Ann

Age at interview: 47

Brief Outline: Ann’s eldest daughter has a long history of self-harm and mental health problems. Ann says it’s a very lonely world parenting a child who self-harms and would like to set up a support group.

Background: Ann, 47, is a nurse, married with three children. Ethnic background: White British.

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Ann first noticed a cut on her daughter’s arm when she was 16. Her daughter had become withdrawn and admitted that she didn’t like life and cutting made her feel better. Ann took her to the GP, who referred her for counselling. The counselling service said she was too young for them, but the CAMHS service said she was too old and referred her to adult mental health services, who referred her back to CAMHS because she was too young. It was only when Ann threatened to call the local press that an appointment with a CAMHS psychiatrist was arranged. Her daughter was put on antidepressants but the self-cutting continued and she then took an overdose and was admitted to the hospital adolescent unit. Ann and her husband felt confused and angry that no one told them how they were supposed to deal with self-harm. 

After several admissions their daughter was sent to an assessment unit for five months, after which she was discharged home with diagnoses of personality disorders, anxiety disorder, depressive disorder and schizoid traits. Her difficulties were said to relate to several abusive relationships in her childhood (outside the family). Ann took two months off work to look after her, but the self-harm continued and her daughter was admitted to a psychiatric hospital where she tried to hang herself. Following this she was transferred to an eating disorder unit over 100 miles away. For the next 16 months Ann and her husband travelled there every Sunday to visit her. This took a huge toll on family life, especially for the two younger children who had to be left with relatives; it also caused financial difficulties. On discharge she had to live near the hospital, and again Ann took time off work to support her, but once her daughter was 21 she came to live in her own flat near her parents. On one horrific occasion she cut her neck very badly. She is much better now and has not overdosed recently, but continues to cut herself. 

Ann has had very different experiences with the various services involved in their daughter’s care. One hospital was excellent and involved the families of patients, but at another there was no communication with the family apart from family therapy sessions which Ann found destructive. She was made to feel that her daughter’s problems were her fault and her husband was accused of not showing his emotions. She thinks there should be better out-of-hours services for emergencies. Ann was offered counselling through her work on two occasions but stopped after a few sessions because of the counsellor’s unreliable time keeping. Now if she is upset she goes to bed or does housework, which she finds therapeutic.

Ann’s husband provides calm support for Ann and their two other children. Ann says he is frustrated and feels marginalised because their daughter confides in her mother rather than him. Ann thinks they were wrong to try to protect their younger children by keeping the self-harm secret at first, but now they are older she thinks that because of what the family has gone through they are more aware of other people’s thoughts and feelings. She is proud of the way they listen and give advice to their friends. The family are now able to talk about any subject. Ann has not discussed the full extent of their daughter’s problems with other members of the extended family, but they try to be supportive. 

At work Ann was supported and allowed time off when she worked on a ward, but her current manager is less sympathetic and has denied her carer’s leave. Ann searched for help and information on the internet, but says she would prefer to share experiences in a group with other parents. Nothing like this was available, so she hopes to set up her own parental support group eventually. 

Ann says she still doesn’t understand self-harm. People have to learn how to cope with things in a constructive manner, but this is hard. She would like to see education programmes in schools to encourage children to talk and listen, and suggests that each area should have a psychiatric admissions unit so that self-harm patients wouldn’t have to go to A&E and general hospital wards where staff aren’t trained in mental health. She advises clinicians to ask parents for their thoughts and opinions, and to listen to them, and ask how they are coping. Her advice to parents is to keep calm, talk to your child, don’t be angry and don’t judge. Don’t be afraid to say when you’re upset, otherwise you might come across as uncaring. Don’t ignore signs of your child’s distress, but go to your GP and persevere until treatment is offered. She also says it’s important not to forget your other children.

Ann thinks the reason why her daughter was struggling with life was down to an abusive friendship.

Eventually, [sighs] I think CAMHS was still on the scene but she was being handed over to adult services because whilst she’d been in hospital she’d actually gone through her eighteenth birthday. So we had the intervention, the young intervention team assess her and that was the first time really that somebody had said to us the reasons why or maybe the reasons why she was struggling with life and that was down to an abusive friendship with another child that she’d known since she was about two and a half and they’d grown up together and we’d gone on holiday together and two families had been very close. 

