The start of the journey

When I thought about writing this blog. I wasn't sure what I wanted it to be. Did I want to record experiences, things that helped or sources of good supportive information. I think the reality is I wanted a place to get it out of my system. 

I wanted to write down our journey as we travel with our son on the road to recovery from OCD. 

It is a journey like none I've ever been on. There are so many false starts, dashed hopes, broken dreams. So many times I've cried myself to sleep, woken up crying, just found myself driving or at work crying. It's an exhausting, overwhelming journey and yet we carry on because there is no other option.

I desperately want my son to recover as does he. I just have no idea how we are going to make that happen.

I started writing this blog initially after we had our last appointment with Adult Mental Health Services. My son has recently transitioned from CAMHS, an experience best forgotten. I had so many hopes moving into the adult service, the medication would be different or better or he could access things he could not as a child, they would have more specialist services, there would be additional people to help and support him.

I am actually aghast at my naivety as I'm writing this down. His initial meeting with his new psychiatrist was just a hello how are you I'm your new Dr. I knew there wouldn't be a plan so far. There would be a referral to psychology, one to occupational therapy and we'll see you again in 3 months with a plan around medication.

Three months? That seems like a long time... but let's roll with it. In the following 3 months, the world fell apart. It started with a psychology appointment, he went for an assessment to see what they could do to help. At the end of the appointment they told him he didn't fit the criteria for support but they could refer him to primary care psychological therapy which would be an 18-24 month wait. He didn't see the point and I don't disagree.

In the days that followed my son could not cope with the constancy of the intrusive thoughts running round and round in his head. These are no ordinary thoughts mind, these are insidious, repetitive ugly thoughts that make you question your experience of reality. 

The thoughts he experiences range from those that suggest he will or has violently hurt others, to loss of his self identity, to all his friends turning against him to thoughts that he will shout out inappropriate sexual or racial slurs. He questions himself constantly, he seeks reassurance constantly, he compulses constantly to try and bring a minute or even a few seconds or relief. 

By the weekend he said he felt better, he was less vocal in his tics and compulsions and went to meet some friends. During that evening, he took a downward turn again and in a moment of impulsivity he took himself away from his friends, bought a packet of paracetamol and took the majority of them. The relief was immediate, just before the reality kicked in. He was fortunate to be with friends who love him and one called an ambulance.

The first we knew was when he called us to say he was in hospital but did not know which one. My heart skipped a beat. How had a night out with friends turned into a suicide attempt?

The hospital he was taken to was not local, we had to drive 40 miles to get there. Due to Covid restrictions we couldn't even be with him initially. Eventually he was discharged, they couldn't keep him in, he couldn't speak to a mental health nurse as he was out of area. Call your GP on Monday was the helpful advice.

You would think I'd be shocked 'thats it?' but I'm not. This isn't the first time he's tried to commit suicide because of OCD and it probably won't be the last. How did suicide become a common feature of our everyday life? How did it get this far?

The total and complete lack of expert support and help is how. 

Our GP was helpful and sympathetic but their mental health practitioners are not meant to see patients who have psychiatrists. Ten days after his suicide attempt we saw his psychiatrist. Ten days. I insisted on being there, 18 may be considered an adult but when you have a lot going on in your brain, it's difficult to listen. 

The first thing he was given was a piece of paper with the number for the Samaritans on it..... This is the state of NHS mental health provision at the present time. Call someone else... 

As the conversation went on, it was abundantly clear the psychiatrist hadn't read any of my sons notes. Offering him increases to medication that had previously exacerbated suicidal ideation and caused two previous attempts within the space of three days. Asking him what medication he's previously taken. Why would a really poorly 18 year old boy have any idea the names of previous medications he took as a child. Its hard enough for me to remember. That's what the notes are for surely.

We left the most pointless appointment in the history of all appointments with a referral to the Day Hospital - without any clear indication of what went on there, what they could offer or why he was going, no change to his medication - we'll give that another 3 months to do absolutely nothing, a piece of paper with a couple of numbers on it including 999 and a 2 year wait for counselling. That is our plan.

I have never been more upset or angry on behalf of my son in my while life. We would have to take this in hand ourselves.