10 years or so ago I was on the slow train home from a long meeting in Whitstable. A mate rang to say Fran’s son J had been sectioned and admitted to a unit in East Anglia. Around 140 miles away. He was 16.
I remember crying on that train. Through horror and devastation. Connor was a chunky slice of happiness then. Laughter and joy. He and J had grown up together, sharing school concerts, after school club, birthday parties and get-togethers. Fun, love and family.
When J finally came home, we did what us parents do: tried to change things. Composed letters and emails, pushed for an investigation into chilling failings and better crisis provision in Oxfordshire.
Connor remained a chill pill. Fran captured him making his own lunch one day at hers while we wrestled with the phrasing about sexual assault in a Word document.
Three years later, Connor was in crisis and we stumbled across a nearby ATU. A revelation to local families who had no idea of its existence. We admitted him and he died. [A constant haunting of did we not know about this place because it was known to be shite? And almost worse… if yes, what does that mean?]
We thought, if nothing else, his peers would receive gold plated support from this point on.
Since then J has spent months in ATUs in Wales, Lincolnshire and just outside Oxfordshire. His family have pounded motorways, the phone and internet trying to spring him. Trying to generate appropriate support in Oxfordshire and the life he deserves.
J’s inpatient stays have overlapped with A, another young man from Oxfordshire. Two families. Undertaking the exact same work with the exact same people. Oxford Health, the CCG, NHS England.
Meetings, anxiety, fear, rage, exhaustion, more work constantly chasing up meeting notes and responses. Weeping.
Facing a brutal wall of disregard, disrespect and contempt. Deceit, obfuscation, lack of interest and blame.
These various inpatient experiences have involved over-medication, abuse, injury and deep, deep trauma. And parents who try to negotiate calling out abuse/failings while living in fear of reprisals. Deep powerlessness and frustration. Intense and giddy frustration too easily spun into something else by those sitting at their desks in their well paid jobs, chomping on their M&S sarnies, idly scrolling through emails. Diss/missing parents as irrational, as difficult, as the issue.
I can remember hearing how packed the usually empty car park was in one ATU as the CQC were due to inspect.
I can remember one mother describing how she hid in her car one day to try to catch the psychiatrist who was never on site when she asked to see them. She’d noticed that they had signed in in the visitors book that day.
The fob offs. The lies. The accidental overlooking of emails. The absence of treatment. The harm. The abuse. The trauma…
There was talk of course. So much fucking talk. Of homes being found in Oxfordshire for these boys. Of funding pockets. Grants. Renovations and more. Transforming Care talk. And more talk. Next month. The month after. By Christmas…
All the while emails remain unanswered. There were gaps in information, contradictions and empty promises.
Advice and suggestions from families, self advocates, My Life My Choice and Oxfordshire Family Support Network around developing new models of crisis support over ten years have been ignored. Contact with the higher echelons came to nothing. Ray James. National Director for doing fuck all at NHS England and No Improvement (for certain people).
J is currently at home. With his family living in siege-type conditions. Every day is precarious and unpredictable. A team of exceptional support workers is held together by the glue of Fran, family, love, determination and bloody mindedness.
As I write this, A is being taken by his parents to the local 136 suite on a section 3 for ‘treatment’. The only aim of admission is ‘improvements to the relational security surrounding him in the community’. From here, his family have been advised, an inpatient ‘learning disability bed’ is being sought. A needs a single-person set up and there are very few of these in the country so he could end up anywhere. The last time the family were offered a bed for him in Northumberland – a 6 hr drive from Oxford. For the moment, A’s family are happy he is remaining in Oxford for the weekend and A is happy because they are bringing him some Ratatouille stickers tomorrow.
As to what happens next week, who cares? No really. Who cares?