Experts by experience themselves presented their stories, always impressive, sometimes emotional. How they slowly regained their own potential. Their successful initiatives. And the growing conviction that their input ‘works’ – differently and often better than regular professional care that is often felt to be detached and impersonal. But their primary focus is on building equal relationships for collaboration with care and service providers, wherever people are in danger of breaking down, whether due to poverty and debts, overburdening by informal care, problematic parenting issues, psychiatric problems or functional illiteracy.
The key question posed time and again during the conference is ‘what is the X-factor in experiential expertise’? The answers vary: ‘Your shared life experience makes it easy to connect’, says one person. ‘There is a much more equal relationship, because you don’t need to bridge the power gap’, states another. And a third says: ‘During my recovery the expert by experience knew how to look beyond my mask, because she recognized herself in me.’
‘It’s obvious that experts by experience have their unique contribution as a third source of knowledge’, says Toon Walravens who works for Mental Health Care in Eindhoven as a professional expert by experience. ‘As an expert by experience you can use parts of your own story to look at opportunities and possibilities of the other person. That is your added value!’. He emphasizes that the use of experts by experience within organizations and teams depends to a large extent on a clear and shared vision. ‘Basically it’s about jointly contributing to meaningful relationships. Because this is the only way to gain trust – and that is a condition for recovery’.’.
Mental Health Care Eindhoven sees experiential expertise as an occupation. So the experts by experience are hired, receive a contract, a salary and a competences profile that they will simply have to comply with. But will they still be able to voice their critical comments when necessary? Or are they automatically becoming part of the existing system? Walravens acknowledges this risk. ‘You need to create your own space while surrounded by professionals who can be pretty dominant. If you don’t manage to do that, you will get caught and drawn in with the rest of the team. That’s why I am always in favour of having at least two experts by experience per team.’
Talking with instead of about
The Ministry of Health, Welfare and Sport does not enlist experts by experience, but it does consult them to find out about the impact of policy decisions in practice. Erik Gerritsen, Secretary-General at the Ministry, outlines how his ministry makes use of experiences of vulnerable citizens with health problems or affected by other people’s health problems. They are invited to the ministry on a weekly basis to tell their stories. Sometimes they also join in meetings. ‘Because ‘talking with’ adds a different dynamics to the conversations than ‘talking about’, says Gerritsen. ‘And it helps me to stay focused on what is really the issue.’
Stigmatising ‘them and us’
Conference participants are invited to contribute key issues for the Ministry. Equality and recognition are words that stand out. Wilma Boevink, researcher and expert by experience, follows up on this and asks the senior official why the Ministry will not simply contract experts by experience. The audience applauds her question. ‘We still hesitate to make use of our own experiences’, says Gerritsen. ’We all have our own experiences, for instance with parents suffering dementia. But many colleagues leave these experiences at the doorstep when entering our building, mainly because they are afraid of conflicts of interests.’ Somebody points out that this leads to thinking in stigmatising ‘us – them’ oppositions. ‘Give me your good ideas to solve it’, the Secretary-General says, ‘and we’ll facilitate them!’
‘We started writing our own history. It has made us into self-confident discussion partners in care’, Wilma Boevink states in her presentation. ‘It is high time, because there is a staggering gap between the care on offer and what we really need.’ Face-to-face contacts between clients and experts by expertise, however valuable, are not enough to close the gap. What is needed is ‘fully-fledged co-creation, she emphasizes. ‘So let us go to work as full partners to make professionals in mental health care understand who we really are! And let’s build helping networks with significant others and professionals in care and welfare, networks that can really support us when sometimes we are not doing too well.’
Need for more professionalization
Next steps will include further professionalization of experts by experience and for a legitimate professional association, according to Boevink. ‘A professional competencies profile has been written, and a standardised national training programme and professional register are on their way, and we are exploring quality criteria.’
‘With each next step we take we will have to consider what it will deliver and what it will cost. Will there be enough space to critically take apart a care system that is primarily aimed at its own continuation? And how do we continue to ensure that experts by experience without a certificate will be heard? I definitely will be fighting for that!’, Boevink promises.
Lecturer and expert by experience Alie Weerman also promotes further professionalization of experts by experience. ‘Experiential expertise is becoming a strong and clear brand. The advantage is that it becomes a recognisable discipline – and with that a power to be reckoned with in care and welfare. But it also becomes a means to safeguard quality. However, as soon as you turn the expert by experience into someone separate, it will encourage the ‘us-them thinking’ that we want to get rid of.’
Three key tasks
Three key tasks have been outlined for experts by experience: supporting and guiding individual recovery processes; contributing to recovery-supportive care; and impacting on the empowerment in social processes. The emphasis in the experts by experience training offer is very much on the first key task. In order to also pay sufficient attention to the other two, Weerman proposes to put all secondary and higher vocational education for experts by experience under the umbrella of social work education – but with a clearly distinctive training pathway. ‘It will allow the care and welfare domain to be injected with experiential expertise and initiate a culture change throughout the whole field.’
‘Experiential expertise is available at more levels and in more places than we often realise: with professionals, experts by experience, professionals with experiences, clients, families and citizens. This should be allowed to start flowing to encourage acceptance of imperfection. For this we need professionalization and de-professionalization – with space for the non-vocational input of clients, critically involved citizens and experiential workers that take initiatives beyond existing frameworks.’
Wanted: professionals without egos
After two rounds of workshops, the final speaker presents a philosophical reflection based on the publication Postpsychiatry by Patrick Bracken and Philip Thomas. Now that the boundaries between sick, mad and healthy, which are based on norms, are becoming blurred, the speaker pleads in favour of a different way of thinking and working that is also relevant for experiential experts. Less aimed at diagnosis, but more at the question what is needed. No longer focused on limits of self-care, but on the question ‘what do you and your network need to get through this period?’ And no longer with professionals and experts in the lead, but primarily with support from one’s own network and ‘professionals without egos’.
This post-modern thinking allows the boundary between the contribution of professionals and professional experts by experience to blur. ‘I think we need only experts by experience; professionals and experts by experience who are able to admit to their personal experiences and are willing to deal with a complex reality that is not easily adjustable. It will not make us rich. But it is the most important work in the world!’.
* The Conference ‘The work of experiential experts’ took place on 14 June 2017 and was co-organised by Movisie. Wybo Vons wrote the Dutch version of the report.