I still don’t know to this day all the wrong doings were within that friendship, for want of a better word. All I know is the consequences that we’re dealing with from it in as much as you’d got somebody with a very strong personality being friends with somebody who was vulnerable and who didn’t know how to or want to say, no, in situations that made them feel uncomfortable.  

And that’s hard because you know that when they were together as friends you think that you can trust your friends and friends look out for one another but not in that not in that friendship. And that’s been very hard to deal with.

Ann’s daughter cut herself while having hallucinations.

I can remember her being up in her bedroom one night, it was just after this and she started making a noise in the bedroom. I went up and she’d cut herself but she was actually ducking and telling these things to go away and I was looking around the room and I’m thinking, “What?” And I could see that she was bleeding but she, it was like she was talking to somebody that wasn’t there and then she started screaming at me just to take them away and get them to go. And, apparently, she’d seen black shapes and things coming out the walls. And I didn’t know what to make of it and when I flagged it up with her psychiatrist, you just got the nod of the head and, you know, but nobody came back to us with any anything.

Ann’s daughter was given several diagnoses. She cut herself during an episode of ‘dissociation’ (feeling detached from reality)

Currently, they say that, well, the latest diagnosis is that she’s got borderline personality disorder. She has got an, it’s what they call EDNOS, which is eating disorder not otherwise specified and that’s just because she dips in and out of different eating disorders and just generally has a very poor relationship with food. She either wants it or she doesn’t and it can be quite challenging for her, for everybody really.  

Anxiety disorder, dissociative disorder, she can dissociate, which scares the life out of me because there’s no predicting when it can happen. She can be sit here having conversation watching the TV and then all of a sudden, she’s not there and it’s happened when she’s been out and about as well and she’s gone walking in the middle of the road, not really knowing what she’s doing. She cut her neck, we think that was during an episode of dissociation. She doesn’t remember doing it.  

And there’s been other times when she’s tried to put ligatures round her neck and she doesn’t remember and times that she’ll talk, you know, she’ll be talking, you can’t hear what she’s saying, but her lips are going ten to the dozen and she’s having this conversation with somebody and it’s odd but that hasn’t happened for a long while. 

Ann and her husband told their other children very little about their sister’s self-harm. Ann didn’t tell her husband everything but she found this hard.

The other side of that is that we’ve got two other children. Me and my husband knew what was going on but we didn’t tell anybody else, don’t know why. Was it because we didn’t know much about it ourselves, we didn’t understand it? I didn’t have the answers to why she was doing it.

Oh, hang on a second, I haven’t talked about the other two children have I. The information that we gave them, looking back, was just minimal. They knew that she was a bit down and was struggling with things. That’s as much as what we told them and as much as what we knew. 

I know that he feels bad that it is me that has to deal with a lot of what she comes out with. It’s hard for him, very hard for him. It’s probably our, affected our relationship as well. 

In what ways?

In ways that she’s confided in me things that she doesn’t want me to tell anybody else, including him and something happened recently actually that he became aware of something that I’d been told that had had quite a negative impact on her and I’d actually struggled to keep this to myself and deal with it myself but, for one reason or another, it came out and I think he was hurt that I hadn’t actually confided in him but I think there’s enough people been hurt. I don’t like hearing some things that she says and I struggle to cope with some of the things that she tells me that has happened to her and I think well, why make somebody else’s life a misery. Why upset somebody else? So I just keep it. I just keep it. It’s hard. 

Ann didn’t tell her relations everything. Some didn’t understand and some tried to help but her husband’s sister blamed her.

And other members of your extended family who know. How have they reacted?

Differently. Only one set of grandparents and they’re fantastic and they’ve tried to understand but they don’t. They get books out the library and they’ll read and, you know, and they’ve spoken I think a couple of other grandparents who’ve got grandchildren and they try.

I’ve got one sister, who is absolutely fantastic and I can tell her anything and she just sits and listens, but I don’t tell her everything. Nobody knows the full extent of anything except me and my husband. And then I’ve got another sister who has been fab but I think she has found it a bit too much to cope with at difficult times that I’ve gone through and, you know, and I’ve relied on her and she sort of let me know that. So now I don’t, you know, I don’t, just say, “No, everything is fine.” I don’t divulge much at all, you know. We have good days. We have bad days. Let’s leave it there. So yeah. 

On [my husband’s] side of the family, his sister blamed me really. I have a wonderful three full page e-mail from her at the outset because, when my daughter was admitted, somebody rang up the next morning pretending to be me and got a lot of information. When I rang up and tried to get information, I couldn’t get any [laughs]. Now we can assume that there are huge issues between my husband’s sister and the ward that my daughter was on. There were a lot of problems that she created to the point that she said it was all my fault and did never want to speak to me again. Absolutely fine, okay. I can cope with that.

