Southampton – April 2019

The Mental Wealth Trialogue was held on Mon 1 April at The Third Age Centre, attended by 16 people. Of those, 8 identified themselves as having lived experience of mental ill-health, 1 as a carer, 6 as professionals, and 2  as interested public.

Question: What kind of change do we want?

Been exploring herbal remedies

Want this as a substitute or complementary to NHS treatments

Walked into corruption of NHS

Can help with mental health side effects or chronic pain

Found vast amounts of false data

Evidence based treatments – never looked at on population curve about where patient is

Some patients get better some get worse

Different paradigm for those learning to manage long term conditions

Different tools – mindful meditation, structured exercise, dig deep into how to enable people to develop skills

Holistic medicine – some surgeries do have acupuncture, homeopathy etc.

Acupuncture has helped my physical pain. I have to pay privately.

Shame that there are inconsistencies

People want to be empowered to find their own solutions

Need more funding to support prevention

Research into mindfulness and meditation – if you’re in a certain place

If you’ve had previous trauma, mindfulness doesn’t help

What would you like the psychiatrist to ask after hello?

Individual approach, want to tell story

Individuals need to be listened to, not subject to specific treatments being promoted

Stress breakdown point means we fall apart

I would like help to get stresses down to below that point

Someone may actually need a cleaner rather than medication

Would like the psychiatrist tosay ‘would you like a drink?’ – humanise the session

When I see a doctor – why is it you’re here to see me today? Invites open discussion.

Went to see GP who was absolutely spot on ‘What’s going on with you today?’

Most people don’t ever see a psychiatrist

Would be good if they asked people what they think would help

I went to see a psychiatrist in a smart suit – he said he couldn’t see what was wrong with me

People look at you and make judgements from that

Research show highly intelligent people are more likely to kill themselves

I used to work in NHS – Italk – working towards parity of esteem between physical and mental health.

I’d like to change – getting rid of the stigma around mental health

Trying to explain about anxiety can be very difficult.

What is anxiety?

Anxiety states that makes you incompetent and those that make you uncomfortable.

Eastern tradition is that our feelings are in the body

Language used is very limiting – anxiety, depression, mental health

Good experience of psychiatrist – he knows and understands what I’ve been through

Psychodrama affected me really badly as I was asked to relive past trauma

Anxiety can be really bad, can identify the process now and know I’ll get through

What I’d like to see is a change in the impact or effects of certain treatments and therapies

Now able to understand my healing journey through going to a private practitioner

Moving is the way out of certain mind states

Part 2

Have been asked to get a mental health network off the ground

What change do people want to have a real voice and real power?

Like the idea of a mental health union

Don’t know the answer to this

Maybe wellbeing maintenance network

Recovery used to mean one thing now means something else

Clients / service users / patients. Labels divide people, makes them lesser

Many staff who work in mental health have their own mental health issues

How does it need to be different?

We need stigma, this person can’t be loaded up

Maybe understanding not stigma. Learning to understand each other

Lived experience with disability – feel comfortable that I can’t do this, can do this

Best training was mixed with service users

Specialised unit but as a young person there’s no support through CAMHS

When I had a mental health crisis at college, response I had was ‘silly little bitch’!! People need frontline help – neutral point of intervention

Change in law meant networks vanished re finding information

Bring the community so its not just professionals

Don’t just want consultation, want real power to make change

What is community? When are you going to ask people with lived experience what questions do we want asked?

Agendas – in good position to challenge how to make changes. Different viewpoints matter.

When I was 12 I was in a psychiatric unit, often people were institutionalised for life. Main hospital was scary. Out of sight, on a hill, patients in pyjamas, staff in uniforms

Have things changed? Lot of stigma. Haven’t changed that much. Don’t have to explain generally, even with physical conditions

How would we know that we’re getting somewhere?

Creative arts practitioner – getting refugees to tell their stories about their lives, not about being a refugee

Seeing people as whole people

Having a label / condition can be dehumanising

More empathy, more compassion for others, more than others

I like getting older because I’m still here. I’m a survivor

Matters to me that I develop better management and get better at handling me

 

Question for next time: How do we normalise the experience of mental ill-health?