No one was helping us to look ahead. No one was helping us with strategies. I had to do some reading, you know, for myself and to begin with, I must admit, I didn’t. I looked to my GP and NHS Direct, you know, who I rang when things got really difficult with wounds and learning wound care. I’d been a teacher so I suppose I knew a fair bit about first aid but, you know, not, not huge amounts.

I personally think the, the information that I, I got for myself was really important. I, I believe that if you understand why somebody is doing what they’re doing it just gives you much more insight and it helps you to, it helps to give it some rationale, you know, apart from anything else. It also can help you feel not so alone because you might get, you know, narratives of other people. You know, so that you realise and you can pick up some hints and tips from them and just learning about it either from, you know, the website or from books was something I did. I have to say that nobody suggested that I did that and I think that would have been useful. I think, having, you know, downloads about anger management was completely off the mark and was a bit hurtful really.

I don’t think, and I’m sure my doctors wouldn’t mind my saying, I don’t think they really have much experience about self-harming and couldn’t offer anything. They couldn’t really support me with the issue. They supported me well on other, you know, other things and with me personally and with the panic attacks and all the other things but they didn’t really link it to, to why I was feeling like that. They just dealt with that but they didn’t link it and they didn’t give me any suggestions as to how I could improve things for my daughter, which of course, in turn, would have improved things for my health. Yeah, so I just, I researched if you like, and looked, you know, for myself.

Were there particular websites or particular books that you remember being helpful?

I looked at Mind. I found the Mind website very useful and books, I got a lot of books, actually. There wasn’t anything for parents, at the time, so I, I had to find things that clinicians had written, which some of it was a bit hard to stomach because it’s a bit impersonal and, obviously, self-harm and suicide comes kind of often lumped together and so that, that’s yeah, that’s a hard read for a parent, especially if people haven’t experienced it for themselves. They, they’re talking about cases and case studies and they’ve got a lot of, a wealth, obviously, of medical experience and knowledge and that’s very useful but the human side of it I think needs, needs to be told as well and understood.

I also found sites like Red Cross and St John’s Ambulance very, very helpful, for just checking up on the first aid side of things. I think that’s really important. I think you can’t, as a parent, just let a child tend to their own wounds and not be at all interested in that.

I think it’s, the important thing is finding reliable researched information. It’s very easy to, to look for anything and get onto a website that’s got a forum, that is just people chit-chatting and spreading their opinions. It’s much more difficult to find somewhere that has got researched knowledge and background, as well as people talking and talking about their experiences and, and what they found helpful because it is helpful to, especially with things like medication, to discuss with other people. I’ve had this. It’s not listed in the side-effects, has anyone else noticed this? Should I go and see the doctor? But it’s got to be people that, it’s more helpful if it’s people that have experience and, certainly, if it’s, if it’s administered and, and watched over by people with expertise and that have done research in those areas. It’s not just an opinion or hearsay.

Are there particular sites that you can kind of name that you’ve found helpful?

Off the top of my head, BEAT is one that’s quite often recommended for people with eating disorders. I get e-mails regularly, a newsletter from Psych Central, which I’ve found quite beneficial because it’s, it’s literally a, a weekly e-mail with different bits and bobs on it and you can dip in and out of it as you please. But then you’ve, it’s down to you to then follow-up from what they’ve linked, where it’s come from and who’s put it there in the first place. That’s a couple that I use and the one that were working on with this.

Obviously, that’s why I’m doing it because I think it would be very beneficial. I think it would be very good, especially in slightly more unusual circumstances where, for example, a parent has self-harmed and then a child self-harmed and, you know, theres, theres going to be people out there like that and theres going to be people out there that think they’re the only ones. And even if that’s just a small comfort for someone to know that they’re not the only ones. This has happened before and theres light at the end of the tunnel, it’s, it’s not them. It’s not their fault. This is the way things are nowadays and I think that could be very helpful and you can, you can talk to, to people and share experiences and, and ideas on how to handle things. Even if it’s just getting things off your chest or, you know, we had a really bad day to day, such and such happened and oh, you know, if you need to talk you can send me a message or if you need to talk to an expert, ask a doctor or look up, is this a side effect from something or is it a sign of something? Where do you go for help? And to have lots of links from there of where to go, who to talk to, where to get help in one place, would be very beneficial.

Initially, I just I just Googled “self-harm” and just dotted through the websites and I looked on the YoungMinds. I can’t even remember the names of all the ones I looked at now and I am aware that when you do go on the internet, you get, you can get unreliable information so you have to take things with a bit of a pinch of salt. I looked on the NHS website and I think I found one called, Wheres Your Head At, which is a local authority kind of, that that was pretty good and I like I like the way it has things for teenagers and for parents as well, very much like the YoungMinds, because you are in this together and it’s good to have advice for both. But yeah, it was just generally looking for I Googled self-harm, treatment for self-harm, self-harm symptoms and self-harm causes, all sorts really and just spent, I was just looking at different types of information.

