The Silent Screams of Service Users by Steve Flatt and Pippa Hunter Jones

The silent screams of “experts by experience”.

There is a bloody battle going on in mental health services. It is not a battle fought with guns, bombs or knifes but the blood is real nonetheless. The suicide rate is rising, more people are dying of poverty and deprivation today than for many years. In 2013, in the UK, suicides reached a 13-year high, with population level data linking these suicides to austerity policies (Barr et al, 2015). The sick, frightened and disabled are the victims whose stories are rarely heard above the white noise of statistical analysis, learned papers delivered by earnest academics who are seeking to show how good their work is and please their political masters with tales of success and value for money.

The stories of those for whom mental health services, social services and benefit support did not work are airbrushed out with great swathes of digital images provided to the media in sound bites like, ““Having read thousands and thousands of transcripts, you can see the presence of the therapeutic relationship, and feel it in the same way as if you were reading a novel – you would feel emotions, fear, happiness. The written word will evoke emotion,” (Sarah Bateup, Ieso Health Independent march 20th 2017).

And reading a novel is the same as real life? – do we experience our lives as though we are in a novel? Ask a sufferer whose distress has not been lessened or help been offered, if their experience is like being in a novel, they will say it is more like a horror movie. Ask them if their story has been listened to and they will look at you as though you are an alien.

I attended the ERSC conference in York on 3rd March and listened to stories of service users whose experience of a “therapeutic relationship” left me feeling tearful and angry. Stories of prescriptive medicine, incarceration, labelling and a determination not to listen to the stories of the people the professionals are supposed to be helping.

There remains a powerful sense that despite the highlighting of our psychological wellbeing as a matter to be attended to, to improve the state of the nation, the reality remains that of business as usual; academics collate data; practitioners continue to deliver “evidence based” protocols that bear little relationship to a natural human interaction and ask clients to complete forms that measure the absence of failure rather than the presence of success and then declare that the intervention has produced a statistical recovery of better than 50%. The attention to the story and experience of the client is ignored – that the person has not changed their behaviour, been more sociable, able to be independent or carry out a meaningful activity is not measured or even recorded.

The McNamara fallacy describes the current state of mental health services beautifully:

“The first step is to measure whatever can be easily measured. This is OK as far as it goes. The second step is to disregard that which can’t be easily measured or to give it an arbitrary quantitative value. This is artificial and misleading. The third step is to presume that what can’t be measured easily really isn’t important. This is blindness. The fourth step is to say that what can’t be easily measured really doesn’t exist. This is suicide.” (Yankelovitch 1972)

The McNamara fallacy (also known as quantitative fallacy), named after Robert McNamara, the United States Secretary of Defense from 1961 to 1968, involves making a decision based solely on quantitative observations (or metrics) and ignoring all others. On this basis, according to the data the USA won the Vietnam war! The reason given for ignoring other “soft intelligence” is often that these other observations cannot be proven.

It is not the suicide of the service but of the person who experienced it – or rather – didn’t experience it. All the while the professionals continue to congratulate themselves on another superb set of statistics. Please remember that numbers don’t talk but people do!

“Partial or inaccurate information is often a crucial characteristic of the incubation period (toward disaster), but it is compounded by poor intelligence, the failure to seek out relevant data or interpret the available data properly. Cultures of denial, secrecy and protectionism, and fragmentation of knowledge about problems and responsibility for addressing them, are often implicated in such failures” (Turner and Pidgeon, 1997).

When will the stories of service users be listened to and the realisation dawn that an effective mental health service requires professionals to listen with a constructive ear to the people whose experience can tell us how professionals might be more effective? If we continue to assume that the professionals always know best and that their idea of a good service is based upon data, then the project that is “good mental health” is doomed to perpetual failure.

