Suited and Booted – the long view￼
This is his story; I was privileged to bear witness. He has not given permission for it to be told, he would find that difficult, so I will not use his name, he is T.
It is a story in three parts; a story worth telling. Firstly, one of love, knowing and understanding.
Next it is a story of an institutional system that didn’t know T, it also didn’t know any better, it assigned reputations and failed to recognise the damage it inflicted.
Lastly it is a story of human courage and decency, and of the potential we all have when we find our place, our space and our people.
Part 1: Of love
Every month his mum, frail and standing less than 5 foot tall, made the long journey on public transport all the way from her home in Glasgow out to Merchiston Hospital near Johnstone; a round trip of no less than 3 hours. She carried with her bags of clothes, food and drinks for her boy; some of which he never got to see.
When she heard he was going to be moving out of the hospital into his own home, her only request was that he be able to wear a suit. In the hospital he wore baggy t-shirts and joggy bottoms; the unofficial hospital uniform.
She was assured that when he moved, he could wear whatever he liked. A point of note – there was no mention of his preference for snappy dressing in any of his case notes.
Part 2: Harm and reputations
He was described as one of the ‘most challenging’ people in the hospital. He was restrained many times a day, every day. His case notes, a litany of phrases describing his behaviour. The phrase ‘spontaneous aggression no obvious triggers’ was used repeatedly as a way of indicating how ‘out of control/dangerous’ he was.
But let’s think about this for a moment from a different perspective. What this phrase actually means is that, despite the fact that he had lived in the ward for years, nobody knew or understood why he was upset. No one had worked out how to ease his distress other than with restraint using a 5-man pin down. And he was the one who gained the reputation for inappropriate behaviour.
Incidentally, there was no mention in his case files of his liking for a dress shirt and tie. The focus was on managing the behaviours more than knowing the person.
Part 3: Of human courage and decency
The recommendation when T moved was that he should have 5 people working with him, at all times. Enough to respond with restraint were he to become upset. We committed to trying harder to ensure we reduced the upset and distress in his life. Initially he moved out of hospital with 3 people working with him at all times. After a month this reduced to 2 people and some time after, he was supported by his small, dedicated team on a 1 to 1 basis. And that is the way it has been for the last 20+ years.
He lives in his own home, he has great neighbours, he is well known and regarded in his local community. He is loved and respected by those who are privileged to know him. And anyone who knows him knows he wears a suit or at the very least smart trousers and a jumper; that short sleeve shirts are a no go (they have got something missing).
The Next Chapter
She knew you see, his wee mum, what was important for him to lead his good life. She knew beyond the case note entries and the reputations layered on by a system that focusses on behaviours and loses the person.
It is often the small things, that become huge things if they are not recognised and respected. How can you be your best self if you cannot even choose the clothes you wear? As Billie Holiday so eloquently said;
“You’ve got to have something to eat, and a little love in your life before you can hold still for any damn body’s sermon on how to behave.”
We need to create more space for love to drive the changes we need. It is not a specialism of our Health and Social Care system, but families have it in abundance.
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