Clinicians, listen to the parents, please, please, please. Nobody has spoken to us enough. Were the ones that know about our children and were the ones that can help you to help our children so please talk to us more because sometimes our children won’t talk to you but we can tell you a lot more, especially about their background, about when they were younger, more needs to be found out about the person you’re treating through the parent, and it’s not.

Do you have any messages for other parents and carers and for clinicians?

Oh for clinicians, please talk to carers. Don’t exclude us. Were part of the solution. We may be part of the problem. I think often clinicians’ perception, certainly in my experience, can be that you’re part of the problem. Well, I maybe but actually, if you help me out I can maybe be part of the solution too and that the National Health Service has more and more that it’s being asked to do and to deal with and to support and not to use the people who really want to be used to help deal with this, to help support people who are going through it, seems like a really short-sighted and wasteful thing to be doing, so engage with carers. Find out what carers want. Wherever possible, if it’s if it’s helpful, and I know it isn’t always, but if it’s going to be helpful to get the the the patient to agree to let the carer know about what’s going on, do that, that made the biggest difference for me.

Was having [my daughter] give her, was having my daughter give her consent, that made the biggest difference because that meant that me and her CPN could talk about how she was and he, you know, he he never divulged anything huge but he would say, I would say things like, Oh shes been doing blah blah blah and I’ve been behaving x, y, z and it’s caused these kind of problems. And hed say things to me like, Yes, she did mention that shed been behaving like that and she did say, you know, and yes, I know that that, your response is really winding her up but, actually, that’s okay. You know and it was it was just being able to have that frankness. He never divulged anything hugely detailed and, if he wanted to share something specific with me that she told him, he would ask her and if she said, no, that was an end of it. But there were a couple of occasions where hed say to me, She said something, she said x to me and I asked her if I could share that with you and she said that was okay. And I found that really, really helpful.

Because, when you’re really worried, when you don’t understand and you’re really worried, you need that reassurance. You need to know that you’re doing the right thing or some gentle guidance if you’re not doing the right thing as to what the right thing is.

And what, have you messages to the clinicians and healthcare professionals?

Right.

That would be from a parent, from a carer point of view, include us, even though our children might be adults. Listen to us because we are there twenty four hours and okay, we might be over protective, nuisance parents but we do carry pearls of wisdom that you can find. And just because we are not doctors and we don’t have medical degrees, we should be dismissed because a lot of us are highly educated, observant people.

So yes, include us.

And I appreciate that clinicians have the patient’s best interests at heart so when they say things to someone who self-harms like, you know, Make sure you do it carefully, you don’t cut too deep and make sure you only use clean blades. Please be aware of the fact that the carer might find that a really offensive thing for you to say and that that’s okay. I think that’s okay. I think that’s okay as a carer to go, I find that really offensive. And I think clinicians need to try and have a conversation that says, I really understand how offensive you find this. The reason we do it is. And we had a little bit of that but I think more of it would have helped. When she, particularly when they’re in their teens and I think, you know, as a responsible carer, parent, you’re very aware of how vulnerable they are. You need that reassurance and it felt like as a carer, it felt like there was a responsible clinician here advising my daughter on how best to slice her arms up. That’s how it felt from a parent’s perspective and that’s why I think you get, if you get a negative response, that’s why because, as a parent, your perspective is completely different.

And clinicians I think have a responsibility to help parents and carers see that they need to have a different perspective to help and it’s quite an alien one.

I found it, certainly I found it a very alien one. So in terms of clinicians, you know, please just think about think about how you can engage with carers and offer them a bit of support and a bit of support that’s related to what you’re doing with the individual.

Any messages you’d like to give to clinicians or doctors that are dealing with self-harm?

I think it would be good, I don’t suppose it’ll ever happen, if they could find out who the main carer is for that person and provide some sort of support. I know, when I looked after my mother-in-law, there was a scheme that if you were caring for someone, they marked your notes, as an individual, that you were a carer.

Oh, right. Yes.

Now I don’t know what’s happened to that scheme, whether it’s still there. I think it would just be nice maybe but I know doctors haven’t got time have they.

So when the notes were marked, then they could be extra careful to sort of ask how you were doing and

Yeah.

Things?

If you come in for a routine thing or if you come in for like stomach problems, for instance, maybe that would be an indication that you’re under a lot of stress and making a lot of acid and giving yourself this, that and the other [laughs].

So do that for people looking after self-harmers?

I think so, yeah.

I don’t think enough professionals understand what, where self-harm is coming from and what it’s a response to and I’m absolutely convinced if they did, you know, they would be they would be responding a lot better and I just think, you know, that some that, it’s just such a shame that somebody, you know, goes to somebody in pain and they’re being treated as if they’re not, you know. They’re being treated as if they’re just attention seeking and I think that’s, it’s just belittling. It’s just, you know, and it and given that these are people who feel bad about themselves anyway, I think what they need to be doing is the same as, you know, I’m trying to do, take them seriously, listen to them, take them seriously, do what you can and help them do whatever they can and just be a bit more compassionate I think.

Yes.

But understanding is what it comes down to, doesn’t it.

Yes.

And I think, you know, to be fair, a lot of professionals, and you can understand people in a hospital, they’re rushed off their feet. They’re seeing people coming with all sorts of not self-inflicted injuries and somebody comes in who’s done themselves harm and they think, oh, you know, just attention seeking. But I think if they understood better, they would respond better.

Yes.

And I think if everybody was responding better to somebody in that situation, that’s people close to them and the professionals as well, then I think just being taken seriously and and feeling as if you are understood, I think is the big thing and I think that’s for everybody.

