Written by Meg Wilding, Best Practice Administrator and the MacIntyre project lead on The Victoria & Stuart Project.

What is The Victoria & Stuart Project?

The Victoria and Stuart Project is co-designing a toolkit and resources for end-of-life care planning with people with learning disabilities within social care settings - named after two of the people who inspired the research project, Victoria Willson (1970 –2013) and Stuart Hasler (1978 –2020) who both had learning disabilities.

Each were able, with the support of their families, friends and a team of professionals and services, to live fully until the end of their lives and die in the way they wanted – their own way. You can hear about their stories in this video.

The Victoria and Stuart Project is about finding the best ways to help people with learning disabilities plan for the end of their life as, with approximately 660,000 of whom living in residential care or supported living settings when they reach the end of their lives.

MacIntyre’s involvement

Following the work delivery of our three-year (2016 - 2019) Department of Health funded Dementia Project it became apparent that many people with a learning disability are not spoken to when it comes to end of life care, dying and making decisions regarding their death. It was also clear that staff did not feel completely confident with discussing death, dying and end of life care with the people who draw on their support and, training around how to begin these conversations was becoming a topic regularly requested.

MacIntyre sought out specialist training, in advance care planning and end of life care for those living with a learning disability and/or autism, and from this a relationship developed with the PCPLD Network and Professor Irene Tuffrey-Wijne, who is leading on the project.

Irene Tuffrey-Wijne also collaborated with us on the creation of the Dying to Talk Project -which allows MacIntyre to help the people who draw on our support, their families, friends and staff understand and feel supported around talking about death and dying.

MacIntyre is a co-applicant within The Victoria & Stuart Project and has been involved throughout, from the application process at the very beginning to, organising and participating in focus and All Together groups, and trailing the toolkit throughout the organisation.

My role on the project

I lead on The Victoria & Stuart Project at MacIntyre with the support of Nicola Payne, Best Practice Health and Families Manager. My role is to engage with people who draw on our support, their families, friends, circle of support and MacIntyre staff. I will be supporting staff that have participated in focus and All Together groups, and empowering people who draw on our support to having a choice when it comes to end of life care and death and dying discussions. I will also be training staff to use the toolkit once it is ready to trial within MacIntyre.

What I have been involved in so far

I started my role in August, and my first task within the project was to recruit people to participate in focus groups (this was joint with another organisation called Dimensions) including;

• People who draw on our support

• Families of people who we support at MacIntyre

• Staff - including support staff and frontline managers

We facilitated seven successful focus groups across August – November, which collected rich data for the research team at Kingston University, which will in turn help to decide what route the project goes down when it comes to co-designing the toolkit.

A highlight of mine working on the project so far, was participating in the face-to-face focus groups with people who draw on our support at MacIntyre. To hear and learn about the thoughts and feelings of people with a learning disability about such a difficult and sensitive subject was so inspiring, and working with a researcher with a learning disability and experiencing their mindfulness practice was fantastic!

I have also been involved in supporting the Dying to Talk Project, supporting people who draw on our support, with lived experience to be involved and have their voices, opinions, worries and concerns heard.

Next steps

Next steps for the project is the beginning of the All Together groups in January, which will be facilitated with true co-production values, something I am very passionate about, including people who draw on our support, families and support staff. Purpose of the All Together groups it to create the training and the toolkit that will then be trailed by staff teams at MacIntyre and Dimensions.

I am really excited and passionate about The Victoria and Stuart Project and the objectives and outcomes that we will achieve together, and I cannot wait to get started with All Together Groups this year!

g on the project so far, was participating in the face-to-face focus groups with people who drw on our support at MacIntyre. To hear and learn about the thoughts and feelings of people with a learning disability about such a difficult and sensitive subject was so inspiring, and working with a researcher with a learning disability and experiencing their mindfulness prac“A highlight of mine working on the project so far, was participating in the face-to-face focus groups with people who draw on our support at MacIntyre. To hear and learn about the thoughts and feelings of people with a learning disability about such a difficult and sensitive subject was so inspiring, and working with a researcher with a learning disability and experiencing their mindfulness practice was fantastic!” – Meg Wilding, Victoria & Stuart Project Lead & Best Practice Administratortice was fantastic!” – Meg Wilding, Victoria & Stuart Project Lead & Best Practice Administrator

“A highlight of mine working on the project so far, was participating in the face-to-face focus groups with people who draw on our support at MacIntyre. To hear and learn about the ghts and feelings of people with a learning disability about such a difficult and sensitive subject was so inspiring, and working with a researcher with a learning disability and experiencing their mindfulness practice was fantastic!” – Meg Wilding, Victoria & Stuart Project Lead & Best Practice Administrat