba ba ba ba].” And they were like, “Oh yeah, yeah, you know, here we go, mother knows best.” And I said, “No, you know, believe me, I’m not saying I want him permanently sectioned but please just be aware. I’ve seen his patterns with other psychiatrists and psychologists and I’ve had a couple of them say to me, ‘we can’t deal with him because he he can second guess us.’” And sure enough, he, they decided he was fine. There was no problem with him and he came out, they let him go and didn’t tell me that they were letting him out and he went straight out. He phoned me. He said, “Fooled them, mum. They don’t think there’s anything wrong with me. More fool them.” And then tried to steal cars so that he could carry on with his drive down to Southampton. He was at a pedestrian crossing, pushing the button so the cars had to stop and trying to get the drivers out so he could take their cars.

So [sighs] you know, he, I don’t know, he needs help. He needs more help than I can give him but I don’t know where to turn for it because he runs rings round the professionals.

Treatment
Parents told us about different treatments their children had received for mental health problems (see ‘Mental health problems’). Apart from medication (see ‘Medication’), the main treatments mentioned were cognitive behaviour therapy* (CBT) and dialectical behaviour therapy** (DBT). CBT ‘really helped’ Roisin’s daughter and she hasn’t harmed herself for over a year. Erica thought DBT was ‘absolutely amazing.’ It taught her daughter techniques which she still uses for coping with thoughts and emotions.

Roisin’s daughter was helped by CBT (cognitive behaviour therapy).

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Age at interview: 45

Sex: Female

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Did she tell you anything about why she thought CBT was helping her? What it was that she was learning there or doing there that that was having that impact?

Yeah, yeah, she said it was mainly about dealing with negative thought processes and, obviously, sort of negative thought processes tend to compound each other and negative thoughts tend to lead, lead to particular sorts of behaviours and one of those behaviours would be cutting or burning and the need to, to hurt yourself, feel some sort of pain. So really it was just the, the dealing with the negative thought processes and preventing it getting to a point where it caused the acting out and the behaviour. So it was that really. That’s what she said.

But it took a year.

Yeah.

Of weekly sessions.

Yeah, yeah and that wouldn’t have been available on the NHS, weekly sessions, for that length of time and, if he hadn’t had the insurance, that would have been very expensive, you know, and that makes me really cross, actually, that there’s lots of people out there, lots of young people out there, who weren’t lucky enough to be in a position to get the help that she got.

Philip and Mary’s son was offered ‘mentalisation’ and use of the complex needs service, but he was not keen on this. Debbie’s daughter had counselling through her school but Debbie thought it didn’t target the main issues. It was more about building her self-esteem and confidence, but the self-harm continued. Her daughter later had six sessions of help for obsessional compulsive disorder, and is now on a DBT programme, which Debbie says is very good.

Other sources of help
Some people find other sources of help outside the NHS. Fiona said the most helpful thing for her son was a Christian rehabilitation community. Sometimes people turn to ‘alternative therapists’. Susan Z took her daughter to a kinesiologist. Sarah Z’s daughter was helped by a hypnotherapist who was one of Sarah’s friends.

Fiona’s son said he didn’t want to die any more after his stay in a rehabilitation community.

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Age at interview: 57

Sex: Female

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So, institutionally, nothing has really helped him or helped us. What did help him was he went into Betel, which is like a it’s a Christian community. It’s sort of rehab but it’s a Christian community and that’s where he sort of really turned around a lot and it’s run by ex-alcoholics and drug addicts, who are recovered, for alcoholics and drug users and it’s absolutely brilliant. They have no drugs at all, I mean as in legal drugs. People go in and for two weeks or however long it takes, they do cold turkey.

You’re with somebody twenty four hours a day, which is fantastic, because in other rehabs you’re not. So they have like a buddy system here and then they integrate you back into society so you, you’re always in twos, so you’re never alone to be tempted and then they start doing things like leaflet drops. They’re a charity so they get all their money by doing work. They work in gardens. They’ve got furniture shops and things like that and so for my son, he was having his rehab but learning to integrate into society, which in another rehab you’re not. You’re in this bubble away from the world and then you’re put back out in the world with not really any support other than, “Well, we’ve got these courses or these drop-ins if you want to.” So it’s all left to you. With Betel it’s they’re with you. You’ve got somebody with you twenty four seven and as you get stronger and more recovered, you then become what they call a responsible and take on people. And they can all relate, it doesn’t work for everybody, nothing does, but it works for a huge amount of people because, when they sit with somebody going through cold turkey, they know, when the person says, “I know what you’re going through.”

