A tale of three boys and what isn’t

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.

J and Connor’s shared birthday party.

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?

J and A.

7 thoughts on “A tale of three boys and what isn’t

  1. Reading this Sara makes me despair. What on earth is going on? Are the people who work in local government and health aliens? Have they no families of they own? Do they only think that their own lives are worth more than anyone else’s? Are they completely devoid of empathy for other people, especially the people they are being tasked and financially rewarded to help?

    They have no concept of what it is like to spend day after day tiptoeing around someone with a learning disability trying desperately to keep them calm and happy. So much more difficult in lockdown, when day services are shut down. Growing tired and anxious about whether they may need to be sectioned and then dreading the loss of control over their lives if you ask for help. Sometimes there is no option because exhaustion kicks in. Guilt and then mother blame is their weaponry to hit you with, plus the lies.

    The NHS has a rotten underbelly and Stomp and Ask, Listen and Do initiatives are hardly ever taken on board when clinicians are dishing out powerful medication. Just sweeties to keep us quiet.

  2. This is so sad – no so appalling that these kids ( young men) and their families cannot get the help and support that is desperately need!!

  3. This is so sad Oxfordshire just do not care so wrong even with good charity’s in Oxfordshire thing still do not get better xxx

  4. Where are the experts on autism who do academic research constantly (I mean other than you, Sara), as they need to research into why plans often don’t translate into action ie. instead of describing what should be happening in theory, they should look at why no one cares enough to make it happen.
    Has anyone ever come across a transition that was done properly?
    If we state the facts, things might then improve to some degree.
    Somebody said the other day that a particular person in hospital couldn’t be helped because of ‘fear’, fear of the person. And while there can be fear, definitely, isn’t the idea that we try some things so the person doesn’t have to resort to making people fearful? They may know no other way.
    Isn’t it a learned behaviour, because being feared is the only way to get results, get noticed, or get attention?
    So, if a family lives under siege conditions, as many do, could it be that the person is trying to control their overwhelming world by controlling their family?
    This blog is active research, not just a piece of funded research that is shelved.

  5. Pingback: Moments | mydaftlife

  6. Correction Narender Kaur, active research is objective, balanced and straight to the point.
    Poetic prose and pretty pictures do not tell the whole story and never will.

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