His brother, they’re lovely, a little bit naïve about the whole thing really. The thing with my daughter, and I think with a lot of people who suffer mental ill health, is you can’t always see when there’s a problem and they say, “Well, don’t they look fab? Don’t they look well?” Yeah, well, actually, just before Christmas they were on about sectioning her. That’s how, you know. Most our response now is, never take a book by the cover. You don’t know what’s on the inside just by looking, you know, at what’s on somebody’s face and doesn’t tell you what’s going on inside their head or their heart and what they’ve been going through the last twenty four, forty eight hours and that goes for the rest of the family really. So quietly supportive they all are and we would have been lost without them really but none of them know the full extent of anything, not by any stretch of the imagination. 

Sometimes Ann’s daughter’s wounds were so bad that she needed to go to hospital.

I just wondered if you could say something about managing the wounds.

Well, cuts come in all shapes and sizes and in all parts of the body and, actually, the one that I first saw on my daughter’s arm, I actually didn’t see the multitude that were actually on her tummy and, as a result, she’s got some very unsightly, thick, keloid scars on all part of her body, the tummy, the arms, the thighs, her neck now. Scratches, which is what a lot of them do, and, I think they call it cobwebbing or webbing or something that that’s because, ultimately, that’s what they end up looking like is a very fine cobweb. They tend to heal quite quickly and don’t tend to be too deep and I feel confident just popping a plaster on those. It’s the deeper ones that you have to guard against and I think, when you look at a cut, you know, if it’s constantly bleeding obviously, you need to get somebody to hospital. 

If it’s spurting out then you need an ambulance because they’ve probably hit an artery or something. 

And, thankfully, we’ve never had that. 

As for closing up wounds, because I’m a nurse, I’ve perhaps got a little bit more confidence in doing it but there have been many occasions that I can see layers that have gone through and I didn’t feel comfortable closing that up because I knew it would scar if it wasn’t closed properly and I have no hesitation going to A and E. And yes, they’ll ask why they did it and are they under services and, you know, it can be a pest if you’re there for hours and hours and hours just for a cut but it’s why they’ve done it isn’t it. I think quite often they won’t say why they’ve done it. So for now, we just, well, I use plasters or I’ve got my own little steri-strips, the butterflies. I’m not fond of going up to the hospital at all but it can mean the difference between leaving a scar and no scar. 

At first Ann didn’t tell her other children about their sister’s self-harm because she wanted to protect them.

Looking back I think we did the wrong thing in keeping everything back from them. In the early days, it was about protecting them and [pause 4 seconds] not letting them see what she was doing to herself. I don’t know why. Maybe because we didn’t understand it ourselves, how can we explain it to the other kids if it if we didn’t understand it ourselves and, obviously, with each hospital admission as they arrive, it that gets a little bit harder. They were a lot younger then as well.

Ann is proud of the way her children have ‘embraced their sister’ and become more aware of other people’s feelings.

I think the middle child never says very much but thinks a lot and just takes everything in his stride and, you know, he just try and be open, say, “Look, you know, talk to us if you if you if something is bothering you, then just say it.” The younger one, she I think resents the fact that we didn’t tell them what was going on at the outset but she would have been very young [pause 5 seconds] and I think now that she’s an adolescent herself she she’s got a good insight, doesn’t always understand why her sister does things that she does but there again, they don’t know what we know. 

And I actually think that because this has come into their lives and our lives, it’s made them a bit more grounded and a bit more aware of other people’s thoughts and feelings and certainly, you know, other youngsters that are self-harming and their parents seem to be in the same sort of fog as you like, you know, as they find out that their daughter, I only know of girls that have done that, I don’t know boys, but what, you know, where does it all start and why does it all start. 

 But I’m very proud of the way that the other two have got friends who are struggling with issues and problems and sometimes, when I listen to them talking, you know, you think, I’m very proud actually because they’re giving sound advice. They’re listening. Kids today, you know, youngsters they, I don’t know, a lot of horrible things can be said in the blink of an eye and whatever but these two kids seem very sensitive and receptive to other friends who are talking to them. And certainly will try and offer solutions and they’re not frightened of actually coming to me and their dad and saying, “So and so is thinking this, so and so, what can I do to help? Where can I go? Who can, you know, where shall I tell them to ring?” 

