Sharing power in the planning and reviewing of services

Last Thursday I attended this training event at our Llandrindod office run by two Participation Officer colleagues – Carla Rosenthal and Carol Hay. As one of the attendees reported later it was “interactive, engaging and full of useful content”.

The session was arranged specifically for people who want to become citizen representatives (and a couple who already are). It is key to our work in the mental health team, and specifically for our Comic Relief funded project Stand up! for emotional health and wellbeing, that reps are recruited and well trained. Citizen reps volunteer their time, energy and passion to make a difference for others and to the services we receive, and are helping influence change at local, regional and national levels. We wrote about the achievements of mental health reps Rhydian Parry and Jan Rogers on this blog in Powys voices count at the top a couple of years ago.

This training session brought together two groups of individuals – those interested in sitting on the Powys Mental Health Planning & Development Partnership and a second cohort who recently started sitting round the table of the Health & Social Care Regional Partnership Board. Their ages and backgrounds were quite varied, with experience of mental health nursing, the Royal Air Force, specific health diagnoses and carers’ views all brought to the session. The module was based on a training package that was co-produced by mental health team volunteers and Participation Cymru, reflecting on the experiences of people who were interacting and engaging with organisations to shape mental health services.

It isn’t possible to cover the entire session in one blog post, so I’ll highlight a couple of areas and also focus on the points made by the two guest speakers, Sue Hughes – Coordinator Regional Partnership Board at Powys County Council, and Louisa Kerr – Mental Health Partnership Manager at Powys Teaching Health Board.

It was fascinating to hear at the start of the day what people thought about the title of the training, and in particular what “sharing power” meant to them. One of the reps’ responsibilities is to attend meetings with service providers, either locally or nationally (or both) and feedback grassroots opinions about current services. Comments included:

• You will be listened to.
• To be working alongside people as equal partners.
• To be part of the process.
• Using personal knowledge and experience to shape services.
• Sharing with other people what I have learnt.
• Being a team player.

Carla and Carol spoke about the importance of first impressions, being prepared and planning well, and emphasised that reps are representing other people – not just themselves and their own views – when sitting on the boards. “It is key to know who you represent, what is important to that group, and the key messages you want partner organisations to hear”. 

There was an interesting discussion about how it felt to sit around the table as a 'service user'. Whilst acknowledging that they brought a valid experience and were viewed as an equal some felt it put them on the back foot. Language, it was agreed, is extremely important. Some people felt comfortable being described as ‘experts’, whilst others said it was difficult being called ‘a carer’: “I’m a Mum. You’re given a label and boxed somehow. I find that really hard. People have masses more to bring other than being a service user.”

Sue and Louisa both emphasised that when individuals express their views passionately they are as important as anyone around the table. Sometimes we can box things in our own minds when actually we are being valued by everyone else there. “Everybody’s the same. There is no distinction between workers, volunteers and individuals. It’s about people coming together to talk informally. Collectively we are experts."

Carla and Carol went on to highlight the importance of researching partner organisations before attending meetings, and then we looked at “facts and assumptions”. “If I see a policewoman I might feel anxious. Guilty. Worried that she might arrest me. But that is an assumption. The only fact is that she is a policewoman, and I have to leave behind all the assumptions or I’ll be a nervous wreck.”

Sue then gave us a brief background to the Social Services & Wellbeing (Wales) Act which sets out the requirements for the Health & Social Care Regional Partnership Boards. Legally it is a requirement for citizens to sit on the boards. There is a need for people to work differently – for culture change – as the Act is all about the citizen’s voice. "We all need to challenge officers working in services to make sure they have involved citizens, but also to give praise where it is warranted".

Sue also spoke about how to use effective questioning at meetings. “Officers don’t encourage passivity as we won’t then have the opportunity to improve things. If you don’t understand a presentation as it’s not in lay language then it doesn’t comply with the Act. It has to be easily understandable language. You can raise this nicely – but the officers need to know.”

Louisa then provided us with an introduction to the Powys Mental Health Planning and Development Partnership Board which has been meeting for 2 years now. Mental health is governed by different legislation to Health & Social Care, so we look to the Mental Health Measure (Wales) for guidance, but there is much crossover. We learnt more about the various subgroups of the PMHPDP, including Engage to Change (looking at issues raised at the Stand up! for emotional health & wellbeing meetings), Performance, a Mental Health Officers’ Group and S136 Criminal Justice. Louisa recalled the first meeting of the board she attended where citizen reps Kate, Meriel and Rhydian spoke. “It was profound, and changed the dynamic of the meeting. Everyone was listening. That is the most important thing.”

