Southampton – Sept 2016

Thirteen people attended this second Trialogue in Southampton at the Old Chemist in Bitterne Park. Of these 10 identified themselves with lived experience, 7 as professionals, 2 as carers or family members and 2 as interested public.

Part 1

Does the language we use matter?

At a recent suicide awareness conference one lady used the term ‘committed’ suicide. This is upsetting as it refers to a time when suicide was against the law which is no longer the case.

Sometimes attitudes change but our language doesn’t reflect this, sometimes blame is suggested.

Bi-Polar once manic-depression, new label seems better as less judgemental

Awareness is being heightened and is improving things.

Cultural differences exist eg. In USA the term dwarf is considered very offensive but they use the word retarded which is more offensive in the UK

Mental health is a term that gets used inappropriately to refer to ‘mental ill health’ All of us have mental health but not all of us will experience mental ill health.

IT is helpful to look upon mental wellbeing as a spectrum

Sometimes we are lazy about language and don’t think about the words we use

Talking about others mental health is easier than talking about our own.

Umbrella terms like ‘COPD’ get used in the same way as ‘mental health’ gets used. Mental Ill health is felt to be a more appropriate term to use.

In a way the wording doesn’t matter it is the attitudes that need changing. It seems language gets changed but attitudes don’t always and are playing catch up with the terminology.

It is quite organic.

In Self-Harm eg. The word Deliberate is still used in front of this in healthcare widely but in service user ciricles it is considered to be a judgemental word and so the term self-harm is used alone. Deliberate is a loaded words and can close off discussion about why something has occurred leading to assumptions and lack of care

What happens to change attitudles?

Over time, the GP becoming more familiar with someone can stop them describing them as ‘manipulative’ as their understanding increases.

Getting to know the person reduces the negative attitudes seen.

We need to understand what is going on for people

Assumptions don’t help

It is so easy to judge people ‘attention seeking’ but if we gave people the right attention the we would be able to help.

Closed minds – people get written off

We are lucky if we are able to articulate but this is variable and can be really hard work.

When your MH is challenged it is harder to articulate what you mean.

Does the patient drive changes of terminology? Sometimes it is them using new language that changes this.

The NHS using terms like mental health more in order to try and put a more positive spin on things, focussing on prevention of mental ill health.

There is a political angle to language too.

Language in other areas in improving too eg race relations. Being respectful and treating others as we wish to be treated.

Depression is an umbrella term – it is so universally used it has variable meanings to different people.

Politically there is more positive language, more education and community work but this doesn’t always compute with what happens on the ground in statutory MH services.

There is a lot of rhetoric, saying the right thing but not doing it. Eg at the suicide awareness conference lots of talk about peer led work but material advertising the peer led day the following weekend went missing and had to be retrieved and no one would announce it existed at the end of the professional conference. Complete lack of support for the actual peer led work being done in that instance.

It felt there was a lack of trust, the peers did not feel well supported.

Time to Change have had a role to play in raising awareness for the public.

Still people are not encouraged to talk about their feelings.

You have to be really unwell and really persistent to get a service.

Southampton has a high suicide rate and there are fewer and fewer services available, there is a massive gap.

IT is a postcode lottery.

A wellbeing centre is needed in Southampton as a minimum.

The drop in centres can be the places that save peoples lives, that can swing the balance between suicide and life.

Some services can be accessed by direct payments but this means that they are exclusive to many.

The term member is preferred to service user, when part of a service to be called a member is nicer.

Staff also have MH issues.

Sometimes terms change from the ground up but language change from government level down also happens.

There is some detrimental language about those not in paid work, seen as not valuable.

There is no respect for those who can’t work coming from the top.

Stigma once a label has been issued is a real issue.

It will be a long term change, not overnight to improve things.

The media still has problematic perceptions.

Professionals should use better language and lead by example.

There are constant barriers to peer led work despite the rhetoric that exists about it.

What are these barriers?

Asking the government where the change in attitudes is could be good.

Lots of people are affected by MH issues, surely some politicians are affected.

But more aren’t.

There is lots of institutional stigma.

Some celebrities are trying to break down barriers.

Part 2

What are the barriers to peer led work?

At the suicide awareness conference someone had a picture of a therapist and the patient, the patient was seated lower than the therapist – it is a power thing.

A collaboration is what is needed

Equal relationship.

Statutory services say they want the peer led stuff but they are the ones with the power.

They need to actively back the peer led work

People are still keeping secrets eg. Over suicide attempts, for fear of stigma

People with MH issues seen as unclean or sullied in some way.

It is sad not to be able to share.

Recovery was a grass roots thing, it really challenged the medical approach but now services have grabbed it and it is used to blame the individual for not recovering.

It has been coopted and the meaning of recovery has changed from what was initially intended.

Now some service users are anti-recovery!

Somehow, despite ‘improvements’ services continue to do the same thing.

Outcome measures – poor. How can you measure recovery!?

One outcome measure is getting back into a job, this is problematic for many.

This is not person centred, it is productivity led and may be bad for the person.

Person centred is banded about a lot but services are not experienced as this.

The treatment model is still predominant.

So now we feel like a failure for not ‘recovering’ in 6 or 12 weeks, whichever is allotted for treatment.

Recovery is a very individual thing.

Recovery colleges are a step in the right direction though. They are excellent.

More support early on in the process of mental distress would be really cost effective.

Work can be therapeutic for some so it could still be encouraged.

MH services are likely to view people as not being capable of work.

They often look down their noses and have a patronising attitude.

Reducing stigma in the workplace is key

Openness regardless of whatever the problem is should be allowed. Disability movement has tended to be divided too.

1:1 versus group therapy, we understand the preference for group therapy as it is cost effective but there are not benefits for all, not all can do it.

CBT can be very successful but doesn’t work for all, especially when things are really difficult.

Timing matters.

Work can be an avoidance measure.

Using universal parameters to measure things in the world of MH does not work.

Voluntary work and creative groups are really good for people

Productive is a loaded word, often t his means financially

Money is power

We need money to survive but it shouldn’t just be money that is a measure of productivity.

Lived experience and shared community is irreplaceable.

Very important.

The direction we have come from matters.

In work there is massive discrimination against those with MH issues.

There is no extra support to allow people to re-enter the workplace.

Employers might be happy to be supportive but people fear to show they need support.

How do we break the barriers stopping us from getting support when we need it down?

Encourage people to share in the workplace?

Colleagues can become jealous of the ‘special measures’ that are put in place to support people.

We need to stand up for what we believe.

Some of us can’t get up in the morning.

Historicallly we haven’t spoken about MH in the workplace. Those at the top  need to acknowledge it is an issue.

Paying for training is so hard.

Position and status matter in whether you feel safe to share.

Not a good career move to tell people you have depression

How can we persuad powers that be that wellbeing centres etc really work?

Power, money and professionals.

Bums on seats may be seen as what is profitable.

Howdo we lobby for change from the bottom up?

Who has the power?

How do we make change happen?


Questions for next time:

Part 1 – Who has the power?

Part 2 – How do we make change happen?