Working on the Culture of Care Programme
Mental health researcher, Emma Nielson shares their unique perspective of working on the Culture of Care Programme, NHS England’s Quality Transformation Programme as a Lived Experience Advisor.
I am not good at introducing myself. I don’t like the ‘Tell us something interesting about yourself’ ice breaker; I am never quite sure what to say. Do I give you my job title? But what does that really tell you about me and who I am as a person? Do I tell you about my cat? I do love my cat but is that introducing her rather than me? Maybe a hobby? An interest? My autism diagnosis?
I have the same at work too. I am a mental health researcher by background. I am autistic. I have spent more time than I would have liked to in mental health services. Usually, I have to choose which of those roles or labels I disclose at any one time and which is most relevant or appropriate to mention. However, lately, I have had the opportunity to work in an environment in which I am encouraged and empowered to show up as I am, wearing any of the metaphorical ‘hats’ that I want to. This includes both my research expertise ‘hat’ and my lived experience ‘hat’. And I get to be around other fantastic people doing the same thing!
“I value working in a space where I don’t have to hide any part of myself that I do not want to.”
I currently work on the Culture of Care Programme. This is part of NHS England’s Quality Transformation Programme and is all about aiming to ‘improve the culture of inpatient mental health, learning disability and autism wards for patients and staff so that they are safe, therapeutic and equitable places to be cared for, and fulfilling places to work’ [1]. There are lots of different focus areas within the programme and across everything, the work is aiming to be trauma-informed, autism-informed and culturally competent. Neurodiverse Connection is a delivery partner of the project and they are supporting working towards these aims [2].
I work on the part of the programme focused on patient safety and personalised approaches to understanding, working with and managing risk. I can give reflections based on my research expertise and also from a lived experience perspective and I am able to use all of that to help facilitate discussions and sometimes, gently challenge. I value working in a space where I don’t have to hide any part of myself that I do not want to. I also love that I work with some fantastic colleagues, many of whom also give lived experience perspectives.
The mental health staff who attend our sessions reliably comment on the value of hearing the experiences of our Lived Experience Advisors and Collaborators. Their contributions are important, impactful and honest in the best possible way. Their insights are sometimes delivered with impressive humour and they beautifully convey what so many of us experience. It is powerful to hear about the interactions and adjustments that have made a positive impact in someone’s life and their ability to access the healthcare that they need to. It is also powerful, but difficult, to hear about the restrictions, the misunderstandings, the barriers and the poor practice that has so often hindered people on their journeys and which continues to haunt them years later.
“I want to help change systems – maybe the world - but I also want to change things for me.”
I find it poignant to witness the extent to which these messages seem to be heard, in the context of being delivered by a Lived Experience Advisor. How many times have we, as autistic service users, said these same things but not been heard? I have so much admiration for my colleagues who are able to stand up again and again on a national stage, but why do we need a label and role that is not ‘patient’ in order to be heard? As a patient, when I try to advocate for myself in healthcare settings, I often experience not being listened to, not being heard, being dismissed as ‘difficult’ and treated as if I’m being a trouble maker or ‘a princess’. Increasingly, I am finding myself wondering how we help the shift from only being heard within the framework of this NHS England programme, to being heard to in our day-to-day lives. I want lived experience perspectives to be welcomed on every level. I want to help change systems – maybe the world - but I also want to change things for me.
Currently I don’t have the answers, but as I move forwards in my space of multiple metaphorical ‘hats’, I already have some important reflections to take forwards in my life, in work and in advocacy. I wonder how do we create more spaces where we can be authentic and respected as ourselves, while owning as many labels as we like? How do we create spaces where we are heard as default, because our perspectives matter and not because of our job titles? How do we have more conversations person to person and how do we best support ourselves and each other as lived experience colleagues within all of this?
I do not like introducing myself. I think maybe that is because I don’t want to have to pick and choose what is the most important part of me to present. I would prefer you to get to know me as a whole person and I want to be respected regardless of any title or role.
References
[1] https://www.rcpsych.ac.uk/improving-care/nccmh/culture-of-care-programme
Neurodiverse Connection is delighted to be a delivery partner for NHS England's Culture of Care Programme.
Find out more about our work on the programme here.