And was that a one-off single occasion information splurge or did you go back to it.

Oh I went back to it.

Time and again?

Yes, yeah, I sort of, I think probably the first day I spent a good couple of hours and then, you know, occasionally, I’ll pick up my iPad my notepad and just have another look and see what’s happening.

And do you still do that?

I’m doing it less and less. I think that the further we get down to her getting treatment yeah, I feel like I’m kind of got to a point where I’ve got enough information and a lot more information, I don’t know if it would help me at the moment.

I still would say, have a look, see what’s there, see what other people are saying, experiencing, what’s helping them, is it changing, is it, you know, particular circumstances that are causing it. Just have a look and see what other people are saying, what other experiences people are having and I think the sort of step-by-step advice about what are often quite common sense things because, at the end of the day, it isn’t the, the answer lies with the young person really and I think that’s it and the family. For the young person, they are making choices and they’re going to make a lot of wrong ones and we can talk to them until were blue in the face and, believe me, we do and some days you think you’re in an, you know, you know, an alternative universe somewhere because, you know, you’re constantly, constantly, constantly on this track of, You know if you do that, that might happen. You know if you do that, that might happen. So think about it, [name] and try not to do it again. Yeah, okay. Happens again the next day [laughs] and it just goes on and on and on.

So in the end, all you can do is, you know, there is good advice and sometimes what that, the thing about going onto the websites is you’re so embroiled in it emotionally, you’re tired and you’re anxious and you have all the other things going on, sometimes to see some detached common sense advice actually does help to clarify certain things in your mind and, Oh yes, I know that makes sense. And it helps you to reinforce things but, at the end of the day, you’ve only got your own resolve and how you can do your best to try to deal with things on an informed basis and I think that helps you to do it on an informed basis.

Yeah, I still did try and look for some other stuff because I thought, oh well, you know, it’s been a few years. Perhaps theres other thinking and stuff behind it so, you know, I did go online and have a look and try to look for like sort of like forums for parents of people who, cos it’s one thing being aware of it and knowing why people do it and that and it’s another thing when your own daughter is doing it [laughs]. But I couldn’t seem to find anything. I don’t know if I was looking in the wrong places but I certainly couldn’t seem to find anything so I just found a couple of like reports and stuff like that into, you know, self-harming and what the current, you know, what the current thinking is, the reasons why and, you know, about treatments and stuff like that for it. So I sort of looked at it from that standpoint. You know, and, and again that’s typical of me. I didn’t look at it for, you know, the emotional support bit. I was looking at it, well what does the current research say [laughs]. So yeah, I did look for, look for some stuff.

So you were you were looking for information, not emotional support?

Yeah, yeah. Yeah, I did, I did try and look for, I wasn’t, when I was looking for forums or, you know, some sort of char thing, it wasn’t necessarily for emotional support. It was just to sort of try and find out what other people, what other girls of her age were doing and how other people find found out and what other people what other parents did, rather than anyone, you know, because I don’t, I’m not really one for looking for emotional support. That’s just another one of my things [laughs].

Did you find anything on like on the internet, or books, at all helpful or?

Bizarrely, my daughter has, has spent hours, I think, over the last year, trawling through all kinds of things. I haven’t, and I don’t know whether that’s a generation thing. I use the computer all the time, and I’m something of a book addict, and all the rest of it.

I don’t know why I haven’t, and, you know, one of the first questions you asked me was whether I’d looked at your website before I came, [laughs] and, and you asked me that and I thought, You stupid woman, why haven’t you? And I should have done. I think, it it’s about this stupid place that you find yourself in. It’s really, really hard, to accept, that, and it’s not about not being able to accept that anybody else can help, part of me, is frightened by what I’m going to see on it, because, I actually think I’ve seen enough in my own house. I don’t need to see, I don’t know, I don’t need to see it, I don’t I don’t want to see, all of this stuff out there, because it hurts too much. So, I think, I kind of deliberately haven’t been looking.

And, I think, I felt, that the people around me should be giving me the help I need, and, I actually feel massively betrayed by the whole CAMHS experience. Because I, I don’t ask for help easily, at all, and, when somebody is sitting in front of you asking them for, for help, and you don’t give it, it’s a huge kick, huge kick, and. So, that, you kind of find yourself sitting in this black hole, and it’s quite difficult to look for help. And, so I think, I think that’s probably why I haven’t, and then you get these sort of little snippets of things, so, you know, husband accidently comes across somebody who turns a light bulb on, and you think, oh thank goodness for that.

So what sort of support and information would you have liked, and?

I don’t know, because I don’t know how I would have accessed it.

Yes.

