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

From 29-31 May, the European Association for Palliative Care (EAPC) held their 19th World Congress in Helsinki in Finland with the theme “Ready for the future”. I was lucky enough to go, so let me tell you a little bit about it. On the 28 May I made my way to Helsinki. Travelling involved a lot of chaos as I locked myself out of my flat with my passport inside and ended up missing my flight. A lot of phone calls to Irene and university travel agents later, I was on a plane an

Richard, Irene, Jonny, Anastasia, Sunny, Mo and Fred saying 'Hello' from The Shard! Photo: The KIND Research Group Richard and the podcast team – Irene, Jonny, Anastasia and Jo - won an award at Kingston University. The award was for being ‘innovative’. We were given some money (£500) to celebrate.   We had to spend the money together, we did. You couldn’t spend it separately. So, we decided to go for an afternoon tea.   First of all, we were going to go to The Ritz and then,

I am used to interviewing people for my Podcast 'Cuppa Tea with Richard' . Recently, it was my turn to be in the hot seat, when I...

Richard and Mel raise their cups of tea and smile after recording an episode of A Cuppa Tea with Richard. Photo: Kingston University London. My name is Richard Keagan-Bull. I am a research assistant with a learning disability, and I work at Kingston University. I host a podcast where I chat to guests over a cuppa tea.   I’m writing this blog to tell you what it was like to record the thirteenth episode of my podcast with Mel Giedroyc. Mel Giedroyc is a comedian, actress, pres

Image courtesy of Books Beyond Words. What leads to real improvement in how people with learning disabilities are supported by health and care services? And how do we know that things are getting better, rather than staying the same (or getting worse)? Is more money the answer I wonder? Targeted training? Stronger leadership? Clearer accountability? Better systems? Authentic co-production? Changing attitudes? Trying to work out which pieces of the puzzle matter most sometimes

Image: Kingston University London Last month, the DAPPLE team held three creative workshops in Yorkshire as part of our Co-production ‘Roadshows’ (so-named by my colleague Richard as an homage to the Radio 1 summer events). A wide range of people came to the workshops: people with a learning disability (including some with profound and multiple learning disabilities), support workers, and other professionals.  Everyone in the room was invited to answer the question: What will

I’ve become aware that our team has become known for our hat game. I know… we post a lot of pictures with people in funny hats, so it’s not surprising. But it’s begun to worry me.  You see, we are so much more than just ‘the hat game’!  We use the hats to  kick-start  our focus groups and our online meetings as they create a lovely vibe. People might have been anxious about joining the session but walking into a room where you see fun hats and wigs on the table… well, people

People with a learning disability need to be involved in research.  Especially when the topic is so important – The DAPPLE Project is about life and death!  I became a researcher because I want people with a learning disability to get good care at the end of their lives.  I also want to challenge – and stop – ignorance about people with a learning disability and what society says we can and can’t do.  (I feel very strongly about this and wrote a rap about it – you can watch m

Back in December 2024, members of the DAPPLE team went to the Seattle Club Conference. The conference was held in London (not Seattle!) on 12-13 December by King’s College London. The Seattle Club Conference is the premier UK-based conference for intellectual and developmental disability research. This year’s conference themes were health inequalities and people with intellectual and developmental disabilities and inclusive research with keynote presentations by Professor And

Image: Kingston University London. Hello, I’m Amanda Cresswell. I have a learning disability and I’ve also had cancer. I’ve been a researcher at the university for 15 years. I’ve worked with Irene on lots of studies, like the Breaking Bad News study , the Talking About Dying study  and the Victoria & Stuart Project . Now we’re doing the DAPPLE project together.   It’s no good doing research if we don’t tell people about what we’ve been doing. So we give talks to lots of profe

A few years ago, my partner and I had to sit our (then 6 and 8 year old) kids down to tell them that Col, my partner, their dad, had throat cancer. We didn’t know if he would live or die but the odds didn’t look good. We were told, ‘You have to have hope’ by the cancer doctor. Well, that didn’t sound good and the stats weren’t so great either.  Our lives had just been thrown into turmoil. All the usual thoughts in those circumstances of, ‘Will he die?’, ‘How will I cope?’ wer