Not everybody fits in a box. So try and let the person know that you’re not going to label them and put them in a box, that you’re actually going to hear what they’re saying and tell them, you know, reassure the person that you’re looking at them as a person. They might have anorexia. They might have bipolar. They might be an addict but they are a person with this problem. They are not that problem.

Yes.

And I think clinicians often, because they need a label, they need a box, so that they can treat it. They can give it this drug. They can do this treatment. Find it very hard to look at the person and not instantly categorise.

Yes.

So try not to do that because they will find more people will talk and be open if they know they’re coming, This is me. I’ve got these problems.

Just staying with the idea of messages, is there any message or advice that you could give to providers of health and social services or educational services about the ways they respond to young people who self-harm?

I think, from observations and from my experience of how some professional providers deal with people who self-harm, I think sometimes it can be a bit flippant in their approach or, you know, probably insensitive sometimes, the way they say things because what they need to recognise is that people who self-harm, they’re needy, they need a lot of reassurances and they’re also very sensitive. So it’s about being sensitive in terms of how you say things. Not making them out to be victims, but treat them like a human being, that they’re, you know, they’re valid, they’re important and that they’re unique. And you know, just tapping in, tapping into their unique qualities and that.

I think theres lots of ways that healthcare professionals can, can help families. Is that what you mean, families? I think leaflets with some of the facts. No, I think leaflets with some advice for parents, which would include some facts, but also some hints and suggestions ; to get the feedback from parents like me to be able to put into a leaflet so that you’re speaking the same language to another parent, rather than it coming just from, from a rather clinical aspect.

I think there needs to be help directories and resources, web resources, organisations that, that would help parents on there. I, I was never given any address of any organisation when I first came across self-harm and that would have been really useful and I’d like to have seen that at CAMHS as well. It’s also important to me that hospital staff, and I realise the dilemma having done some research now, that hospital staff feel torn because they’ll often see the same person back repeatedly self-harming and it’s hard. I’ve now had some counselling training so I know what it’s like to help and counsel someone who doesn’t seem to be moving forward. So I really see it from their point of view but they, a lot of people I think are switched off and negative about those who self-harm and I think that attitude must change.

Is there any message that you might want to give to health, social care, emergency services, about the ways they respond and help or don’t help?

Yes, I think theres work to be done there. I think, if we go back to school, because this is going to be fairly prevalent, it’s a fact so theres no point in trying to think that regardless of where you are, a leafy-laned school, sink school, whatever you’d like to call it, theres a likelihood because we know it’s a fact now that theres going to be a number of teenagers self-harming. That is going to happen and these are going to be young people, troubled young people coming in to school with that problem.

I don’t think schools are that that well equipped. I think we were fortunate that we had we had this unit where my son could go and talk to people and they helped him to a degree but they can sign post as well or they can come to me and say, We need some external help for this. So I think something needs to be done there in terms of awareness and is that the right place and is that the right place because have they got the skills to intervene and actually handle that? I’m not sure about that. So it’s about knowing then where to refer and what to do again, without the overreaction.

I don’t think I said this but my son was actually isolated from school in the end because they couldn’t cope and they felt he was influencing other young people because there was a bit of a a bit of a glut if you like of other young people and I thought that was really unfortunate. I know my son viewed that very, very negatively, the fact that he couldn’t go to school and access what everyone else was accessing. So that’s again something that I think needs to be thought through because isolation is the wrong thing and judging and assuming is a wrong thing. To me it’s not the right way of dealing with it. It does need, I think it does need a degree of specialist support.

What I would say, back to the health professionals, is there any work that you can do with schools? Don’t, it seems to be a taboo subject still. I can’t believe how common it is, although it’s not common if you understand what I mean, but no work is being done. We go into schools and we talk about drugs and we talk about teenage pregnancies and we talk about alcohol but, actually, nobody is talking about mental health issues with young people. Nobody is going into those schools and doing seminars but these are real issues for these young people that, actually, you know, it’s not just about self-harming and cutting, theres eating disorders. Theres all of that. Where is that in the curriculum? Where is that in terms of that whole personal, whatever it’s called, PSHE thing that they’re doing. They don’t. It’s just not talked about and I can’t believe that were in two thousand, coming up to two thousand and thirteen and were still not talking about it and that’s what I would say to the professionals out there, to the education authorities, to health authorities, please see it for real issues and do some work with these young people in these schools as part of that whole thing about drug abuse and everything like that, about where you get the help, that this is a real issue and coping strategies and the dangers of it. As opposed to just doing it about drugs. So that’s one thing I’d like to see happen.

Shes had a series of these, assemblies, in sixth form, on all kinds of issues like, you know, organ donor-ship and, all, you know, all, and they’ve been brilliant. Shes been quite inspired by all of them, and about some of these sorts of issues, but should we be doing that when they’re fourteen? Because that seems to me to be the crucial time, doesn’t it?

Yes.

Part of that citizenship bit, that they do, you know, I can’t remember what subject they call it now, don’t they, but don’t they have two or three lessons a week. And, it’s about preparation for working life, and sex education, and that sort of thing, but, you know, if it was possible to put together at a unit of half a dozen lessons, that just prepares, some of these children, because, and I know it’s mostly girls, but girls and boys about how, just to spot the warnings signs.

This is where I’m heading, and I need to stop it now, and some coping strategies, and that sort of thing.

Yeah.

Just to stop it happening, because it doesn’t have to, but anyway weve got this, in society, this cliché of the grunting teenager, and, you know, we got sucked into that, so, Oh this is just the grunting teenagers’ phase. And it wasn’t, and, we should have done something about it, and, you know, how many of those grunting teenagers are really, really hurting. So, you know, maybe that’s, that’s something practical that, you know.

Yes.

All schools should be just running a, a short unit of work in there, alongside sex education, and stuff but, just that helps.