And that that’s the good the good side. I’m very proud of them the way that they’ve embraced their sister. They don’t judge their sister. They don’t understand why she does what she does I don’t think but, like I said, they’re not aware of everything. But as, you know, the advert goes, it’s good to talk and these two kids have really adopted that and we do, we have some very open conversations in our household and quite uncomfortable topics and issues and it’s fine. I wouldn’t want it any other way because I think as the eldest one started with all of this, “I don’t understand why she’s never able to come and talk to us about it and nobody has ever come to us and explained.” So now no no subject is taboo in this household. We talk about anything and everything and I think my kids have helped other kids out there, you know. Time will tell.

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.

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. 

Adult mental health services and the child and adolescent team disputed who should be responsible for Ann’s daughter.

So I took her to the GP eventually, who referred her for counselling. 

So another couple of weeks went by and we’d heard nothing from the counsellor but we then got a letter through the post saying that she was too young for counselling at the age of sixteen. So back to the GP we went with increasing cutting, low mood, withdrawal. They referred her to CAMHS, the Children Adolescent Mental Health Services. New scenario for me, hadn’t had anything to do with CAMHS before but a friend of mine, whose husband worked there, said, you know, “It’s the last thing you want is to get her involved in the system.” But at that point, I didn’t really care. I just wanted help for my daughter. 

Nothing was forthcoming from there so I rang them and asked them what was going on with the referral and to be told at the age of sixteen she was too old for CAMHS and they’d referred it to the adult mental health services and at another hospital. So I then rang that hospital and said what did they do with the referral and they said that she was too young for adult services so and they’d referred it back to CAMHS. So I phoned CAMHS again and they said, “Well, she is too old.” And I said, “So what are we all doing here? While you’re batting referrals back and forth, I’ve got a child who is cutting herself, becoming more isolated and withdrawn and is obviously, in some sort of emotional distress that I don’t understand and who’s going to help us with that? Does it actually take for her to try and kill herself?” And they said, “Well, we don’t really know what to suggest.” 

And my response to that was, “Well, my next telephone call is actually going to be to the local newspaper if somebody doesn’t help us because as healthcare professionals you can’t just bat somebody from one to the other and nobody take responsibility.” And when I used the unfortunate word of press, that’s when I got told that the duty worker would be in touch and she’d actually get an appointment with a psychiatrist within a week at CAMHS. 

But things didn’t really improve. The first thing that they did was put her on quite a lot of antidepressants, which had their own side effects. She didn’t develop a good therapeutic relationship with the psychiatrist and self-harming continued. 

Ann’s daughter was kept in hospital under a Mental Health Act section. Ann later realised it was to keep her daughter safe, but worried that it would go on her daughter’s records.

I wonder if you could talk about what it was like to have your daughter sectioned under the mental health act.

It was horrible. At the time I thought they they’d only done it because they didn’t know what else to do with her because her behaviours were so erratic, her thoughts were so irrational and she was just so hell bent on hurting herself, if not killing herself. And they’d warned us that they were thinking of taking this step, how did we feel about it? 

And, actually, because her dad is next of kin, well, I looked on it as it was his responsibility and if he agreed to it that was that was him and I wasn’t happy with him, you know, for, I I couldn’t see at the time that it was in her best interest. All that I knew was that if she was under section she’d be under constant supervision, even to the point of going to the bathroom. She wasn’t allowed in the bathroom on her own and for somebody who is such a private person, that was a real big issue and she got into all sorts of trouble with her body systems because of it. She wouldn’t drink because she didn’t want to go to the loo, you know. Her food, you know, she wouldn’t eat because she didn’t want to go to the loo. 

And it was as though people didn’t know her and they didn’t realise how that would affect her because they didn’t know her and I did. I couldn’t see at the time that it was there to try and keep her safe. 

I think she’s been sectioned three times and the worst of experience of it was I’ve actually seen her being pinned down by about six members of staff and, to this day, I don’t think she should have been sectioned at that time. I think her medication had a lot to do with her behaviours at that particular episode and she was put in the psychiatric intensive care unit and I don’t think you can even describe what one of those places is like unless you’ve been in one yourself. 

She was transferred to the other hospital under section and then the other hospital forgot to lift the section. At the end of the term they forgot to submit the paperwork so she was actually under section for about three months longer than what she should have been, which has obviously gone on her record, and it does have implications for the future. I mean for travel and things like that, you know. There’s things that you have to declare. 