References:

Barr, Benjamin , Kinderman, Peter and Whitehead, Margaret (2015). Trends in mental health inequalities in England during a period of recession, austerity and welfare reform 2004 to 2013. Social Science & Medicine, 147. pp. 324-331

Turner, B.A., Pidgeon, N.F., 1997. Found in Martin G, McKee L, Dixon-Woods M (2015), Beyond metrics? Utilising soft intelligence for measuring healthcare data and safety, Social Science & Medicine 142.

Yankelovich Daniel “Corporate Priorities: A continuing study of the new demands on business.” (1972)

Seminar 3: Co-Produced Poetry by Adam Montgomery

To conclude Seminar 3 (hosted by the University of Leeds) spoken work artist/poet Adam Montgomery (aka “Ad-verse”) created this poem from the impressions and reflections of the attendees:

Co-production is underpinned by an authentic sharing of power

It would seem this notion causes some mental health professionals to cower.

Participatory citizenship creating spaces to be human & share.

Instead of us and them can’t it be that we all care?

We have more in common that not and that’s true across the board.

Allowing peers a chance to help each other is its own reward.

It helps to help and given the chance people will provide insight and support.

There’s great value to be found if we allow inclusivity of thought.

Social networks empower allowing space to develop relationship skills.

Money matters but surely there’s real value found outside the bills?

Who controls the purse strings? Can we dip into the pot?

Resources might be limited but co-producing can bring us a lot.

It’s an opportunity to do thing differently, changing status quo

Who describes the purpose? What are we trying to show?

What does co-production mean? Is there a clear definition?

Are services willing to share power or do they treat the term with suspicion?

Are mental health professionals essential for co-production?

We can invite them to play a part but do they want to be in the discussion?

Sustainability & transformation can be found by consulting all

Each can make a contribution be it large or small.

Some services currently operate on compulsion and coercion.

Will co-production allow for more democracy and co-operation?

Democracy redefined and power equilibrium shifted on the way.

Supporting resilience and survival of self but letting people have their say.

It shouldn’t be tokenistic, how do we make it authentic and true?

For genuine sustainable co-production what do we need to do?

Vested interests need challenging and minds opening would be a start.

Tapping into the human connection which we all hold in our heart.

Decisions made with people for people, services to fit users needs,

A person centred approach which encourages people to do good deeds.

Allowing people a chance to help others realising it helps to help & grow.

Positive outlets for effecting real change allowing hidden expertise to show.

More meaningful working relationships between services users and providers.

Acknowledging often the most expertise is found within those insiders.

The patients, the people being treated, those with the problems often hold solutions

These can often be found by enabling meaningful contributions.

SO many opinions in the mix, who’s to say which one is right?

Perhaps we all have some valid points without enquiries we won’t have insight.

Some are resistant to change, change takes time and time is money.

The complex nature of organisations and their cultures is far from funny.

The term can bring confusion, what does it mean and what does the language reflect?

I think it’s about all having their say and being treated with respect.

Given opportunities to play a part in positive changes for systems and self.

Knowing you’re valued can do wonders for self-esteem and mental health.

Self-esteems often taken a battering with decisions being made for you not with.

Together in coproduction we can hopefully make it easier to live.

Where does co-production live? It should be in the community.

For everyone to play a part and for all effected and involved to see.

A quality approach to develop excellent services, hearing the voices of all.

Allowing people to contribute with empowerment fundamental.

Interdependence, collective humanity, transformation & change.

Overcoming inertia and seeing room for systems to be rearranged.

Service user involvement and a willingness to share throughout

I know co-productions possible but that there are many who doubt.

Some people are resistant to change but that doesn’t mean we shouldn’t try.

Services can cause frustration but being heard can help good come from the sigh.

Taking time to consult with people letting them play a part with some ownership.

Empowering through real life opportunities and support should they happen to slip.

We’re all people with assets and issues whichever side of the needle we sit.

Co-production can be a positive thing with a need for clarity when defining it.

Who are you going to co-produce with and what will you create?

We’ve co-produced with mother nature to produce a very warm state.

So I’m sure some of you are wondering if the end of proceedings are near.

I’m happy to announce that at least for my bit the end is finally here.