I’ve just been to a workshop in London run by National Voices, a charity dedicated to empowering people to be engaged in health and care organisations, and in their own care.
Wellness Our Way…Enabling people to influence.
And earlier this week I attended a Healthwatch annual meeting with the theme “parity of esteem for mental health”.
My local Healthwatch had brought together representative managers from local provider NHS Trusts and the Council to talk to us about the work they are doing to address their patients’ mental health.
Camhs, acute health trust, mental health trust, and the lead County Councillor for social care.
Two speakers were refreshingly honest, used straightforward language, admitted shortcomings, explained initiatives and training.
Three speakers were not.
All was well in their respective areas. And even if it wasn’t we weren’t going to find out, or even understand half of what they said.
Speak for long enough and people stop listening. Good tactic.
Speak in jargon and people can’t understand. Good tactic.
Say everything is really good and who are we to know whether it’s true?
I read the board papers for my CCG. Glowing about patient and public engagement. And about dementia care…diagnosis rate now up to 70%. Hurrah.
I asked the mental health manager of dementia services what support there is for people with dementia between diagnosis and crisis. She said there was a 36 strong clinical team in the north and centre of the county supporting people with dementia.
36? Come on. Pull the other one.
I was too taken aback to question it immediately. Had I got something terribly wrong?
(Nah…that must be the community mental health team. There isn’t a community dementia team.)
Oh and there are two staff in the memory service…one doctor, one outreach nurse.
So why am I writing this?
Today we talked about maintaining our resilience as an influencer, a person with lived experience, engaging with providers and commissioners. How do you retain your enthusiasm and energy when the bruise on your forehead just keeps growing?
Some of these commissioners and providers are naked. They ain’t wearing any clothes.
They say they are. They write that they are. They sit together in meetings pretending they are wearing clothes.
But they aren’t.
And I don’t think they even realise it.
Keep repeating an untruth for long enough and it becomes the truth.
Never admit fault.
Never disclose anything you can keep secret.
Keep hold of power.
Use unintelligible business balls language in board meetings about on plan, on target, activity, units, service lines, acceptable variation, harm free incidents…
And whatever you do, keep those bloody patient snoopers away from decisions about how we run our trust.
Oh, by the way, pipes up a NED, “I’m a bit concerned that each one of those statistics is a real person waiting for an operation…”
Good for you.
Hit them with your rhythm stick.
So how do we influence change and patient engagement, co-production, co-design of services for patients…for…um…US?
We keep at it.
We don’t shout. We don’t lie. We don’t accuse.
We just point out gently did they realise they had no clothes on?
We go on attending meetings, reading reports and minutes, absorbing jargonified double speak, digesting it, and vomiting it back – ever so gently – on a plate in total clarity…
You’ve got no clothes on.
Listen to us. We know the truth.
It’s not like you think it is out there.
Carers can’t get respite because of the blockages you put in their way.
People with dementia don’t get the social and peer support they need now and then to live well.
Self harmers sometimes get treated like animals at A&E. Worse.
Young people with mental health issues (1 in 10) don’t get the attention and care or treatment they need.
And you ain’t got no clothes on.
And we keep telling you.
When are you going to listen