We are delighted to announce that we will very soon have the opportunity to speak with guest researcher Professor Irene Tuffrey-Wijne, the world’s first professor of Intellectual Disability and Palliative Care (Kingston University London). We welcome you to join us on Wednesday 5th March at 6pm GMT for this live discussion between Professor Tuffrey-Wijne, and our Chair, Dr Elizabeth Corcoran.

End-of-life concerns are a sensitive subject, presenting realities that can be hard to think through and plan for. Very little research to date has been carried out in this area, especially with regards to people with Down syndrome and other intellectual disabilities. However, there are signs of change through some wonderful initiatives like the Victoria and Stuart Project, a pioneering program investigating how to help people with intellectual disabilities make their own choices at the end of life. The project aims to make sure that people with learning disabilities get the right care and support when they are ill and going to die, working with lots of people to try and get this right. The Victoria and Stuart project is named after two people who inspired the initiative through the example of their own plans for end of life care.

Prof Tuffrey-Wijne leads a team of researchers, including members who have intellectual disabilities. This team has created a toolkit together with people with learning disabilities, families, learning disability support staff, and healthcare professionals, including resources and approaches to support staff with end of life care.

We look forward to hearing much more about this project and how resources like this can help the Down syndrome community in planning for end of life care.

You can watch live at the link below on Wednesday 5th March at 6pm GMT: http://www.facebook.com/DSRFUK/live_videos/

We look forward to joining you then!