Twenty people attended this fourth Trialogue in Southampton at the Old Chemist in Bitterne Park. Of these 15 identified themselves with lived experience, 11 as professionals, 4 as carers or family members and 3 as interested public.
Part 1 – What is the difference between breaking the silence and oversharing?
There are stages of breaking the silence. Not just suddenly one day let everyone know. Very gradual.
Tell one person then bit by bit over months, the stigma from the first people you tell prepares you for the external stigma
don’t announce ‘schizophrenic’ but don’t be ashamed if you are asked.
This is me and oh by the way…
People define themselves as mentally ill, who are you as a person beyond the illness?
people who have epilepsy don’t announce it unless they are expecting unusual things to happen where others need to know so why do we feel the need to?
It feels like we have to confess.
Reactions can be so bad so we end up not sharing at all.
Most friends become people you meet via the system then you don’t have to cover up with them.
Why do we say confess?
Is it stigma driven?
May be it gets it out of the way then we will know if they’ll still want to know me.
Don’t want others to treat us differently.
It is also cultural, we were brought up not to talk about mental illness
The media drive opinions and often have negative connotations.
We aren’t feeling unwell all the time!
Recent casualty episode has a bi-polar storyline, sensationalist as usual
What do all these labels mean?
The DSM is based on psychiatrists seeing people in stressful situations but change the situation and often people aren’t so stressed so levels of ‘illness’ decrease.
Interpretations vary and there are lots of issues with long term medications
Terminology is changing.
There are lots of wrong diagnoses, much mental illness is down to trauma, in future years diagnosis will diminish.
Medications are being used less and there is more emphasis on things like exercise.
They are trying to get it right.
symptoms for each individual will be very different, if you can’t get up, you can’t get up.
Diagnosis reinforces stigma.
It is easy for people to self-label too
In the latest rethink magazine there is lots on scans and blood tests for psychosis.
but lots of mental illness is linked to trauma, we are beginning to understand this more.
Is trauma a red herring, should we think in terms of stress break points? Once past your personal stress break point then stress for you needs to be reduced
There is little education to help handle the things that are an issue.
20 years ago yoga and lots of this sort of intervention was available but now so much is taken away it seems to be just meds on offer.
we are still Guinea pigs for a lot of medication.
More and more children are becoming unwell
Our society has become such a complicated place to live.
There is a place near Salisbury which offers nourishing interventions to increase resilience and wellbeing in staff at the frontline, great things are available but they can’t get the staff to attend them. No one thought to pay for the backfill for the staff to attend and there are not enough staff to release them easily.
We need to be political.
The NHS won’t be here in 10 years. It is in a really poor state so when privatised it will be easier to persuade people
We should be political about this.
Benefit cuts are having a devastating effect on people’s lives.
Teaching has also gone downhill, there is increasing pressure on pupils to perform from very young age. What happens to the children who don’t perform?
The education system is imploding too.
It is a desperate situation.
What can we do? We need to keep talking about it certainly.
After a suicide it is ‘we’ll learn from our mistakes’ but this keeps happening.
Mixed feelings about sharing personal experience
Being part of the Human Library provided more positive then negative outcomes for one.
In a recent PIP interview, where disclosure is required, one experience was:
‘Have you felt suicidal?’ answer ‘there have been moments’ reply from healthcare professional ‘well why haven’t you done it yet?’
This had a devastating effect on mood. Was this the intention?
So it depends on the people in front of you too as to how much you share.
If they have experience of mental health issues then it is easier to share, if not they may
experience you as oversharing.
being able to pay for your own treatment via personalisation is good as you can choose a range of things to suit, however there is only one option via the NHS.
The PIP system is institutional abuse. the timing of appointments is cynical, with intrusive unkind questioning done by unengaged and blunt ‘professionals’ and now mental health issues don’t quite qualify by themselves.
Discrimination in action.
The whole process is traumatic.
When the NHs is privatised it will be like natural selection.
Those who can afford it will get help others who can’t get nothing.
There is no understanding of the impact of illness on mental health in the group of PIP assessors.
So we want to break the stigma but we also want a life.
Social media is a new menace, things that are on there from childhood when one may have been unwell can come back to haunt you as an adult.
Part 2 – Where is our private life?
One person’s overshare is another person’s ok.
It is difficult to get staff to invest in their own wellbeing
People do not look after themselves
As a professional it is hard to admit to having an illness
We should share with pride not share with shame
we can be very compassionate to others but often not to ourselves
As a professional do you speak out when you need help or keep it quiet?
Hearing others share helps.
We could admire others for their bravery in overcoming adversity and celebrate being human beings with great ability and with dark sides too.
This would reduce stigma
The bodily state has a big impact on the mind. This needs more attention
We compartmentalise knowledge. Alternative medicine, NHS services, social care, we build boundaries. It is a systemic issue, once you are in the system it is difficult to change lanes.
following a breakdown people treat you completely differently.
Engaging in the political debate is also limiting because things weren’t always so good in the ‘good old days’ either
There has always been mental ill health in children but they were treated differently in the past.
Patient advocacy is a good thing
there have been a lot of positive changes
The capitalist society is unhelpful
If the services were a shop what sort of shop would they be? – a DIY shop.
We need an Open All Hours – you can go in and find everything you need there.
Communication breakdown between receivers and givers of care appears clear
Dialogues like the Trialogue that encourage equal sharing of ideas needs to be capitalised on.
In the system of healthcare, everyone becomes a victim of it.
The answer lies outside the current systems if we are going to be radical.
Language – how do we enable patients to develop tools to describe the issues in language that the professionals will take seriously and understand?
Recovery colleges run courses on understanding how the system works.
‘Under’ a psychiatrist, are we ‘under’ any other professional?
The power needs to be diminished, the hierarchy is not helpful
There aren’t enough psychiatrists and professionals to go round and they haven’t got the time or resources to really help
This government needs to realise what they are doing is going to have far reaching implications.
Languages exist for any profession but there is a real emphasis in services in meeting people where they are at.
Hopefully newly trained health professionals are coming out of training with this, the system does batter them but the compassion is still there.
People are doing amazing things
We need to work together, co-design more
Question for next time:
How do we build resilience in a community of givers and receivers of care?