Yes.

That they do and this is something I’ve always said to my son, “I can empathise. I can see the horror. I can share the pain but I actually, have no idea what it’s like to have such a craving or to go through the cold turkey because I’ve never personally done it. So whilst I can support you, I don’t really know what you’re going through.” And that that really helped him and that’s what got him much straighter. As I say, for two and a half years, he was in there for just over two years, then he came out. It’s a, you can be in there as long as you want or as short as you want. Some people go in, can’t handle it, out within a week or two and then often go back in and they’ve got, obviously, the ones that have come through and are now full leaders have been there for years. So that was the most helpful thing for him.

And when was that?

He came out of there November last year but before that, there was nothing really that worked or helped him because, as I say, even though we got him into both private and public rehab places, it was such an unreal world and, like I say, it works, might work for some but it certainly didn’t work for him.

Because all it did was take him out. They either kept him so drugged he had no idea if he was Arthur or Martha or, as he openly says, he played the game knowing he was there for six weeks, walked the walk, knowing the minute he came out, he would contact his people and go back and would then have access to killing himself, if, he’s always had this thought. It’s always threaded through, until February this year was when he turned and said, “You know what mum, I don’t want to die anymore.”

Susan Z’s daughter enjoyed kinesiology, but Susan was upset when the kinesiologist suggested that parents could be the cause of their children’s problems.

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Age at interview: 58

Sex: Female

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I had a friend over here, who had suffered from depression, and she had had kinesiology, which she found really helpful. So [my daughter] had, so my daughter has just been to a kinesiology session and, apparently, they diagnosed that she was she had a vitamin B12 deficiency.

Yes.

Which is interesting because some of the symptoms of that are lethargy and depression and personality changes so hopefully, you know, that might help a little bit as well.

What is kinesiology?

It’s connected with, it’s a little bit like acupuncture, yoga. It’s to do with energies in the body. They’re supposedly, not that I’m a sceptic, they supposedly can detect, you know, energy flows in the body and blockages and things like that. And I wouldn’t necessarily sort of go with it except that my friend almost had a miraculous recovery from depression because of it and another friend was diagnosed with gluten intolerance through it and, you know, and that helped her a lot. And I thought, well, won’t hurt to try it. Won’t hurt to try and but again, we had a bit of an experience with kinesiology over here, which I think she quite enjoyed, she quite liked it but I hated it.

We went to the kinesiologist that my friend had been to, and I went with my daughter and I was a little bit early so I just sort of was waiting in the in the room and then I said, “Oh well, I’d better go now then, you know. You don’t want me around.” And she said, “Oh well, no, I can’t handle it because of, you know, I’m dealing with energy flow so I can’t handle another energy.” That’s fine but then she also said, “And, you know, we really, it’s really hard for young people to sort of open up in front of their parents because, despite our best intentions, we’re often the cause of most of their problems.” [laughs]. So I thought that was, well, I was, because I was feeling guilty and anxious and already so I felt terrible so I, just, I was really upset about that but I didn’t say anything to my daughter, you know. And she seemed to get something out of the session but at least didn’t dislike it. So she obviously was confident enough to go back and have another session in Australia and that seemed that seems to have turned something up and that’s good.

A few parents told us about private treatment they had organised for their children. Charles’s son was seeing a private clinical psychologist once a week for CBT, in addition to his treatment from the Child and Adolescent Mental Health Service team. Charles said one of the advantages of private therapy was that he and his wife could have a session for themselves where they could talk about their son in his absence. Sarah Z and Nick didn’t want to go through their GP, so they arranged for their daughter to see a psychologist privately. They said she was ‘enormously helpful’ and gave their daughter a ‘tool-kit’ of strategies to avoid self-harm. The CBT which was so helpful for Roisin’s daughter was provided in a year of weekly sessions paid for by her husband’s health insurance (see clip above). Jackie wanted urgent treatment for her daughter but was horrified at the cost of private counsellors. She was prepared to pay, but her daughter decided she wasn’t ready.

Experiences of mental health specialists
Some people told us about their experiences with clinicians and others involved in the young person’s care. When Alexis’s daughter started self-harming she saw a private psychiatrist. Alexis described her as ‘a crazy person’: ‘She just wasn’t helpful. She just sort of looked at me, she goes, “Well, the way I deal with this is just tell her, ‘look at your beautiful body, you know, you don’t want to do this, do you?’” And you’re thinking, that is too simplistic. I just could tell that my daughter was not going to be able to relate to this woman.’ Jane S’s daughter had a ‘really nice psychologist’ who was very helpful and understanding. Audrey’s young husband was treated by two very different doctors, one of whom was ‘brilliant’.

