The KIND (Kingston University Intellectual Disability) Research Group is a big team -there are 12 of us, working on different research projects!  It is also a unique team - we are the only research team in the UK that has salaried researchers with and without a learning disability in salaried academic posts. Last month, Irene Tuffrey-Wijne, who leads the KIND Research Group, brought us together. She asked us to think about how we work. She asked us to make some ground rules

I love conferences. They are my favourite part of my job.  I get to meet new people and tell them about our work. I get to share how our research is helping people with learning disabilities get better care at the end of their lives. But for me, going to a conference is not as simple as just turning up.  There is a lot of planning and support involved to make the this part of my job accessible for me.  In this blog I will tell you about my experience on a recent trip to Birmi

Words matter. Names matter. Your name is part of your identity, it’s your visiting card. Hello, my name is… and what’s yours?  You want to feel that your name fits you like a second skin.  If your name is too much of a mouthful, it will get shortened, so you’d better get in there quick. You want to make sure that the shortening that makes sense to you and, crucially, that you like it. That’s why we changed the name of this project, from the Developing effective service models

Photo: The KIND Research Group The importance of videos to our work One of the first things Irene Tuffrey-Wijne told me when I joined Kingston University was this: when it comes to sharing our research, a video can be just as impactful as a journal article. That may not come as a surprise to anyone familiar with this team’s work. We use video a lot. Videos help us make information about our projects accessible, ensure our colleagues with learning disabilities are visible and

When I returned to our Kingston University office on Monday after a week away on Annual Leave, I was greeted by a washing line.  And no, that’s not the strangest thing we have here – the flying pig still holds that title! Our Washing Line:  The Purpose So, why do we have a washing line in the office? It all comes down to DAPPLE. This is a large, three-year project made up of four parts. Some of these parts have smaller sections.  Some parts are already completed, and others

Richard shares his thoughts on benefits for people with a learning disability.

Jo and Richard enjoying a cuppa. Photo: Kingston University We quite like making cups of tea in our office and we have a bit of a joke in the office about Jo’s tea-making skills. She hasn’t quite got it right yet and is still, after years of being at Kingston University, in training! … or so Richard says!    A cup of tea is good for starting the day off but it’s so much more than that. It’s the strength of the tea and whether that matches what the person wants because each of

Last week, some of our research team went away on a writing retreat in North Yorkshire. Like some of our team, you may be wondering, What is a writing retreat?  This was a chance for us to get away from our desks and focus on writing, planning, and spending time together. Travelling to the retreat! We enjoyed catching up with each other on the train. Photo: Kingston University Arriving We travelled to the retreat by train. Life is busy and we’re not always in the office at t

In The DAPPLE project, we work with a co-production group of people with a learning disability. The group works with us to understand what we are finding out from the research, and how to make it better. Together, we all want to improve the care people with a learning disability receive at the end of their life. One of the first things we needed to do when starting the group was to choose a name and a logo. What should We Call the Group? It was hard to think of a name for the

We are taking a short break from our usual DAPPLE updates this week.  That’s because we’ve got some exciting news to share… The Print & Deliver service is LIVE! Everyone should get the chance to talk about dying and plan for the end of their life.   But it can be hard to know where to start.  Thanks to the new Print and Deliver service funded by the Marie Curie UK Research Impact Fund, printed copies of the Victoria and Stuart Project toolkit are now available to help with

Most of the DAPPLE Team. Photo: Kingston University. Irene says: This is a study I have wanted to do for a very long time. My previous studies have focused on the experiences of people with a learning disability at the end of life; their information and support needs; breaking bad news; staff training and support needs (from palliative care nurses to support workers); end of life care planning.  Conclusions from these studies almost always include the need for everyone to wor

The year was 2006. I was about to embark on what would turn out to be a research-career-defining study. I wanted to spend time with people with a learning disability who had cancer, to try and see the world through their eyes and learn about their needs. I had written my first ever big grant proposal, and Cancer Research UK said yes, good idea, we’ll fund it. I had passed my plan by the national Research Ethics Committee, and they liked it too, especially my easy-read informa

Image: Kingston University London We are delighted to share that the protocol for The DAPPLE Study  has just been published in BMJ Open. You can read the protocol here . So, what does this mean? Essentially, the protocol is the blueprint for DAPPLE: it’s the roadmap that guides us through every step of the research process. The protocol includes key information about: Objectives:  What we’re aiming to achieve Methods:  How we’re conducting the study Procedures:  The specific

One of many reasons I love working in the Learning Disability Research Team at Kingston University is because we are – as Irene Tuffrey-Wijne calls us – “ a think-outside-the-box team”.  And while I have been part of many brilliant moments of creativity in the nine months I have been working here, I’m not sure anything could have prepared me for my day in the office on 17 July, when we filmed a video for our new Print and Deliver Project. Let me tell you all about it! The cas

On May 6th, I had the privilege of attending the  Sawubona National Forum , a powerful gathering dedicated to transforming palliative and end-of-life care through the lens of equity, compassion, and inclusion. The forum, named Sawubona, meaning “I see you”, opened my eyes to the deeply rooted disparities that persist in palliative and end of life care. It became clear that inequity goes far beyond access to services; it’s embedded in how care is communicated, understood, and

Hello everyone!  My name is Mo.  I am a Research Assistant in the Learning Disability Research Team at Kingston University.  I don’t work on The DAPPLE Project. I work on another project called The READY Study, which is about recognising dying in adults with a learning disability. You can find out more about The READY Study here. Some of the researchers working on the READY Study: (L-R Steve Coleman, Irene Tuffrey-Wijne, Mo Hakim, Jane Bernal, Stuart Todd and Fred Inglis). Ph

When we first started setting up the biggest part of the DAPPLE study (listening to people’s stories) we knew there would be hurdles. After all, we’re trying to do something sensitive and important: listen to the stories of people with learning disabilities who are approaching the end of their lives. We want to understand their experiences by spending lots of time with them (through ethnography), and this involves being present at different appointments and places over time.

I am really into how we communicate with each other. So much that I have specialised in analysing communication. My background is in Linguistics (a fancy word for language science), and on my course I had a module on a research method called Conversation Analysis. I instantly fell in love with this method and found my niche within Linguistics. Why am I rambling on about this in a DAPPLE blog? Let me tell you more! Conversation Analysis Let me quickly explain what on earth Con

Freya Tyrer is leading on the “big numbers” part of the DAPPLE project. In this blog post, she tells us what the numbers are saying about how people with learning disabilities experience end-of-life care.   Photo: Freya Tyrer I’m an epidemiologist – which is a fancy way of saying that I use big numbers to understand health conditions.    I have always worked with numbers. Maths was my best subject at school 😊 . I originally did a Computer Science degree, starting out as a co

Are you a DAPPLE stakeholder? You are reading this blog, so the answer is YES! But what is a stakeholder? And why do we want to know more about them – about you, and all our other stakeholders? We have spent a lot of time thinking about this. First of all, what is a stakeholder? This is a confusing jargon word for many of our team members. Nothing to do with holding something like these. Nothing to do with owning a stake in a holiday home either. For our DAPPLE project, a st