A Blog from the European life after Stroke Conference, March 2023
Let us think about a question that many of us in the stroke community have been contemplating for far too long.
“Is it too much to dream of a day when a stroke survivor opens one of our conferences and says, ‘Here is my story. I did NOT feel abandoned when I got home?’ ”
Perhaps they might follow-up with.
‘I didn’t feel abandoned because, the support was there at the right time for me, and they recognised me as a person whose needs, and those close to me, can change over time.’
Too often and for too long, the message of being abandoned, always delivered with a combination of passion, frustration, and hope for change, has served to emphasise the enduring gaps in services for both people living with the effects of stroke and their carers. These voices resonate across the Stroke conference halls, but the message doesn’t always escape the walls.
The European Life After Stroke Conference (ELAS 2023) gave us a platform to debate this challenge in a shared workshop with people with stroke, their carers, clinicians, and academics. Our Chair, Professor Fiona Jones, set us the task of harnessing our ideas, creativity, experiences, and skills to co-create a positive ‘call-to-action’ on how to cultivate stroke services and a community where people can live well after stroke.
Short time, tall task. Think elevator pitch, flip charts, and a focus on the reason we were all there. And like the voices of the beautiful aphasia choir that filled the conference reception area the evening before, we rose!
We began with three short presentations capturing different contexts through which we might address the sense of abandonment that people feel:
- Starting with Mr. Jim Currie, who gave life to his experiences as a stroke survivor through his powerful words. His filmed interview held us transfixed in the moment as he told us that ‘All stroke survivors would like to be treated how you or a member of your family would like to be treated and not feel we are dumped or abandoned with no clear pathway after leaving hospital. Allow us to be part of our own rehabilitation and have our hopes and dreams even if you think they are unrealistic, let us make that decision as this is also part of our rehabilitation and the beginning of coming to terms in accepting what has happened to us. Talk with us and allow members of our family/friends to be part of our journey together, you will be amazed at what we can achieve. We need to know that there is a care plan there for us when we leave hospital that is designed for our needs and not just a generic one. But within all this madness there are rays of sunshine coming from clinical staff who with all their heart want to make a difference to our lives and make it that little bit better and for that we thank you’
- This was followed by Dr Nicola Hancock, who called for us to build on the tremendous gains in acute stroke care that enable people to survive, to then support them to thrive. Nicola invited us to challenge, rather than conform to, the systems currently on offer to create a context of readiness for each person to achieve their goals, including how the use of technologies might serve the stroke community. The ambition here was an individualised approach, that can then reverberate across a whole community as people feel valued, supported and capable of expressing their needs at a time and in a place that suits them.
- Finally, Professor Marie Elf emphasized the importance of the home and the local community as an important part of stroke rehabilitation. The integration of both environments brings exciting possibilities and some challenges. For people with living with stroke environmental factors greatly impact on the ability to participate in daily life, both personally and within society. If there is a mismatch between a person’s abilities and the requirements and constraints of their environment, it can impede daily activities and overall participation in life. Addressing these challenges is vital in creating supportive stroke services and communities where individuals can thrive after experiencing a stroke.
What followed the presentations was a discussion filled with energy, passion, and a shared drive to inspire action. In a short time, we were able to capture that conversation and formulate our agreed priorities.
There was a drive to start from a point of basic human rights, and the need to consider the place of the 2006 Convention on the Rights of Persons with Disabilities. We heard of the power of peer support through the sharing of lived experiences, and the need for specialist services from day one that saw the person, their family, and their environment.
We quietened and drew breath when a group member expressed the need for support and awareness of the pain of ‘why me?’ And through the rhythm of the shared conversation, the shape of our priorities emerged, truly co-created by the group:
With just a few minutes to spare we debated and voted and finally got to our elevator and with our pitch- and these three priorities for change are what we want everyone in the stroke community across Europe to know.
- The window for information should not close after a stroke has happened. We must provide small, bite-sized, and timely information – and before doing so ask people what they want to know.
- There should be greater respect for the critical role of patient support organizations integrated into all stroke pathways.
- People with lived experience of stroke (and their families/carers) should be consulted and involved in how services are delivered – and much earlier in the planning. They may well have the answers.
And now – just as the lyrics in the songs we heard from the aphasia choir transcended words and notes in a score to become uplifting melody, so we are tasked with raising these priorities from the page into positive action for the stroke community.
Nicola, Marie, Jim, and Fiona, ELAS 2023