Audrey thought the psychiatrist who saw her husband was ‘as much use as a chocolate fireman’. They changed to a new psychiatrist who was ‘brilliant.’

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Age at interview: 30

Sex: Female

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And it was our GP who put us in contact with the psychiatrist and our psychiatrist was about as much use as a chocolate fireman. He was one of these ones that, “I’ve got four hundred and fifty patients and I’ve not got time.” Well, I’m sorry. I don’t care about your four hundred and forty nine other patients. I only care about my husband, you know, and that was maybe selfish but, at the end of the day, I’m living with that person. That person is the father of my children, of my two children. You know, I want my husband fixed. I’m not interested in anything else. I just want my man fixed and it’s as simple as that and I mean I don’t know if I’m, call me naïve but I’m a huge believer in if you’re gonna go into a public sector job, you have to be a people person. You have to you have to want to help and he just wasn’t one of those people.

It was a case of in the room, out the door, type of thing and that’s no good when you’re dealing with mental health. It’s no good, especially when you’re dealing with someone who suffers from post-traumatic stress as well as self-harming as well as depression as well as severe anxiety, you know, and panic attacks. So it’s nae good to man nor beast, you know. It’s no good.

So we had changed our psychiatrist, through the help of our mental health worker and our [mental health charity] worker and it is complete chalk and cheese. He listens. He deals specifically with addictions. He is an addictions psychiatrist so he deals with people who have had addictions like drugs, alcohol, I don’t know if possibly sex might be one of them, food, any form of an addiction, self-harming, you know, he deals with things like that. And he has a much better understanding. He actually listens to my husband when he goes in and asks, “How are you feeling? What makes you feel this way? Why do you think you want to do this? Why do you, like why do you do what you do?” And he gives him coping techniques. He tries to give him just little strategies in which to interpret every day that can sort of help make his day a wee bit better. It was this psychiatrist that actually mentioned the mood stabiliser. He wanted to try and get him on this mood stabiliser so that the CBT therapy, when it did start, would have a much better effect than just putting a red flag to a bull, type of thing.

So [coughs] he’s been brilliant and he, unlike our previous psychiatrist, he will see my husband, every three weeks he sees him and he does see him every three weeks. And if he can’t make the appointment, he already he already reschedules the appointment so that we don’t have to worry about rescheduling. He already reschedules the appointment and it’s just it’s so much better than it was before.

Sharon describes why she thought the psychiatrist treating her daughter (who had an eating disorder as well as self-harming) was ‘ideal’.

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Age at interview: 37

Sex: Female

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What was it about the psychiatrist that you thought was ideal?

He’s I knew she wouldn’t be able to twist him round her finger. I could tell from the way he spoke to her that she wouldn’t get away with just shrugging her shoulders like she does because he’d just say, “Well, that’s not an answer is it.” And that, I don’t know, it was just his demeanour. It was firm but you could tell he cared. You can tell that he’s got experience. He’s been doing this for a long, long time and he wouldn’t get angry or frustrated with her if she wasn’t talking to him or, or anything. He’d voice his opinion. He’d talk to her and he’d ask her questions and I don’t know, it was just his, just his general demeanour. I knew that she wouldn’t take to him because of how she was but I knew that he’s the best thing for her, it’s just the, just the way he comes across.

He’s very fair and he always asks her opinion and asks her and involves her, whether she’ll voice anything or not, she’s always involved and he always makes a point of saying, “This is, you know, you, you can talk about this. You can ask me things. You can tell me things. If you want me to shut up and go away, tell me to shut up and go away and I will. If you don’t want to talk to me today, that’s fine, just let me know.” So she’s not pressured all the time and he, he keeps you up to date and he listens. He listens to her. She doesn’t think he does but he does. He listens to her opinions and he listens to, to mine and her father’s opinions and talking about things that have happened in the past. Things like, she was very concerned she wouldn’t be allowed to stay vegetarian. He said, that’s not an issue as long as she’s eating healthily. She was also very concerned that they’d make her gain an awful lot of weight to be a normal, as it were, weight when she’s always been a slim build but he’s listened that she’s always been a slim build. I took her, her red book from when she was a child, photos of when she was younger and more recently, like a few years ago, five years ago so they can see that she’s always been a slim build and he has taken that on board. And he does talk to her about it and he always explains to her why he’s doing what he’s doing and what he thinks they should be doing and then how does she feel about that, whether she answers or not, but he does engage with her and he’s, I don’t know, he’s just good. I like him.

