OCD and anxiety disorders run strong in our family, like the non-magical un-sexy version of The Force. Not all of us have been afflicted in the same way, or with the same severity. To our (completely un-trained, un-expert) eyes, a lot seems to depend on circumstance. Physical illness or overwhelming stress can push the continuous background anxiety that we all seem to have – fear of setting a foot wrong, or failing to please others, for example – into something altogether more destructive.
Right now, I am having to watch my eight-year-old daughter, J, go through hell: health issues from four months of age, combined with the death of her father last year, have resulted in high levels of anxiety and extreme behaviour. Her hands bleed from constant washing – one of many OCD rituals; she thinks about death and worries about illness; she struggles to go asleep and stay asleep. There are plenty of other symptoms: severe enough, you’d have thought, for us to get some treatment quickly. And yet…
Professional support for my daughter through my husband’s illness and death has been virtually non-existent, and mental health services have proved to be ridiculously hard to access.
When I first approached the local health visitors, I was told to try sleep training. But I’d done this before (several times) and I knew it wasn’t the solution to J’s increasing levels of anxiety. I kept banging on doors and eventually got a referral to CAMHS (the Child and Adolescent Mental Health Services). My first contact with them was a phone call: the woman I spoke to suggested a book that might help (A Bag Full of Worries) and then recommended – yet again! – sleep training. The conversation lasted ten minutes, but she said she’d call back in a few weeks. She never did.
Over the next few months, my husband got sicker, and J got more and more distraught. She was often up for hours in the middle of the night. The pressure of trying to care for them both (and my son, last in line for attention) left me tearing my hair out. By this point, I’d been asking for help for around eight months. Eventually a sympathetic GP sent us to a child psychiatrist, who saw J once, then referred her to talk therapy; we went the private route because the wait on the overstretched NHS was just too long. Unfortunately the therapy didn’t achieve much – the counsellor tried, but she wasn’t an OCD specialist, and she just couldn’t get through the barriers J had put up. I got another referral to CAMHS, but this time I didn’t even get a phone call.
My husband died in May 2015. We were offered access to an in-house bereavement service, run by the hospice where he spent his last weeks. This consisted of monthly group meetings, plus less frequent, half-hour, 1-to-1 sessions. Better than nothing in theory: but J hated the group sessions. The person running them seemed hell-bent on making my little girl “face her pain”, without teaching much in the way of strategies to help her cope with it. Finally, after another trip to a new GP (in a different borough), we were referred again to CAMHS.
Maybe the third time is the charm – because we’ve now met a much more sympathetic doctor at our local CAMHS, who really seems to understand OCD and J’s underlying anxiety. Two months on, we’re still on the waiting list for CBT (Cognitive Behavioural Therapy). But after three years of trying to get help for J, I think we’re finally getting to the beginning of the end.
In the meantime, I’ve read a plethora of books on children’s behaviour and parenting. I stumbled on Calmer, Easier, Happier Parenting by Noel Janis Norton, who – as well as being a parenting coach – knows a lot about dealing with children who have extreme temperaments. The strategies she teaches have definitely helped to calm the household down, but there is still a lot of work to be done.
It’s been a difficult road to get to the point where J’s problems are being taken seriously; trying to get people to listen – to properly listen – is exhausting. Access to services seems so dependent on which particular health visitor, social worker, GP or consultant you talk to…or on where you live. And it turns out that there are many superb bereavement groups out there. But when my husband died, nobody told us about them. We had to go looking for that information ourselves.
Is there a better way? While the NHS is known to be stretched for resources when it comes to mental health, it wasn’t like we were ignored. In fact, we saw lots of different people. Too frequently, however, the person we saw dismissed the problem, offered only generic advice, didn’t have the specific expertise to help, or didn’t use techniques that were effective with J. Clearly, awareness of OCD and anxiety disorders in children needs to be seriously improved, and there should be more consideration of how to adapt techniques that work for adults to make them more suitable for treating children. I also wonder whether more support could be given to parents so they are enabled to help their children themselves? It’s unrealistic to think that parents can become CBT experts. But a couple of days of formal instruction in OCD and periodic access to an expert would have made a huge difference.
In the meantime, my family and I are doing what we can: caring for my daughter and each other, getting through each day, hoping things will get better with time.
About the author of this post: Katharine and Elizabeth Corr are sisters and best friends. They both studied history at university and went to work in London for a bit. Then they stopped working to raise families, because somehow they missed the memo explaining that children are far more demanding than clients or bosses. When they both decided to write novels – on account of fictional people being much easier to deal with than real ones – it was obvious they should do it together. Their debut YA fantasy novel, THE WITCH’S KISS, is out now from HarperCollins.