Service Detail

Naomi’s story (Trevor’s mother)

“Trevor was diagnosed with OCD at ten years old”

Prior to that I thought he always had some obsessive compulsive tendencies. From an early age, things had to be in their right place before he was comfortable in a room. To us, though, that was just who he was. We were a little worried at times, but members of our immediate family would say he was absolutely fine, so you feel torn between doing the best for your child and not wanting to make a mountain out of a molehill.

When the condition worsened, we realised something definitely wasn’t right. It was a combination of outside factors that seemed to affect him. He was leaving primary school, so six months before the diagnosis we were looking at secondary schools. And there were tests at school too, which was extra pressure.

“We did some research and decided to see the GP”

The GP referred us to the local CAMHS, where Trevor had a course of cognitive behavioural therapy (CBT). All in all, the therapy had a really positive outcome. It improved his mindset, I’d say. He was much more positive about himself, his confidence was better and he was able to do more on his own and reassure himself about things.

When he finished the sessions, his therapist told us that if he relapsed it would happen sooner rather than later, but it was the other way around for Trevor. He was okay for a good 18 months and then there was a gradual re-emergence. You feel like kicking yourself because it took us a while to notice it was happening.

“OCD can feel like a dark shadow hanging over the family”

It’s only one person going through the OCD directly, but it can affect the whole family. In the early days we accepted his rituals, thinking that was just who he was, but now we knew he could be different. Also, he was older this time around and his behaviours seemed a little darker. There were teenage things mixed in, I guess, which meant a lot more anger and upset.

Sessions would be triggered by being stressed, upset or angry – although OCD was clearly stressful for him, it was one of the ways he dealt with things. We knew we should nip it in the bud as soon as possible, but, as soon as you stop one thing, something else comes along five minutes later. It’s really hard to describe what that’s like. You want to say ‘snap out of it’, even though you know that’s ridiculous. It’s heart-breaking because you can see what’s happening to your child and you feel powerless to help.

“We were asked to be part of a research study at the Michael Rutter Centre. We jumped at the chance”

The school referred us to our local CAMHS again and we were asked if we wanted to be part of a research study for the Michael Rutter Centre at the Maudsley Hospital. We were keen because CBT had already worked well, and the fact that the study would help the centre improve their service also struck a chord. We said yes, let’s go for it.

The programme was similar to the one at our local CAMHS, but they have a different view on what’s achievable… because they believe people can be cured of OCD.

Another big difference, for me, is that family members get the chance to speak to the therapist on a one-to-one basis. I really don’t want to say anything derogatory about the local CAMHS service, because they were really good, but I never had the chance to ask questions, and that meant I couldn’t always follow Trevor’s sessions as I would have liked.

“Trevor grew in self-confidence and his outlook improved”

The therapy at the Michael Rutter Centre is very personal to each young person. Trevor’s therapist took a lot of trouble to get to know him so she could find the right things to say to get him to do what he needed to do. At times she needed to be tough, and she was. He had sessions on Friday after school and he was sometimes tired. Actually, we were all tired, but she’d say ‘come on…’ and then start an activity that kept us all focused. She was prepared to do new things, like go outside or bring objects into a session.

I’d say his improvement was more gradual this time. The need to do the rituals lessened, he grew in self-confidence and his day-to-day outlook improved. With less reliance on rituals, he had more time to do the things he wanted to do.

“You’re not alone with what you’re going through”

At times, I’ve tried to explain things to friends and you sometimes see their faces drop. I guess OCD might seem crazy to people, but at the Michael Rutter Centre you can be completely open and honest and the people there won’t bat an eyelid. Things that seem strange to you, they’ve seen it all before.

Trevor’s last weekly session was about three-and-a-half months ago now and he’s doing regular follow-up sessions at the moment, which are part of the centre’s relapse prevention programme. I wouldn’t say we’re 100 per cent clear yet, but he’s doing well and he knows they are there for him if he needs them.

