Promoting Excellence In Psychological Health & Wellbeing

Facilitators & Barriers to Expert by Experience Involvement - Alison Bryant, NW PPN EBE Representation Steering Group Member

12 Oct 22

*To listen to the blog,   audio click here. (14.81 MB)

Hi everyone, its Alison welcoming you to the October PPN NW EbE Steering Group blog.

On the 20th of October, we are excited to share we are taking part in the IAPT Conference, to discuss what is required to create an EbE group. My colleague Hilary is talking about the practical and logistical aspects of setting up a group and I am looking, from my EbE perspective, at the facilitators and barriers that help or hinder involvement. So, the content of this month’s blog is to share my perspective on this.

I guess to start I have to be honest, in that five years ago my position was a very different one to that I hold today. Really, it’s that perspective looking back over my shoulder that gives me confidence to share my experience and journey from service user to becoming an Expert by Experience. So what are the facilitators and barriers to EbE engagement, the positives and negatives, which can inform you in your work with EBEs?

Five years ago I didn’t leave the house. I had no wish to engage with others and was in the midst of a difficult-to-manage crisis in my physical and mental health. My knowledge of public involvement was scant to say the least! I’d seen a few news articles and bits and bobs in documentaries, but that was it. I was not an expert then in anything but my own suffering and had no idea what an EbE was, or did, and assumed you needed an ‘ology’ in something to become one.

Engaging in Compassion Focused Therapy opened a door to a new way of being for me. I was able to take tentative steps towards life once more. It was a conversation about EbE’s during that time that gave me my lightbulb moment. Could I really use my experience to benefit services, training, and the workforce for better outcomes for other service users? The reply I had back was a resounding ‘yes!’ and so that is how my journey began and why being an EbE for me is an integral part of my identity.

For all of you working in IAPT (or any other service), whether you have fully up-to-speed service user groups or are making the first steps to engage communities and EbEs to support you in training, I guess I just want to say that finding service users to become your EbEs does not have to be a barrier, even when those service users may know nothing about what being an EbE is. Finding experienced service users, EbEs or public advisers who will enrich your group with their mix of knowledge and skills and experience, may be easier to achieve because they are already there with established networks. But vitally, you need to embrace and encourage potentially hard-to-reach groups, to widen participation through diversity by seeking out community groups, charities and other services, to explain how welcome they will be and how your service will benefit through sharing their voice.

In establishing contact it’s the simple things that make a big difference- a good poster or advertisement informing service users about what you need and explaining what an EbE is would be a great start. Clearly put on your contact details. Tell potential participants how their input will be renumerated and that they are valued for their unique perspective. Send that information to the community groups/ charities that you have identified and follow up that initial step. Assign a member of your team to be the point of contact to talk to service users to allay their fears, discuss their ideas and how they can contribute. Making these connections and building relationships at the outset really makes such a difference to establishing your EbE network.

Involvement as an EbE is transformative and, as mind-boggling as it sounds from the perspective of seeing myself five years ago, I have been given a sense of purpose and a way to reframe the negative experiences that have affected me to inform, influence and enable change for services and service users for better outcomes. This aspect of personal transformation and growth through involvement is one of many benefits that EbEs will find as a result of working with you. 

Of course, considering facilitators and barriers there are so many practical things to consider – the funding, processes to facilitate payment, data security, but one of the most important things of all is  for you just to listen to your EbEs!

Respecting EbE boundaries, what they want to share and what makes them uncomfortable. All of us are different and have different tolerances, and may need adjustments to engage in involvement.

Is your facility or space welcoming? EbEs may be very nervous or anxious at the beginning of their EbE journey. What can you do to adapt that space? Even just saying ‘Tea and biscuits will be waiting for you’ after a rainy -day bus journey to attend can be enough to facilitate participation.

Is funding available to pay on the day the costs for bus or train fares? Be mindful that if this gets mixed up it can be anxiety-provoking, particularly for benefits claimants where this may be perceived as income rather than reimbursement for an expense incurred. Do you have a clear transparent payment process? Consider if your EbE, for example, may be homeless and has no bank account. How can you help them to attend and be certain of reimbursement to show their value to you and your service?

Things that may seem small – the timings of any sessions for a mum dropping or collecting children from school who would love to be involved and has so much to share, or for someone managing a physical or mental health condition to manage their journey at a quieter time of day to avoid a crowded vehicle. Have you provided bus routes, details of the closest stop and a map?  Have you given contact details for an EbE to reach out for reassurance or to advise you of a delay? Are your materials accessible for anyone with learning difficulties, visual impairment or when English is not their first language?

All this can really assist in reducing anxiety on the path to involvement.

Part of building and growing your EbE network and group can also involve upskilling your EbEs by offering planning meetings before sessions, training, mentorship and feedback. Certainly at the outset, when confidence is less, being a ’newbie’ a buddy system can be useful to offer support. The key thing for all EbEs to facilitate meaningful engagement is to ensure co-production is at the heart of what you set out to do.

I know there is a lot to consider here but EbE groups will grow. Service users are empowered from the point of involvement and this brings energy and enthusiasm that is infectious and will enhance your work together.

When the opportunity to participate and share is truly grounded in a relationship of co-production, where everyone’s voice is treated as equally valid rather than the tick box -‘We need an EbE here’- the results are amazing! I know in reality none of you would just tick that box but up until the recent past this sadly was often the case.

Together, your service and EbE colleagues with structure and support in place to facilitate engagement can work in partnership to achieve better outcomes for service users and improved service performance with a workforce shaped by EbE inclusion and their lived experience.

If there is any support we can give you about EbE involvement, please reach out to us at the PPN NW EbE Steering Group as we would love to hear from you, This email address is being protected from spambots. You need JavaScript enabled to view it. 

We are really looking forward to contributing to the Joint North IAPT Leadership & Innovation Forum and then in November to give you a taster, in the blog I will be including the perspective of the PPN NW EbE Steering Group on what being involved in PPN Week 2022 has meant to them. Until then, take care of yourselves and please register for PPN week 2022!