Deans' stroke musings: What do people with lived experience of stroke need to thrive?

Changing stroke rehab and research worldwide now.Time is Brain! trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 523 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

My blog is not to help survivors recover, it is to have the 10 million yearly stroke survivors light fires underneath their doctors, stroke hospitals and stroke researchers to get stroke solved. 100% recovery. The stroke medical world is completely failing at that goal, they don't even have it as a goal. Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It lays out what needs to be done to get stroke survivors closer to 100% recovery. It's quite disgusting that this information is not available from every stroke association and doctors group.

Wednesday, January 17, 2024

What do people with lived experience of stroke need to thrive? - WSO

My god, the WSO doesn't know the answer! IT'S SO FUCKING SIMPLE, YOU BLITHERING IDIOTS: 100% RECOVERY!

What do people with lived experience of stroke need to thrive? - WSO

The WSO Global Stroke Bill of Rights channels the voices and experiences of survivors and caregivers around the world into a clear call to action for healthcare providers. It is a key resource that supports collective advocacy for care that meets the needs and improves the quality of survivors and caregivers. As part of our #LifeAfterStroke campaign, the World Stroke Organization is calling on all stakeholders to ‘read it, sign it and share it’.

The Global Stroke Bill of Rights is organized into three broad categories prioritized by the survivors and caregivers from around the world who led its development.(Well, then you didn't talk to the right survivors, you bamboozled them with the tyranny of low expectations! Shame on you!)

The right to the best care(NO, NO, NO!100% RECOVERY!)
The right to be informed and prepared
The right to be supported in my recovery

Each of these categories addresses several issues in relation to treatment, care and support and all are focused on not just the immediate, but the long-term needs of survivors and carergivers. You can find the full text and toolkit to help you use the resource for local advocacy work on the WSO website.

Several WSO members have used the Global Stroke Bill of Rights to drive greater awareness and action on life after stroke support. For example, the Stroke Association Support Network Ghana (SASNET), used the document in their policy advocacy calling on the government to adopt and implement the Global Stroke Bill of Rights to improve stroke awareness and help take better care of all Ghanaian stroke survivors. In their meetings with government ministers, the document proved extremely valuable in setting out the priorities for stroke in Ghana and has helped put patient needs at the heart of discussion of stroke care in a challenging healthcare context. ‘There are many competing demands on our health system in Ghana, the clear statements in the Global Stroke Bill of Rights have helped us to have focused conversations with the Ministry of Health. We have now been able to collaborate with the Government in national awareness campaigns’ says Ad Adams Ebenezer, Executive Director of SASNET-Ghana.

Dr Wan Asyraf Zaidi, consultant neurologist in Malaysia and WSO Future Stroke Leader has used the translated Global Stroke Bill of Rights to advance awareness of the needs of survivors and caregivers, as well as providing a resource to support practitioners to reflect on their own practice. ‘Having the Global Stroke Bill of Rights in Bahasa Melayu has been really important for stroke awareness in Malaysia. We have been able to promote these priorities to the general public, patient groups and decision makers. As a stroke clinician the document is also an important reminder of how we as health professionals need to support those at risk of stroke and those who have experienced a stroke’.

You can download the full Global Stroke Bill of Rights document, and find toolkits to support engagement and awareness on the WSO website.

From January through March 2024, the World Stroke Campaign will be focused on raising awareness of the needs and experiences of survivors and caregivers and the importance of long-term care and support. You can follow the WSO Life After Stroke campaign on our Facebook and Instagram and Twitter/X channels and share your experiences, perspectives and resources to improve #LifeAfterStroke.