The past five months have been a living hell for our family. Or perhaps limbo is a better term.
Since September 4th last year, my 15-year-old son has been detained against his will in a PICU, a Psychiatric Intensive Care Unit, a four-hour round trip from his home. PICUs are designed to be like an A&E Department - patients swiftly brought in, treated, and moved on - either home or to more appropriate in-patient care. That's the theory. What they are not designed for is for long-term detainment, and certainly not for nearing half a year, without appropriate assessment, treatment or care.
Sign the Make Room for Matthew petition here
Don't get me wrong, Matthew is very ill. He has autism, ADHD, generalised anxiety and autistic catatonia, and suspected, as-yet-unassessed mental health issues which made it unsafe for him to be with his family. We are desperate for him to be assessed and hopefully treated. An autism-specialist unit has been identified, and his referral accepted. Happy days. Except that was also back in September last year. This whole, hideous time, he has been waiting for a bed to become free in that unit. And as the weeks became months, and we asked more questions, it seems that there are five young people ready to move on from that unit - most have indeed been ready since September - but there is nowhere for them to move on to.
So my son, those five other young adults, and, it is becoming increasingly clear, hundreds of other children, are all stuck in limbo. Receiving no help. Nowhere near home. With nowhere to go. And seemingly no hope. While our focus is naturally on our son, the problem is clearly systemic and untenable.
Every day that Matthew stays in the PICU is damaging him: his autism and anxiety mean that uncertainly and a lack of routine are incredibly distressing to him, but we are unable to offer him any certainty. His lack of social skills and emotional regulation means he often gets into scrapes with his peers on the unit. The staff are well-meaning, but simply don't understand autism, so they don't know how to help him. As a result, he is becoming increasingly withdrawn and isolated - he's stopped attending education, has no meaningful activity or appropriate peer interaction. His self-help and cognitive skills have regressed, he's put on masses of weight, he wont get out of bed in the mornings, and he is literally pulling his hair out with worry: we've had to give him a crewcut to stop him making it worse, so now he even looks like the criminal that he is being treated as.
But while this is disastrous for our son, and his family, his case is anything but unique. We heard on the radio that it costs between £700-1000 per day for in-patient care. So, a conservative estimate of the cost of detaining Matthew and those other five young adults will be over three quarters of a million pounds by the end of this month. That is obscene. Its hard-earned tax-payers' money, not simply been wasted but actively harming those involved. Once you multiply those figures by the hundreds of other mental health patients lost in this system, that becomes serious money. Serious enough for local authorities to actually invest in building up and providing appropriate care themselves, within the communities where these young people - the most vulnerable in our society - should be.
We believe Matthew's personal limbo ultimately comes down to a few local NHS commissioning managers not communicating with each other, looking after their own budgets and resources, to the massive detriment of the system as a whole. So the situation may not even require extra funds to resolve. Instead, it needs proper, joined up thinking to use the funds more effectively.
For five months, we have been told Matthew is top of the waiting list at the specialist unit we believe can provide the help he so desperately needs. We were told it might become free in November. Then 'definitely' before Christmas. Then January, now 'possibly' March.
So, as we watch our son deteriorate, losing skills, losing hope, disappearing before our very eyes, we can't stand aside any longer. We have launched a petition to 'make room for matthew'. Yes of course, we hope it will make a difference to Matthew's plight. But really, it is because we believe we need to put faces to the problem - not just numbers - for the politicians and the bureaucrats and the middle managers to finally sit up, take notice, and start talking and acting together. So please sign and share our petition, and help give the voiceless a voice.