By the afternoon we moved on to sessions on assertiveness, getting the most out of a meeting, and the support that Powys Association of Voluntary Organisations can provide to people. There were some intriguing slides on the nature of power, and specifically the 3 Faces of Power as described by Steven Lukes. And finally there were a few tips on building self-confidence – which can help us all in all areas of our lives. 

All in all a thoroughly interesting day, and we managed to have a fair few laughs too as we introduced ourselves early on in fictional roles as “superheroes, tooth fairies, aliens, scarecrows and witches”! 

Would you be interested in joining these citizen reps to take grass-root views and opinions to local board meetings where service providers can find out what is working and what needs to change? For further information about becoming a citizen rep in Powys, in the field of mental health or health and social care, just get in touch with us by emailing mentalhealth@pavo.org.uk or ringing 01597 822191.

Power and participation Part 2

by Jane Cooke

Last week Jane wrote the first of two blog posts on power and participation. This week we follow up with Part 2.

A long time ago I went on some race equality training. The trainer opened the first day by saying: “You can’t learn from someone who you feel is inferior to you," or words to that effect. That gave me a lot to think about. I wonder if it’s a challenge to lay down now to the many people who make decisions over and about what/who to ‘do to’, and who are also saying, in just about every report one reads, ‘we need to ensure effective participation’.

In our trainings and professional and personal development we don’t give enough time to considering the ‘other’; we gather around ourselves our professional identities, our roles, our pride in our achievements and positions. And, one way and another, we end up thinking about ‘them’ and often how to change and improve ‘them’. What we share, what we can learn from true openness, from open-hearted listening, is rarely in the frame.

In the realm of mental health there is another dimension. Do we question, think about and examine what we feel about the experience of ‘madness’, what we think about people who we categorise as ‘ill’? We are, I believe, still influenced by deep seated ‘folk’ theories about madness. Moral degeneracy had currency not so long ago. If you think that underpinning belief has gone, think about some of the notions that drive the endless, fruitless, search for medical markers, genes for ‘mental illness’. There is often an underpinning assumption that if such things can be found, we will eradicate them, the genes, the carriers, the ‘bad’ foetuses. In my book that’s eugenics. (I’m not anti-abortion by the way or condemning individual decisions about terminations, it’s the broader, unrecognised societal views that I’m saying are not questioned).  Didn’t eugenics die out with the Nazis? No. And it’s not just the domain of the far right, do a search around modern eugenics and you’ll find plenty there. I’m hoping you’ll find it chilling. I do.

We still, as a society, think of those ‘other’ people with characteristics, behaviours, ways of organising thoughts and experiences, as ‘flawed’. Intergenerational shame was (is?) an explanation. Or how about genetic flaws? I heard, about 10 years ago, a senior medical professional declare the view that the explanation for there having been three psychiatric hospitals built around Bridgend was that this was to meet a need generated by a flawed local gene pool. Seriously. As far as I can see there hasn’t been much of a sea change to counter such views.

I hear quite often references to people’s ‘condition’; sometimes there is a reference to someone being a ‘service user’ – a code quite often for ‘difficult’, a way of saying it’s them who is at fault because they are (lowered tone) mentally ill. Not us for having a closed mind, for not being able to manage the discomfort of difference, of challenge to our cherished views.

Many people who use, willingly or otherwise, mental health services have had very difficult life circumstances. Sometimes they, and services, know what these are, sometimes they don’t. Sometimes it is more a case of a slow accretion, many compounding experiences. We know this statistically. We know it anecdotally, we know it empirically. But then there’s a gap in our thinking. We don’t seem to think “How can we adapt ourselves, our views, our ways of working that acknowledges that range of experiences, those various views and understandings of life in order to best share power, to best truly design services with citizens and service users. We say: to join us in our territory you must behave like we do, you must follow our codes (which by the way include the view that you are other, inferior, flawed, suspect). We offer training to ‘them’. Training is very good, personal and professional development is very good; but for all of us. Some people might need to skill up in one area, some in another, whoever they are; everyone brings something of value that others can learn from. There doesn’t, however, seem to be a view that there is a need, let alone a joy, in learning and developing together. There are a bunch of people who are seen as deficient until they know how to play the game. (Then they’ll be seen as a-typical).

Too cynical? Maybe. Let me know some stories to uplift my sometimes jaded optimism.

So, then, to move toward power with? Well first, like that old light bulb, we all need to really want to. And then we need to let go, to feel the discomfort and fear and, together, do it anyway.

