Written by Faye Gardiner, the Dimensions project lead on The Victoria & Stuart Project.
It's hard to believe it's already been one month since I took on the role of Project Lead for Dimensions’ involvement in The Victoria and Stuart project! As I reflect back on this first month, I'm feeling a mixture of emotions - excited, nervous and optimistic about the road ahead.
To give you some background, I had felt compelled to apply for this role after reading through The Victoria and Stuart website, listening to the stories which inspired the project, and realising how much disparity there was in end-of-life care planning for people with learning disabilities. From my own personal experience, my grandad was supported with his end-of-life care planning and chose to spend time at home, instead of in the hospital.
My grandad’s decision was driven by his understanding of the options on offer and ability to communicate them effectively. Being able to go home for his end-of-life care brought my grandad a great amount of peace, dignity and comfort, so why shouldn’t people with learning disabilities have the same right to choose?
Through this, I realised I wanted to be involved in a project where people with learning disabilities could get the right support to communicate their own wishes. I recently saw a quote online which said, ‘When death is inevitable, the way of dying is important’. Which I thought concisely summarised how significant and deeply personal our choices surrounding dying are, and that everyone should have a right to voice this, just like my grandad had.
Before I stepped into the Project Lead role for Dimensions, I'll admit I felt nervous, as being involved in research to improve end-of-life care planning comes with great responsibility. My nerves were short lived, as within the first week, despite the whirlwind of introductions and meetings to help me understand the projects progress, I received a very warm welcome from the team and instantly felt like a valued member of the project.
Over the next few weeks, I focused on meeting as many people from within my network as I could, to help understand their roles and backgrounds. I also began to familiarise myself with the study protocol and getting up to speed with where things stood, all important steps to get grounded in the work (not to forget the essential training!).
One of the brilliant things I have noticed since starting, is how passionate the team are and how well everyone collaborates. The Kingston University team, alongside Dimensions and MacIntyre colleagues, support workers, families and Quality Consultants, all coming together to pool knowledge and ideas, to help create the wonderful resources we now have.
A key aspect of my role will be to recruit social care workers within Dimensions to test and use the toolkit, and I am looking forward to sharing the amazing resources which have been created. It is clear to see, from a relatively outside perspective, the time, attention to detail and consideration that has gone into creating these.
So far from being involved in the project, I have learnt that end-of-life care planning is a complex, multifaceted domain, that raises a lot of questions and sometimes not a lot of answers! It encompasses a wide range of emotional, religious, and ethical considerations and that planning is often so limited or non-existent for those with learning disabilities.
That is why I am so pleased to be involved in the amazing work that will help transform the experience of funeral and illness planning for countless people with learning disabilities and their families. By providing the toolkit, we can empower care workers and those they support to navigate a challenging conversation with confidence and dignity - which is no small feat!
Overall, this first month has been full of learning and laying the foundation for the exciting and meaningful work ahead. I'm eager to continue growing in my role as Project Lead and feel inspired by the passionate team alongside me. I know there will be some challenges and obstacles along the way, but I feel confident we will succeed if we keep those we support at the centre of all we do.
Onwards and upwards!