Why Service User Involvement?
This is the the text to a speech given at a recent event introducing a new secure mental health care model (REACH OUT) to key stakeholders. I was asked to speak about why those who use mental health services should be involved in the design, development & continual delivery of the new model.
PART ONE: INTRODUCTION
Good afternoon everybody, my name is Emachi Eneje. I am a service user. I have been a service user with Birmingham Solihull Mental Health Foundation Trust for the past 12 years. 6.5 years as an inpatient spit over two admissions and 5.5 years in the community setting. I have been invited today to talk about service user involvement, specifically how service users can get involved with the development of Reach Out.
Before getting onto that, I’d like to make a brief point that puts service user involvement into context.
You are probably all aware of the conversation about what to call service users. Are we service users, are we patients are we experts by experience, maybe even clients. You have all probably been involved in this kind of conversation. And I am sure it is a conversation that comes up time and again. Well, next time you are involved in such a conversation I’d like you to keep a question in mind. That question is “how genuine is this conversation”. Because at if at the heart of it is an exercise by those in power where they debate among themselves about what to call those they have power over to somehow soothe their conscience then I would say that it is not a particularly useful conversation. But it it is a conversation that is part of a much larger intention to address the substance of the relationship between service users and services that I feel that it is a well intentioned conversation. There are many ways to realise that intention to make service users greater stakeholders in their partnership with services and service user involvement is one of the vehicles that will get us there. In the past 12 years since I have been a service user, service user involvement has progressed. Locally in the Trust and nationally. Particularly noteworthy is the band 8 service user role in Sussex Partnership Trust. I think the job title is ‘service user lead’. I think that this represents tremendous progress. And I should note with mischief that the Trust nor any of it’ core partner yet have such a service user role.
Anyway, I’ll now talk briefly about service user involvement in the context of Reach Out
PART TWO: SERVICE USER INVOLVEMENT & REACH OUT
I have a basic awareness of what Reach Out is, but I would not claim to know what the model fully implies. Nor would I claim to know what Reach Out will look and feel like when fully operational. However, something does strike me about Reach Out. What strike me is the tone, the language and the emphasis of Reach Out. To me Reach Out is a definitive shift from the language of treatment, rehabilitation and reintegration to the language of journey, experience and recovery.
This to me is a significant shift. If talking on the level of journey, experience and recovery, what terms would I use to refer to myself. Well sometimes I’m happy, sometimes sad, other times tired, energetic, motivated, cynical, pessimistic, optimistic, driven, hopeful, etc, but almost always broke. These terms represent me and my real experience. And if you are designing a service that embraces me for who I am, acknowledged all that I have been while supporting me to be all that I can be, you will need a lot of insight into my journey, experience and recovery. I feel that through service user involvement service users are the people best positioned to supply you with that insight.
So, lets for the sake of argument agree that you feel that service users are important to the development of Reach Out, you might be asking yourself “well, what exactly do service users bring”. I hope you see that question as a rhetorical device. Because hopefully all of you in this room are well aware of what value service user bring, but I will take a moment to overview a short list.
PART THREE: WHAT DO SERVICE USERS BRING
There are three things that I’ll mention that service user bring. Knowledge. Motive force. And experience.
First, service users bring knowledge and insight. I feel that service users bring a lot of knowledge and insight into their condition. Knowledge and insight that if engaged with can provide a lot of value for services.
Second, service users bring motive force. Motive force captures quite a lot of things. But this is basically the motive force that drives the recovery journey. Without that motive force there really would not be any meaningful outcomes to measure. The only thing you would be measuring is response to medication. And I hope all of you here acknowledge that medication is only part of the recovery journey.
Third, service users bring experience. All that knowledge, insight, motive force and passion that service users bring does not exist in a void. These things are embedded within the context of experience. And service users bring experience to services. And it is this experience we bring that you engage with in your daily work.
I the things that service users bring — knowledge, motive force & experience — is properly engaged with, then I think a tremendous amount can be gotten by service providers in terms of sense-making what services are supposed to look and feel like.
Again for the sake of argument, lets assume you agree that service users do bring a lot and have a lot to offer. And you feel service users should be involved in developing Reach Out, well what are some of the challenges of doing effective service user involvement?