Do you want to say a bit more about that?

I don’t know much about it.

Right. Okay.

It depends what country you’re going to but you do have to declare for some countries.

Whether you’ve been held under the mental health or you’ve got a history of psychiatric problems.

Right. 

So we weren’t impressed when we found out that they forgot to lift the section, forgotten to submit the paperwork. Never mind [laughs].

Although it might have helped her daughter, Ann was upset by family therapy.

So yeah, family therapy, I wouldn’t recommend it. Made me ask questions, where I hadn’t asked questions before. Made me doubt things I’d never doubted before…. and I’d, I would come away from there in tears, inconsolable sometimes. 

That doesn’t sound very therapeutic does it?

No, it wasn’t and again, you know, it’s… I don’t know, it’s aftercare. You’d go in for this quite heavy session, it’d only be an hour but rather it was an hour and it was only when, you’d talk, you know, they ask the questions and you give the answers and all this talk happens and actually, it’s not until you come away and hubby is there driving, as he does, and I’m the one that’s sat there thinking and quite often I’ll just end up in tears, “It’s my fault. It’s all my fault.” Nobody has ever actually told me any different [laughs]. So that’s the other side of it, once they’re adults, you don’t get told anything. So, yeah, so I just do what I can do now, probably over compensate.

What does your husband say about the family therapy?

He got picked on a bit really for not showing his emotions, whereas I would get cross and angry and challenge things and he would just sit there, “Yeah, well, whatever.” But they would accuse him of not showing his emotions and that’s harmful to everybody. That’s just the way he is. He’s so laid back, he’s horizontal. You know when he’s cross. You don’t want to see him when he’s cross. He doesn’t get like it often. 

But, yeah, I don’t think it was ever much fun for anybody really, for me or him. When the when the other kids were there it wasn’t so heavy but I think they were definitely looking at the family dynamics and how we all interacted with one another.

So all three kids were there when you had those sessions?

Yeah, yeah. But I know, in the past, when I’ve had counselling the common thing at the end of that is, “And how do you feel now? Are you going to go away from here and be okay? How are you going to get through the rest of the day and, you know, it’s fine.” But there was none of that there. You were just sent on your way. Off you go [laughs] until the next time. 
So but I think my daughter found it quite beneficial.

Ann’s daughter is now more self-aware and motivated, and is ‘a very different person’ from who she was.

So I think she’s more self-aware. She’s more motivated. We had this wrangle for many years that she wanted to go to university but she didn’t know what course and she’d been accepted at several universities but never been well enough to accept the place and, when she came back from when she was discharged from hospital, the support services that were put in, it was all around getting her into volunteering and engaging with that therapy and this therapy and it was all, “I’ll never be able to do any of that.” But, actually, now, you know, she volunteers somewhere three times a week and absolutely adores it. Gives her a sense of purpose to get up in the morning. She’s becoming more confident with other people and if she doesn’t want to go out somewhere socially, she will actually say now, “No, I don’t want to go.” Rather than go, be there, not enjoy it and then come home and hurt herself. 

So she is a very different person. And when she’s good, she’s hilarious and she’s kind and she’s just very lovely. My girl. 

Ann takes each day as it comes and is optimistic that her daughter will feel life is worth living.

What are your thoughts and feelings about the future?

That’s hard because I tend to take each day as it comes and… when I look back, it makes me appreciate what I’ve got now. Like I said, my daughter is a very different person to the woman that she was. Not still without difficulties and problems. 

I’m optimistic. I have to believe that it will all come out right in the end because if I don’t believe that, I can’t give her that sort of hope and, you know, people with mental health, they need a lot of positive reinforcement that, actually, life is worth living. There’s a big old wide world out there for you to go and live and see and do what you do. You know, you are here to make a difference and if I don’t believe that, then I can’t expect her to believe it either. 

There’s plenty days when I wake up and my first thought is, “Has anything happened overnight?” 

But it’s not so frequent as what it was. It would be every morning at one time but now it’s just when we tend to hit a blip and you just think, you know, or she doesn’t answer her phone or reply to a message or something, you know, you think, “Oh no.” And, in a way, when she has had a period of being well and good, then when you do get that phone call, “I need you.” Or, “Have you got a first aid kit?” Then your heart just sinks but very quickly you have to sort of gather your thoughts and say, “Come on, you know. This is a blip. Get on with it.”