Written by Jane Cooke in her capacity as a counsellor and psychotherapist, trainer and facilitator. All views are entirely her own. Email jane.cooke@heartfeltwork.co.uk

Power and participation Part 1

by Jane Cooke

I have been thinking a lot about power recently. Often my trains of thought are prompted by consideration of personal power. Some people assume that they have personal power and that seems to prompt a response in others that confirms this; other people defer, give away their own power. I am not sure that this is good for anyone, but I see a lot of it. Then I wander off into thinking about structural power. Who, as a result of the position that they hold in an organisation, has the power to require or demand certain actions and responses from others?

My experiences over the years have ranged from working with groups and networks of people who use/have used mental health services to working as a counsellor for a year in a prison, to being involved in reviews of NHS mental health trusts. Throughout all of these experiences there has been a theme; that many people, no matter what their position, feel that ‘The Power’ lies elsewhere. Someone else, some other group of people or some structural body, such as a Committee somewhere has ‘power over’ services, chief executives, service users, or the ‘power to’ concede or deny, for example, a place on a joint committee or board, or to close a service or to require that changes to working practices are made, to give or withhold funding or services.

The ‘power to’ sense that individuals and groups of people can take on board themselves seems to be dimmed right now. People working in services who would like to question views and cultures in their services can feel as if they had better not stick their head above the parapet. Organisations can feel limited in their capacity to explore and support challenging ideas (and people!) if they feel that a funder ‘won’t like it’. People who might coalesce around some form of collective action, identity or pressure group can feel that such actions might jeopardise their chances of making progress in the situations where they are involved, or participate.

This feeling that some OTHER has ‘power over’ or ‘power to '(do unto us)’ both stems from and leads to fear – fear of censure, or public criticism, of withdrawal of something valued, of negative comparisons. We live in an age that generates and feeds on fear. Our many forms of communication can spread and heighten fear. Much advertising is based on promoting fear, if you don’t buy this product whether it’s insurance or some sort of ‘germ’ killer, you will be endangering yourself or those you love. Much news coverage is based on fear and a lot of political policies and promotion major on fear; capturing media interest as they do so.

But what if we moved toward a conception of ‘power with’? As far as I know these ideas of power over, power to and power with originated in the peace and non-violent direct action movements. I find them very helpful. So; power with, what would that look and feel like? I wonder if people who are involved as citizens or service users in formal situations, committees and boards, feel as if they are in a ‘power with’ situation? I’d be inclined to imagine that often they don’t. It would be really interesting to hear from those of you in such situations. Do you feel as if you are truly sharing power and if so, what leads to and supports that? In my own experience, which goes back nearly 30 years, people in these situations have been asking for parity in one form or another for at least as long as that: receiving minutes in time, important paperwork circulated in a timely manner, acceptance that agenda items can be added, access to administrative facilities as a right, recognition of the representational time-frame required if people are to be ‘representatives’, meetings at a time and place accessible to all who want to and maybe have been elected to, attend, out of pocket expenses met in cash, broadband and Information Technology (IT) costs met. I would be very interested to hear of examples where there has been ‘up-front’ thinking around these issues before people are invited to the table, before it has been brought up by those ‘reps’, or equally current examples of representatives still finding themselves in these situations.

‘Power with’ requires a shift of mind-set. Power over might appease an ego, I would venture to say that it doesn’t do much good for the soul.

Look out for Part 2 of Jane's piece on Power and participation soon. What are your thoughts? We would like to hear from you. If you have any comments or questions just add them below.

Written by Jane Cooke in her capacity as a counsellor and psychotherapist, trainer and facilitator. All views are entirely her own. Email jane.cooke@heartfeltwork.co.uk

Mental distress - who has the power?

“Power is essential to how we make sense of the experience of distress and when considering how to be helpful as service providers.” Steven Coles, September 2013

In Powys there is an ongoing debate around who has power about even the simplest things when someone is in contact with services because of mental distress. Freda wrote recently about the issue in her post Smoking and snacking? Saving lives or life-saving?

When I was at the Nottingham conference, Psychiatry beyond the current Paradigm, in September, I went to a really interesting workshop with Clinical Psychologist Steven Coles, who spoke about “Power Dynamics: Marginalised Voices, Strengthened Voices”. Some of the language and concepts were quite challenging to me as a layperson, but I’m going to do my best to describe the workshop with links to Steven’s presentation and hand-outs. (Apologies in advance to Steven for any oversimplifications!) The workshop content was, though, very relevant to the on-going debate about the medicalisation of mental distress, and I really want to share some of the discussion and resources. Steven’s Twitter page header sums up the situation succinctly: “A Questioning Clinical Psychologist. Interested in why dominant ideas in mental health persist, despite sustained criticism”.