Jo-Ann praised the community psychiatric nurse who looked after her daughter. Audrey thought the woman from a mental health charity who helped her husband alongside the GP, psychiatrist and mental health worker was ‘indispensable’.

The CPN (community psychiatric nurse) had a good relationship with Jo-Ann’s daughter and was very understanding.

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And she has an ongoing relationship with a CPN does she?

Yes, she does, yeah.

How does that go?

That’s pretty good. The CPN is very, very honest with her and will, she won’t buy into what she’s saying. She will challenge her. Sometimes it doesn’t go down very well, as you can imagine. Sometimes she’s very angry with her but, on the whole, they have a trusting good relationship and that’s really important. It’s important for me to know that somebody is going to come in and they’re going to speak to her and I’m not going to come back to her being distressed and cutting, you know. It’s quite important for, for my piece of mind as well as hers.

That’s the only thing about the crisis team, you get different people each time so you don’t you don’t get, each day you get a different person speaking to you. Sometimes people are very caring and empathic, sometimes they’re not so, sometimes they’re quite brusque and that’s very difficult then because then she doesn’t feel cared about and she feels that they’re just trying to fob her off, you know.

So that’s, that’s quite hard but yeah, her CPN, they’ve got a very good relationship, thankfully. In fact, this CPN took her on. She was meant to have a different one and you could tell right at the beginning, it wasn’t going to work and so this CPN works with a lot of people with borderline and understands it a lot more and so it’s really good. And she doesn’t push me out either. She understands that we are living together. We have a relationship and that we bounce off each and that one affects the other, whereas with the other therapists it’s, “Well, it’s not about your mum.” And they’ll say to me, “Well, it’s not about her.” And it’s, really, sometimes it is, you know. It’s very difficult so she’s very understanding.

A mental health charity worker was ‘an absolute godsend’ for Audrey and her husband.

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Age at interview: 30

Sex: Female

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It is so amazing to have the support services such as [mental health charity] that are just indispensable, they really are. I mean I do not know where we would be if we didn’t have our worker from [mental health charity]. She has been an absolute godsend, she really has and I, you know, I thank Him every single day for having someone like [name] in the world because I literally do not know what we would have done without her. She doesn’t speak to my husband like he’s an idiot. She doesn’t speak down to him. She doesn’t speak to him as though he’s stupid or he he’s just someone that, you know, has done something stupid and should be treated so. She understands him on a level, you know, and they have an understanding between the two of them. My husband has trust issues, very, very high trust issues and it takes a lot for my husband to let you in and with our [mental health charity] worker, she laid her cards on the table from day one. She didn’t make any false promises, which is what we’ve been used to before. She didn’t patronise us. She treated us as a family. She treated us as a family that needed help and she has earned the respect and the trust from both of us and if she says she’s coming out, she comes out. She comes out every week without fail. She is on the phone twenty four seven, if need be. She will actually, go out of her way to make sure that we are okay and that’s in every sense, you know. That’s in the sense of our children. That’s in the sense of my husband, it’s in the sense of myself.

And she has arranged goals for [my husband] to meet. She has arranged ideas that my husband never knew were possible before. She has helped put steps in place that he then has something to look forward to, you know. It’s all about helping him change the way that he thinks and think that his life doesn’t have to be the way that it always was. So and she’s also, going to do CBT therapy with him. She has also, off her own back, investigated and looked into and researched all about PTSD.

And she’s wanting to do some work with my husband on that as well. I mean this is this is not even in her job description. She doesn’t have to do this kind of stuff and yet off her own back, she does it. We are so lucky to have her alongside our GP and our new psychiatrist and our mental health worker. I mean without them, now that we have a team that is working so closely together to help, it makes all the difference. It’s brilliant and I’m just glad that my husband has got all the support that he needs and that he’s getting it and that’s it.

* CBT is a psychological treatment in which the links between thoughts, behaviour and feelings are identified. Young people are encouraged to develop strategies to manage unhelpful thinking processes and behaviour.

** This is a form of therapy (using individual and group work) that helps the young person to learn skills to manage their emotions, cope with distress and improve their relationships. DBT helps the young person see that their suicidal and other unhelpful behaviours are part of their way of coping with problems and encourages them to develop more helpful behaviours and solutions.

Last reviewed December 2017.