In June 2013, George Scola was approached by the Heart and Stroke Foundation SA and asked if they could nominate him to the World Stroke Organisation (WSO) to participate in a working group made up of seven core members from regions around the world to develop a Global Stroke Bill of Rights, particularly aimed at stroke survivors and carers. Being passionate about elevating stroke awareness and the devastating consequences a stroke has on the lives of individuals and their families and also the low level on the general health agenda in SA, George did not hesitate at the opportunity to create a document that would be developed by stroke survivors and cares.
The BOR project was led by Dr. Erin Lalor (CEO National Stroke Foundation Australia) and very closely assisted by JJ Divino together with a team from WSO in Geneva. The working group was brought together in Vienna, Austria for four days in September 2013. Once we had met in Vienna, and after numerous emails and tele-conference phone calls, draft surveys for stroke and for carers were sent out to assess the work achieved at the time. The survey was sent out in Arabic, Chinese, English, French, German, Hindi, Japanese, Portuguese (Brazil), Russian and Spanish. The final draft was finally approved and accepted and released to the world at the Istanbul WSO conference in October 2014. These rights identify the aspects of care that are important for ALL stroke survivors and caregivers from across the world.
The Stroke Bill of Rights is not intended to be a legal document that mandates care, but rather as a guide to the elements of stroke care that are important to drive to the best possible outcomes and experiences associated with stroke. It is a tool that can be used by individuals and organisations to communicate with stroke care providers and with governments and their agencies about what people affected by stroke think are the most important things in their recovery. Many aspects of care considered important by those affected by stroke, and included in this document, have been shown to reduce death and disability after stroke. The document considers stroke survivor’s rights across the field from prevention, acute care and very importantly, long-term care.
It is important to note that the Bill of Rights also comes with responsibilities from the patient’s side…we as stroke survivors must understand that we are responsible for our own long term recovery! The issues identified through this process are outlined in the Global Stroke Bill of Rights, listed according to the importance survivors and caregivers placed on them.
We believe that a person anywhere in the world who has had a stroke has the right to:
- A rapid diagnosis so he/she can be treated quickly.
- Receive treatment by a specialist team at all stages of his/her journey (in hospital and during rehabilitation).
- Be fully informed about what has happened to him/her and about living with stroke for as long as he/she requires it.
- Receive care that is well coordinated
- Be provided with hope for the best possible recovery he/she can make now and into the future.
- Access treatment regardless of financial situation, gender, culture or place that he/she lives.
- Be informed about the signs of stroke so he/she can recognise one if he/she is having one.
- Treatment that is right for him/her as an individual considering his/her age, gender, culture, goals and my changing needs over time.
- Psychological and emotional support in a form that best meets his/her needs.
- Be included in all aspects of society regardless of any disability he/she may have
- Support (financial or otherwise) to ensure he/she is cared for in the longer term.
- Be supported to return to work and/or to other activities he/she may choose to participate in after his/her stroke.
- Access to formal and informal advocacy to assist me with access to the services he/she needs
- Be connected to other stroke survivors so he/she may gain and provide support in his/her recovery from stroke.
BOR WORKING GROUP
|Brazil||Magda Spalding Perez|
|South Africa||George Scola|
SCHOOL AWARENESS PROGRAM