The help we’ve had from CAMHS and the Michael Rutter Centre has been invaluable – for Trevor and for us as a family, especially when times seemed dark. You’re looking for a way to get through it and there’s someone there for you. There are people who can help, and they really do help. That’s so reassuring.

 

Trevor's story

Trevor’s story (Naomi’s son)

“The first thing, I think, was arranging objects in certain orders”

My OCD probably started in a minor way around the age of seven, but then the rituals grew. I think the first thing was arranging objects in certain orders. There was a bookshelf that I’d have to arrange and I banged things quite a lot – like, tapping the bedside table and the sideboard a certain amount of times.

We thought it was just a phase at first, but obviously it wasn’t. Then, when things got worse, the arranging dropped away and other things appeared. I jumped over thresholds, ran up and down the stairs, touched some things and not others, and generally spent a longer amount of time on the behaviours.

A couple of years later, it got so bad that my mum did some research into OCD and we were put in touch with Child and Adolescent Mental Health Services (CAMHS).

“At one point, I was extremely stressed out. I literally couldn’t take any more”

The OCD was getting in the way of day-to-day stuff – like, getting ready for school in the morning took a long time. It wasn’t that bad while I was at school, but I didn’t really do it there because it wasn’t in my comfort zone.

Once we’d spoken to CAMHS, I started cognitive behavioural therapy (CBT) and that was really, really helpful. I had weekly sessions, where we’d talk, choose a ritual and assign a task to it. The idea was to confront the ritual and think of ways to tackle it when I had the urge. I used to get a particular feeling before doing a ritual, so we’d talk about deep breathing, things I could say to myself and think about.

I wouldn’t go so far as to say it was a relief when I didn’t do the rituals, to be honest. Sometimes it was harder not doing the ritual, and then the urge would come back stronger than before.

“I didn’t really like CBT at first, but that changed when I could see it was helping”

About halfway through my time with CAMHS, we confronted one of my big rituals and I suddenly realised I wasn’t doing it anymore. That was a turning point because I could see the therapy working.

After the programme, things were a lot better for a couple of years, but then it got much worse again. It built up slowly and things just weren’t working out. The same rituals were reappearing and there were others too. I’d stare at things, bang things harder so they broke… there was counting, asking for reassurance a lot, washing my hands, stamping, hitting one object against another, closing my eyes a lot. It had been a stressful couple of years, so I don’t think that helped. I’m in year nine at school now but that period was roughly when I came into year eight, so I was 13 years old.

“My therapist at the Michael Rutter Centre says I can be cured of OCD and now I’m proving that to myself”

The therapy at the Michael Rutter Centre is quite similar to what I did through CAMHS. Though – and this is hard to explain – where CAMHS said I couldn’t be completely cured of OCD, my therapist at the centre completely disagrees.

From the start, we tackled one ritual a week. I had a book to write the rituals in and she would ask me to give them an anxiety rating of 1 to 10, to express what it was like to have the ritual and how anxious I was about not doing it. It was hard to rate how I felt sometimes, but I managed – I think the highest was an 8 and the lowest was a 2. It helped, because rating my anxieties told me how I felt about each ritual and how I’d find a way to get over them.

When my therapist first said I could live without OCD, it was a shock, but now I feel I’m proving it to myself. A couple of sessions in, I could see things were changing again and I realised I was already getting better.

“Doing rituals is rare now”

I had 14 CBT sessions at the Michael Rutter Centre and now have regular sessions, which are like a catch-up, and assessments to see if my OCD score has come down. Day-to-day, things are really good. OCD used to ruin my day, but it’s rare I do a ritual now. I can watch TV in my bedroom without smashing the controller, I can play my PS3, I can talk to people more easily, and it’s much easier to focus.

I hope everything’s cool and relaxed by next term because I’m starting at a new school, where I’ll be studying theatre. I’m really excited about it.

I’d really encourage young people with OCD to try out the treatment at the Michael Rutter Centre. I was quite reluctant at first, but I can guarantee that everyone will find something that’ll help them. I’d say the treatment works for most people. Day-to-day, it’s made such a difference for me.