Nothing about us without us: my time with the RCN Foundation and journey as a Co-Researcher in Learning Disability Nursing so far!
How lived experience, partnership and inclusive research can help shape the future of learning disability nursing
For those who don’t know me, my name is Aaron Hume. I live in Livingston, Scotland, just outside Edinburgh. I am a disabled rights campaigner and co-researcher. Over the past few years, I have been fortunate enough to contribute to research projects and work alongside researchers, professionals and people with lived experience to help make sure voices from our communities are heard.
This blog is about my journey as a co-researcher in learning disability nursing, how a single conversation through The Assembly led to a new connection and opportunity, and why I believe people with lived experience must be involved as equal partners in shaping the future of learning disability nursing.
Disability Pride and why it matters
July is Disability Pride Month, and this is a real chance to celebrate disabled people, our identities and the contributions we make to society.
Around one in four people in the UK are disabled. Disability is not something to be ashamed of; it is simply a fact of life. People are people, and everyone deserves to be valued and included.
The Disability Pride movement began in the United States in 1990 as the passing of the Americans with Disabilities Act (ADA) happen, which helped strengthen protections for disabled people’s rights. In the UK, Disability Pride has been celebrated since 2015 and continues to grow.
Within the UK third sector, we often use the social model of disability. This recognises that people are not disabled only by their impairments, but by the barriers created by society. These barriers can include inaccessible buildings, negative attitudes, assumptions about disabled people’s quality of life, and/or a lack of understanding and support.
For me, Disability Pride is about celebrating who we are, recognising the progress that has been made, and continuing to challenge the barriers that still exist out there. It also must be a strong reminder that disabled people belong in every part of society.
Our voices matter.
Our experiences matter.
Our contributions matter.
My first connection with the RCN Foundation
I first became involved with the RCN Foundation through an online meeting with a group I am part of called The Assembly, which is a weekly accessible politics group with a shared ambition of one day creating the world’s first learning disability and/or autistic people’s parliament.
The group brings together people with lived experience, supporters and professionals to discuss issues that matter to our communities. We regularly invite speakers from government, health services, universities, research organisations and charities to share their work and, importantly, listen to our experiences.
We meet nationally as a one big group every Friday morning from 10am to 12pm on Zoom and everyone is welcome to come along. We also have a Facebook page where you can find more information about us.
This is where I met Sarah from the RCN Foundation. Sarah asked to join one of our meetings to hear about our experiences of nursing, access to learning disability nursing and the importance of relationships between people with learning disabilities, autistic people and healthcare professionals.
Some of the key issues discussed were:
- The shortage of learning disability nurses
- The postcode lottery, where people’s experiences of services can depend on where they live
- The impact of nursing shortages on waiting times, appointments and support
- A lack of learning disability and autism training across services
Although this meeting happened a couple of years ago, many of these challenges are still very relevant today.
The funding bid that almost happened
A few months later, I became part of a team preparing a research funding application for an open funding call from the RCN Foundation.
I was chosen to attend the interview with the panel because the team knew me, trusted me, and let’s be honest, they knew I could talk for Scotland! If talking was an Olympic sport, I would definitely be aiming for gold… which is pretty rare for someone who cannot physically talk in the traditional way.
Unfortunately, despite giving it our best effort, we narrowly missed out on the funding The panel liked our proposal, but we were told we needed stronger partnerships across the UK.
Of course, it was disappointing, but I have always believed feedback is valuable. If someone tells me, “No, or almost, but not quite,” my response is: “What do we need to do to make it a yes next time? So I phoned the Foundation off my own back and asked them to talk over the panel feedback in detail because I wanted to learn and improve.
Then, a couple of months later, I received an email from Sarah that completely surprised me – she invited me to London to join a panel at the RCN Foundation’s Annual Lecture on learning disability nursing. I would be sharing my lived experience and talking about the difference learning disability nurses can make.
I honestly had to read the email twice.
Me? Speaking on a Q&A panel in London?
Once it sank in, there was only one answer: absolutely yes!
The first person I told after my mum was my colleague who had led the original funding application before turning to social media about it. I couldn’t keep quiet about it!
It was not every day that someone you had only met a few times invited you to London to speak on a question-and-answer panel.
It was a pretty special moment.
From London to the University of Salford research project
In 2023, the RCN Foundation launched a £300,000 programme of grant funding over several years, to strengthen the evidence behind learning disability nursing and help tackle health inequalities.
This was about much more than a trip to London. It was about addressing important challenges facing learning disability nursing, including fewer people choosing it as a career, and the barriers that people with learning disabilities continue to experience when accessing support.
I was invited because of my campaigning work, my experiences and the knowledge I bring. Yes, having a learning disability and receiving help from a learning disability nurse in the past are an important part of my story, but they are not the only things I have to offer.
The Foundation wanted my voice because of what I could contribute. Yes, I can talk for Scotland, as people often remind me, but more importantly, I care deeply about making real change happen. It was a huge honour to share my experiences, meet people who were passionate about improving services and be part of those important conversations.
At the event, I arrived early because my dad always says: “it’s better to be early than rushing in at the last minute.” I was planning to chill out in the hotel room for the extra 20 minutes before making a move!