PART FOUR: CHALLENGES TO SERVICE USER INVOLVEMENT
I feel that there are three broad category of challenges to overcome when thinking about how to do effective service user involvement.
The first of these challenges is the challenge of culture. That is, the question of how well the mind set of an organisation is geared up to make service users feel like valued partners in a relationship. I think that in the past 12 years that I have used services this aspect of culture has come a long way. Though I feel the question of “are we there yet” remains a valid one.
The second challenge is infrastructure. Most organisations, where ever you find them, are structured in a way that decision making comes from the top down. That is just how organisations work. However, for the voice of service users to have impact then mechanisms need to be developed that give impact to voice coming from the ground up. As service user voice is coming from the ground. What are these mechanisms. What do they look like. How do they work. Questions that need to be addressed to overcome this particular challenge.
The third and final challenge is that of engagement. That is basically how does your organisation ensure that every service use with something to say is heard. Especially given that not every service user is convinced that they are valued stakeholder partners in a relationship. How do you demonstrate that service users are just that. An how do you reach deep into the corpus of service users to ensure that as many service user insights as possible are touched.
I feel that resolving these three challenges is crucial to doing effective service user involvement.
I’ll now give several examples of service user involvement & engagement in the wild. These examples of things that I have been involved with recently. I feel they are effective pieces of involvement & engagement. From these I will draw some lessons that could inform the approach of the Trust and it’s core partners when involving service users. These lessons reinforce some of what I have said. But if I am giving example, then I suppose I am not just saying it, because it has been demonstrated in the wild.
PART FIVE: FEW EXAMPLES OF SERVICE USER INVOLVEMENT &LESSONS FROM THEM
The first example I will give is from a recent piece of work by NHS England Service Care Pathways Programme that I was involved with. The piece of work looked at the journeys of black men in secure services. Capturing he journey from the stage of how a person realises they are unwell, through encountering and getting services to long term recovery, then reflecting on how being black effects that journey.
The thing I feel the lesson to be drawn here is the super focus on the journey and the pain taken to capture the detail. Reach Out could take example by involving service user to develop a fine understanding of their journey and how to support it.
The second example is of some service user engagement that I recently encountered through the work of the Recovery & Outcome Group. The Recovery & Outcomes Group if funded by Rethink and engages secure care service users. The Group holds meetings every three months in nine regions across the country. Talks and presentations are given at each meeting by service users or professionals, and sometimes co-produced. There is a lot of topical information and discussion about all things mental health, local and national. I first encounters the Group while recently an inpatient when the West Midlands region meeting was held at Reaside. I enjoyed that meeting and since have continued contact and involvement with the Group in various ways. I think at a more recent West Midlands meeting held at St. Andrews Kay gave a brief talk about Reach Out to the assembled audience. So it is a good forum to engaged service users on the latest developments.
I feel the lessons to be drawn from the Recovery & Outcomes Group are two fold. Lessons of infrastructure and engagement. In terms of infrastructure if the national network of regional events and how they work together can be replicated and shrunk to fit within the the Reach Out area then I feel that would be a good thing for the development of Reach Out going forward. In terms of the lessons that can be drawn from engagement, I think that the Recovery & Outcomes Group have good penetration into the service user corpus, despite the many challenges they face engaging secure service users. In terms of that engagement and what is generated from the regional meetings, the Group strike a good balance between the breadth of issues covered and focused directed purposefulness.
I hope that the Trust & it’s core partners can take come of these lessons on board as it develops it’s strategy for engaging service users. I’ll now wrap up this part of the presentation with one more set of considerations. I’d like to ask the Trust & it’s core partners to consider five pledges that they should make to service users when engaging them and getting them involved in various ways.
PART SIX: FIVE PLEDGES TO SERVICE USERS
The first pledge is hearing. That is a pledge that every service user with something to say will be given hearing, and that hearing should be given at the most appropriate level.
The second pledge is representation. That there should be service user representation at every appropriate forum.
The third pledge is feedback. That for every piece of involvement there should be a piece of feedback, if not dialogue and ongoing conversation.
The fourth pledge is stakeholder-ship. The Trust and it’s core partners should take pains to ensure that every service user feels like a valued stakeholder in a relationship with services.
The fifth and final pledge is action. If you ask us to give our time, attention, expertise, passion and of ourselves then we want to see action, we want to see progress, we want to see change.
Thank you for listening.
