Dear NHS Trust internal reviewer,
I understand you are about to start an internal review into what happened to our son. An internal review. I’m not sure how you can effectively investigate the potential failings of your own organisation but hey ho. It’s as if we now exist in some bizarre netherworld where nonsense rules.
“Hey guys, what happened here?”
“Nothing guv. We followed the rules. Honest.”
“Okey dokes. Well crack on with the good work. Catch you laters.”
I don’t know if you are aware of this, but LB never once left the house without someone with him. He needed more care than most. He needed actively protecting. This is probably the part that breaks my heart the most. We gave him that level of care and protection for just over 18 years. I was, like most mothers, a mama lion. Fiercely protective of my cubs. Instinctively protective. Particularly the one who needed it the most.
We assumed this level of care and protection would be replicated in the unit (without the love of course, and without genuine empathy even). We assumed he would be safe.
Somewhat ironically, we’d already made an official complaint against the Trust and local authority in April. A PALS complaint or something, I still have no idea what PALS stands for. It was a comedy complaint really. The outcome was an assertion that LB received an acceptable level of care before he entered the unit. He died two weeks later while I was still in the process of responding to this.
He died two weeks later while I was still in the process of responding to this.
There isn’t an awful lot more to say after that sentence. It’s a bit of a game stopper really. And this is a game. A crappy old game in which we have little power and no say over the rules. A game we never wanted to play. A game I despise.
I haven’t just written to rant as that would be a bit unproductive, although vaguely satisfying for me. So I’ll end with two requests. Please don’t use acronyms or jargon in whatever you end up writing.
And please don’t lose sight of the exceptional dude LB was.
Yours faithfully,
Sarasiobhan.
mydaftlife 
A very handsome, gorgeous young man Sara XX
Thank you Sara for speaking with eloquence and reality even through the pain for those with no voice left to speak…I cannot even imagine the cost, you are my hero
PALS is Patient Advice and Liaison Service. The ‘Advice’ bit says it all, really. Means the ‘Liaison’ is a one-way street – you, as the Patient, are (directively) Advised by the Service what you ‘should’ (= very close to ‘must’) do.
If it were to be a Patient-centred organisation, it would need to be something more like a Patient Assistance and Listening Service. Which it isn’t.
The abolition of the Community Health Councils, 10 years ago, deprived patients and their carers of their inconvenient statutory right to be heard in the shaping and oversight of the Health Service. No idea how deliberately cynical that move was, but I notice no Government since has had the faintest interest in reinstating the confiscated rights.
Thanks for explaining Kay.x
Dear Sara, I am so so sorry for what happened to your beautiful son. I cannot even begin to imagine how you are getting through your days. But you are and you are clearly an amazing wonderful loving Mum. I wish you strength and send you lots of love. Thanks for sharing this too