So, about 40 minutes before it started, I found myself sitting in the RCN headquarters, which is very grand – if you have a chance to visit, I would recommend! Here is where I met Vanessa, a professor at the University of Salford. She is an adult nurse by background and has spent many years researching different areas, including learning disability nursing.
We had a great conversation, and she told me that she had successfully received funding from the same funding call that our team had applied for. Naturally, I gave her a little bit of my famous “sob story”, telling her she had taken the funding and job right from me!
I asked Vanessa to keep me in mind if anything came up. A couple of weeks later, she contacted me and invited me to join a new funding application with the University of Salford. The project would explore why Learning Disability Nurses are giving up their registration with the Nursing Midwifery Council, and I would contribute as an expert by experience advisor and co-researcher.
This bid ended up being successful and was the beginning of my journey as an expert by experience advisor specific to learning disability nursing, giving me another opportunity to contribute as a co-researcher in learning disability research.
What inclusive research really looks like
As part of this project, I worked closely with Dan, who is a learning disability nurse and social work lecturer.
When I first heard the words “social work lecturer, I thought “uh oh… this could be interesting!” I have a bad habit of winding social workers up saying they are the worst of the worst profession, but I don’t always mean it – it’s banter and meant in good fun. Thankfully, Dan understood my humour and we ended up working really well together – although I still have not forgiven him for the 8am online meetings as we worked away on the data analysis stage!
My role in this project was not a token gesture or a box-ticking exercise. I was a genuine member of the research team from beginning to end.
Dan and I created the interview questions from the project aims and co-led every interview and focus group with people who had experience of using learning disability nursing services, as well as family members and carers. Prior to this, Vanessa, who was the project lead, provided training on undertaking focus groups and understanding qualitative research which helped me refine my technique of questioning (without being too nosy!).
I helped organise sessions, welcome participants and create an environment where people felt comfortable and at ease sharing their experiences.
During the interviews, I listened carefully, asked follow-up questions to help me understand their views better, and helped make sure people had the opportunity to fully explain what mattered most to them without rushing them. This was important because research should not just be about collecting information from people, it should also be about truly listening to people. People with lived experience bring knowledge and understanding that can make research stronger.
The work was not always easy - some conversations were emotional, and analysing the information we gathered took time, patience and lots of discussion between me and Dan.
However, throughout the project, I was treated as an equal member of the team.
My ideas were listened to.
My opinions mattered.
I was trusted with meaningful responsibilities.
I co-authored the two papers that were written based off the research, which is a testament to my commitment to the wider project.
That is what genuine co-production should look like – it is not about including someone with lived experience just to tick a box., it is about recognising that lived experience is a valuable form of expertise.
Looking ahead
Unfortunately, I cannot share too much about the research findings yet as we have written two research papers that are currently under review. You will just have to watch this space!
What I can say is that this project has been an incredible experience and I have learnt so much – not just about research, but about teamwork on a project with tight deadlines, listening to people’s experiences (and when to shut up talking!), and the importance of making sure lived experience is included from the beginning.
I also want to say a huge thank you to everyone who took part in the interviews and focus groups. People were incredibly generous with their time and open about sharing their experiences. Sometimes, perhaps a little too open! I am still recovering from the participant who guessed my age as 40. For the record, I was only 22 at the time, so that one still hurts!
On a serious note, being trusted as an equal member of the research team has meant a great deal to me. I was not there simply because I have a learning disability. I was there because my knowledge, skills and experiences added value to the project – just like every other member of the team.
Nothing about us without us
I hope this project can help show that people with learning and physical disabilities are not only patients or people who receive service. We are researchers, colleagues, campaigners, educators, leaders and partners too!
When people with lived experience are given the opportunity to contribute as equals, everyone benefits. Research becomes stronger because it includes a wider range of knowledge, experiences and perspectives.
Lived experience should not be something added at the end of a project. It should be valued from the start. People who use services often understand what works, what does not work and what needs to change.
For me, this project showed what real inclusion looks like.
It was not about having a person with lived experience involved just to say they had included someone. It was about creating a team where everyone’s knowledge was respected, everyone’s contribution mattered and everyone had a meaningful role.
That is the future I want to see – not just in research, but across health services and wider society.
A final message for Disability Pride Month
As I finish this blog, I want to wish everyone a very happy Disability Pride Month.
Whether you are celebrating your own identity, supporting someone else, or taking the opportunity to learn more, I hope this month reminds us of all of something important: disabled people belong in every part of society.
I am proud of who I am, proud of the work I do and proud to be part of a movement that continues to challenge barriers and create change.
I am also incredibly proud to have been part of research that places people with lived experience at the heart of learning disability nursing.
There is still work to do. There are still many barriers to remove. But by working together with people with lived experience, health and social care professionals, researchers, and communities, as a team we can continue building a more inclusive future.
Finally, thank you to everyone who has supported me along the way.
From researchers and colleagues, to disabled people and advocates who continue to share their experiences and push for change, your work matters a lot so keep going!
Together, we can make sure learning disability nursing is valued, strengthened and shaped by the people it exists to support.
Happy Disability Pride Month.
Love Aaron X