This is the stupid, this is, it is the stupid thing about the whole thing. Because, it sounds wonderful, the website, and everything, the HealthTalkOnline and all the rest of it. But I don’t know whether I would ever have looked at it. I think if, I think if this lady in school, had said to me, Have a look on this website. Or had said to me, Look on this website. I would have done. I think, when you find yourself, drifting is too soft a word, lost somehow, in this sort of way, you need somebody to tell you what to do. So, and this is where you kind of need somebody to spot the signs, and say, Look at this. This is where you should be looking. This is what you should be doing next. And then all right, I’ll sit for an hour or two and I’ll work it out for myself, because that’s the way I do things.

In all honesty, with this one, I’ve I have at times looked up mental health issues but I think theres so many confusing issues with regard to my daughter because shes got the learning difficulties, you know, the social issues already, I think, you know, trying to assess whether she has some other mental health issue or not is something, that’s something slightly beyond me at the moment. That since this latest incident I’ve had flu, you know, and a couple of weeks more than that, you know, flu, Christmas, New Year, things have been slightly busy, you know. If we weren’t seeing a psychiatrist until the end of March, yes, I would start looking at things and start thinking, I want to start finding out but because I know the first psychiatrist appointment is at the end of January so only a couple of weeks away, it then gives me think, look, I know the next couple of weeks in my life are really busy, I’m actually just going to say, okay. We well see what they say.

Well see what their response is. If it’s a non-starter, yes, then I’ll start looking at things but, hopefully, they’ll say, Well, we can’t say at the moment. I need to see her for, you know, further appointments. Or whatever I’m sort of reasonably happy at the moment to leave it in their hands to see where we progress to, rather than start trying to go off, look things up on the internet because there is so much out there that is a complete pile of rubbish that I’d rather say, right, okay. Well leave it, leave it to the experts for the time being. If I feel like they are not making progress, yes, I will go and start making my own investigations and what have you but well leave it until then.

I think that I was completely at my wits’ end when I came here to Penumbra. Absolutely in the wilderness in terms of information or, you know, how I felt myself and about how disturbing the whole thing was. And I think that speaking to [name of counsellor] who was able to make me feel a lot better about all of it. And she gave me, she gave me information to take away and read myself and, and pointed me in the right direction in terms of websites and everything, but it was really helpful information. That was a turning point for me, because I had never heard of [mental health charity]. And so now theres a parents’ support group here. So that’s a really, and, and to hear another parent’s perspective is really very helpful indeed, when they describe things that you might have felt yourself but not thought were a legitimate way to, to feel. So very helpful. So this is a really good organisation for parents.

Being given information is one thing, but then doing something with that information is another. So I’m just kind of interested in that bit in the middle there. You took that information away from here and you managed to do something with that information inside yourself to give you a different approach and a different attitude. Can you say anything about that?

It opened my eyes to how widespread this is. I didn’t know so many people did it, I didn’t know so many various types of people did it, and different ages, and indeed that, what physi-, physiologically what happens. It all makes a lot more sense to me now. To actually see that written down and, and to process that and not just to wring your hands and say, you know, My child is completely lost. You know, there is research and help and people who understand about it. That they are there. I had barely heard of self-harm, barely heard about it. And if anyone had asked me, I probably would have thought that it was attention seeking, you know, that it was like, it was rebelling behaviour. So my understanding of it has increased.v

And is there any support that you would like that you haven’t had?

I think information. I think I think information and a greater degree of confidence in in the medical services because I think that I should have gone through my GP. I think that should be the way that you get help with things like this and I think I should have been able to feel that they would know enough about it to be helpful.

Yes.

And I didn’t feel that. I felt quite cynical about it and I don’t know whether that was justified or not but I suspect it was and I just thought I thought it was better to go to somebody who I did know, had experience with, which is how we ended up with a, you know, a child psychologist.

But it, no, it would be, it would have been great, still would be great because were not out of it, you know, were in a better place at the moment but I’m sure it hasn’t left altogether. I think it would be fantastic to have more accessible resources, which might give practical guidance, you know, about what does help.

And whether, you know, what happens if you do go to your GP, what will happen, you know. Who will they be referred to and how will you be treated as a family? You know, what are the implications for the other children?

Yeah, that’s right and I wouldn’t say it’s anything that I’ve read from any manual or any book or leaflet. It just intuition, common sense approach, you know, combined with professionalism, you know, all rolled into one has enabled me and empowered me as a parent, as a mother, you know, to cope with all the stress and dilemmas and impulsiveness of my daughter and her self-harming behaviour over the years. And had it not been for that, I think I would have been on tranquilisers by now or needing therapy myself, you know, but I’m a very hands on person. I’m very dogmatic, very practical and I just do whatever it takes to get her through the day. If it means transporting her to college, you know, driving her like a taxi service, you know, if it makes her happy, I’m happy. It’s less stress for me, you know. If shes happy, if shes getting through the day and that and shes not getting any absenteeism, at least something is working.