The Trialogue meeting on 30 November was attended by 12 people, 10 of whom said they had lived experience, 5 were carers or family members, 6 were professionals and 6 said they were interested public.
Part 1 – Who has the power?
In MH – psychiatrists have no oversight and hide behind patient confidentiality
They always seem to close ranks, there seems to be corruption
The split between emotions and the body has not helped
There is lots of money to be made in therapy
Also pharmacological suggestions are made and more money is made.
The recovery college is making education more prominent
Not all in MH see a psychiatrist so others also have power.
In an ideal world the patient would have the power
Some psychiatrists are good
What sort of power are we talking about?
Is it who holds the purse strings?
Who knows what you need and how you feel? – YOU
The professional in front of you knows what the resources are.
Professionals also know different approaches that are available
When feeling vulnerable it is hard to investigate and find out yourself
Stigma can be helpful – ie it can lower expectations of the individual who can’t necessarily cope.
Not acting or ignoring certain issues means services can say they are doing well.
Negotiation is required.
Society has power. How they choose to view issues can have a big impact.
We have more acceptance regarding learning disabilities (LD) but lots of people don’t realise that mental health issues are not synonymous with learning disabilities
There are more opportunities available for LD people now, MH needs to catch up.
Making pre-judgements about people is unhelpful
People need a chance to show what they can do
We should all be treated with respect
People and services need to learn how to handle emotions
Power needs to be given back to the person
Understanding is good, but misunderstanding is rife within services
Variability is an issue, we all vary day to day.
The media need to understand more, they are very powerful.
Commercialism is an issue, profits above people.
Discrimination in work is wrong
It is better to be integrated then not, difference is a broad social problem.
There is lots of social isolation, so many people with different problems.
Lots of people have been undiagnosed and cope with MH issues alone
There are social issues which really need addressing, further segregating people is not helpful.
So so many people have been abused as children.
Physical needs aren’t always dealt with if MH issues are there
Legislation that is introduced often has unwarranted effect eg. division between teachers and pupils was a fallout of legislation that was meant to help.
We need to be able to get stuff in front of MPs etc. How do we do this?
Part 2 – How do we make change happen?
If society has the power then society can make the change.
Workforce going off sick, employers could help pay for help.
the person who offers the lowest tender for services tends to get the service
Some employers can’t carry the cost of people being unwell
Employers need to negotiate to adapt to be more accepting of people’s needs. In everyone’s interest.
How many firms look at the stress levels of their staff?
We all get stressed and can throw wobblies
How can firms support their staff?
Health care professionals (HCP) are often off sick with stress
In the public sector and caring services people are in a bad state and need support
There is an unhelpful perception that professionals have power but they often feel powerless too
In MH services there is a real power, the Mental Health Act (MHA) which gives professionals the ability to take away peoples liberty
Professionals have pressure on them too
How do we encourage these professionals with power to empower those in their care?
To self-manage, it is important to know yourself. Know what helps you and so on.
Help to forgive and move on
As a person with MH problems there is stigma, if psychiatry is patriarchal it can be very scary, but sometimes they can be very helpful.
A person first and a person with MH issues second is how people in services should be seen
Why do we have to tell people we have a diagnosis? Do we have to? Why do we feel this is necessary at times?
Parity with physical illness is sometimes helpful, but not being physically able to see the issue can be a problem.
Parity between MH and physical health should exist, one really does affect the other and influence functioning.
Educate the people:
Kindness and acceptance in the reception people with MH issues get is more important that the illness, whatever it is.
Coherence helps with being understood
This is sometimes why people are thought to be less intelligent as it is not always possible to make yourself understood when very mental distressed.
Having a MH issues does not automatically mean there is a cognitive impairment.
Causes of the symptoms matter more than the symptoms at times.
Demonstrate that we have skills to represent ourselves coherently.
Politicians look at what is politically viable
More MPs seeing us as sensible with variable deficits would be helpful.
Not everyone is the same
A diagnosis does not mean we can’t function.
Perseverance to find the right path is sometimes required.
We are individual, we hate people being put into a box
The experience of MH issues is subjective
We have to fight our own battles
Sometimes we need support to do this, other times we can do it ourselves.
We are people first, we are not our labels.
We need to be present, be out there being who we are, unapologetically
Being brave saying ‘this is my story’
Who puts the stigma there? Do we do it ourselves sometimes?
Is this sometimes about fear of being judged so we get it out there and get it over with?
People are unique, the same diagnosis won’t mean the experience of it all will be the same and coping levels will differ.
The understanding process is what we need to work on.
It’s ‘by the way’ it’s not who I am.
Loads of people are diabetic, they don’t have to announce it.
Self-preservation – say what you think people are thinking so they can reject us now before we get to know them
Changes expectations of others and the environment around us
We don’t have the right to judge others really
Learning how not to judge others is helpful
People are often scared.
Us and them thinking is rife
How do we be less judgemental?
Can we be?
Stop and think – you don’t know which way people have come, where people have been in the past.
Similarly if you have COPD there is an assumption that you smoke or have done and that it is your fault.
Advocates such as Stephen Fry can be really helpful in changing attitudes
We need more positive media
Soap operas , if done well, can be a good way to changing attitudes.
How can the media help us become more accepting?
Can we change the attitudes we encounter by educating the ten people closest to us?
Let’s talk to each other
Break the silence and speak out
There is tension between speaking out and announcing ourselves in a negative way.
The carers experience is also important.
Questions for next time:
What is the difference between breaking the silence and oversharing?