What the workshop was about
The blurb said: “This workshop will use theory, examples, exercises and debate to discuss the dynamics of power in mental health services. Power is central to understanding emotional distress and suffering, and the responses of mental health services. Power can restrict and be repressive, though all of us need power to live in the world. Within mental health services some voices dominate and others are quietened. The workshop will consider: what power is; how power is used in services; how some viewpoints marginalise alternative perspectives; and consider case material of how quietened voices could become louder.”

Power in everyday life
Steven encouraged us to talk first about how we experience power in our everyday lives. We considered this in pairs, and almost every area of life was relevant…So, for example, who tells us what to do at work, which newspaper to read, what we wear day-to-day….? Who says where we can or cannot park or what speed we drive our cars… if we drive or ride a bike or walk, when we get up in the mornings and what we eat..? Is it us, or someone else?

Looking at different sorts of power
Psychologist David Smail developed a way of looking at the different powers that operate in a person’s life. Some of these powers can be negative, whilst others can be positive. He separated them out into two areas:

Proximal powers – these are the powers that are close to home and which we are more likely to have control over, such as beliefs, memories, feelings, abilities (part of the person) and family, work, friends, housing (part of our environment and social life).

Distal powers – these are powers that are generally out of our control, such as economics, politics, and media/culture.

Mapping power
The feeling of helplessness or lack of control or power can play a big part in our lives whether we are distressed or not. “The flow of power is central to the experience of distress. Whilst at times services might be limited in their ability to alter this flow, mapping aspects of power can help people to clarify and understand their predicament. Furthermore, it is more likely to highlight realistic areas for change than an inward focus.”

Steven showed us a model for mapping power developed by David Smail and Teresa Hagan in 1997. The chart is split into four areas – material resources, home & family life, personal resources and social life. Each area is split again, and individuals can then chart how much power they feel they have in any specific area. Once this is logged, they could look and see if there is anything that can be done to change the balance of power, if this is felt to be a good thing. So… as an example, under home & family life – spouse/partner… An individual may have an abusive partner… so what could be done to change or move away from this relationship where power is wielded in an abusive way by one of the partners?

Power dynamics in mental health services
Then Steven spoke about the way in which power can work in the relationship between a service provider and someone experiencing mental distress. He shared a case study – and we looked at how an individual who is distressed is diagnosed with schizophrenia by services. The young man does not believe he has an illness, but is told by his psychiatrist he needs to take medication for a minimum of two years and possibly the rest of his life. His relationships with his family, and other professionals, were discussed, and we looked at whose viewpoints and whose voices dominated. It was clear that the services’ view of the man’s situation dominated to an incredible degree, to the extent that the man’s control over how he tried to resolve the distress was almost completely removed. Then we looked at how the man’s marginalised voice could be heard and a more democratic discussion take place amongst the professionals and the family.

Power in numbers
People coming together in groups with a common interest can work much more successfully to overcome powers imposed on them. Steven gave several examples, including the Hearing Voices Network and the Critical Psychiatry Network. Since the workshop a local example has sprung to mind - individual patients have come together at Powys Patients’ Council and can report many breakthroughs, the most recent success being changing the policy around mobile phone use on the ward at Bronllys Hospital.

Read Steven’s presentation for further information about the workshop – including his slides on Ideas Way Forward and “Tricky” Issues.

Some of my feelings at the end of Steven’s session:

• That professionals need to look very hard at the power they wield, and why.
• That the situation can be very complex… for example, a) a nurse may wish to support an individual in his aims (for example, not taking medication but seeking counselling) but feel overpowered by the wishes of the higher-ranking psychiatrist; b) the family members may concur with the psychiatrist that the man has an illness and needs medication in order to “recover” as they find it difficult to deal with his unusual behaviours.
• Individuals currently have very little power… much power instead resides with professionals, pharmaceutical companies and the government who make laws which state how people who behave in certain ways should be treated and/or detained against their will. 
• Individuals do, sometimes, have other options if they can access peer support groups and talk to others going through similar experiences. This increases their power, and subsequently their ability to change their lives going forward.

All in all an extremely thought-provoking session, and  I am keen now to read more on the subject. If you have views about power in relation to mental distress, we would really like to hear from you – please make your comments below or email us at pamhinfo@pavo.org.uk

Steven Coles is a Clinical Psychologist working in Adult Mental Health Services in Nottingham. Clinical psychologists aim to reduce psychological distress and to enhance and promote psychological well-being. Steven is co-editor of “Madness Contested: Power and Practice” and a key contributor to the Division of Clinical Psychology’s* position statement: “Classification of behaviour and experience in relation to functional psychiatric diagnoses: Time for a paradigm shift,” (British Psychological Society, 2013). The statement calls for a paradigm shift away from an outdated disease model, towards one which gives much more weight to service user experience and psychosocial approaches.

*The professional organisation for clinical psychologists in the UK.