Matthew's Lost Year: Stuck In The Mental Health System

05/09/2016 13:36 | Updated 05 September 2016

Today is our 17th wedding anniversary. However, Isabelle and I won't be celebrating, because it also marks the first anniversary of our autistic son being sectioned, and disappearing into a 12-month spiral of Kafkaesque confusion, misinformation, wrong turns and dead ends within the UK mental health system.

Last September Matthew was a troubled boy, increasingly anxious, unpredictable, challenging and sometimes violent as a result. And on our anniversary he launched into a sustained assault on Isabelle, then I, because he was furious that we had taken him out of the school he loves for a psychiatric assessment. But in between these dark moments, he was capable of functioning within our family unit - making jokes, recording crazy music videos, walking the dog, singing and dancing along to his favourite music, going to restaurants, joining in with family nights.

However, having had no support whatsoever - despite, we now know, conversations between various professionals that Matthew was reaching crisis point - the only option offered to us when Matthew lost it, was to be sectioned under the Mental Health Act.


We thought this would mean he would finally get the help he and our family needed. How wrong we were. For over six months he was detained in a 'temporary' facility while we waited for an appropriate bed to become available - during which time Matthew became withdrawn and depressed. He literally started pulling his hair out. There was no autism-specific care available, and even his basic needs were barely met, as he piled on weight, sustained a broken wrist, and was unwashed and half-dressed whenever we went to visit. Desperate, we launched a petition highlighting his plight as an autistic boy who thought he was in prison. It captured the interest of the press, national TV, politicians, and 336,000 members of the public who were moved to sign our petition.

Miraculously, after six months of silence and dead-ends, a bed was made free within a couple of weeks. We were delighted and relieved, the media were able to report a happy ending, and everyone moved on.

Except Matthew....

Six months later, Matthew is still stuck in the system. His mental state has deteriorated further, his behaviour become more challenging. He has missed an entire year of school, his summer holiday, his treats, his cousins, his family. His life. And we are still waiting to be told what Matthew is dealing with, and what the plan is to get him out of an institution and back home. People with autism crave certainty, but we have now had an entire, heart-breaking year of having no answer to offer, when he asks 'when can I come home?'

Over this long year we have discovered that Matthew is by no means alone: there are more than 3000 other people with autism and /or learning difficulties stuck in the same system, most of them for years.

What we have learned from our experience, and those of the many families that have got in touch with us, is that young people with autism and other mental health issues are effectively treated as sub-human. Weeks and months and years drift by with little action, plan or communication, with no apparent sense that this is a human being's life drifting away. In Matthew's case, a year in, there is no sign of his ordeal ending. We have been told that his troubles are caused by nothing more than his autism and extreme anxiety. Well, what (autistic) teenager wouldn't be anxious when they have lost any reason to get up, any hope, any certainty, any motivation, any joy in life? He has become increasingly withdrawn and increasingly angry. Well, who wouldn't?!

We know the journey back to something resembling a meaningful and fulfilling life will be long and hard for Matthew, because frankly the real world is a pretty difficult place to live for him.

But all we want is a system that respects him as an individual, as a human being with rights. That seeks to find a solution that will work best for him, that is patient-led, not service-led. A system that is joined-up and holistic, where there is accountability and transparency; where parents are treated as vital and valued partners in the solution, rather than marginalized as an annoying inconvenience. A system where children like Matthew are caught and supported before the crisis even happens; and where care in his own community is available if a crisis does occur.

Who will pay for this, you may well ask? The fact is, the money is already being spent. Badly, inefficiently, and largely with private providers with little incentive to produce quick results, or let the funds flooding in to them be diverted to local authorities to provide care closer to home. Wouldn't it be better to spend that money in a better way? And the government have identified a better way: after the Winterbourne View scandal, they introduced a new system called Transforming Care which - on paper, in theory - addresses many of the inherent issues. But it has not been implemented in reality. On the front line, the money isn't getting through, the training, the people, the systems, have not been put into place. And in our experience, many professionals largely dismiss it as box-ticking, bureaucratic meddling.

So in the meantime we are left to hope, rather than expect, that Matthew will not spend a second anniversary in captivity. And dream that he will be here at home so that we can celebrate our 18th wedding anniversary.


Uk Family