We invite you to comment: The WSO Stroke Research Committee research recommendations relevant to the WSO mission for Stroke Treatment, Prevention and Recovery

The WSO Stroke Research Committee has been working to establish a set of research recommendations relevant to the WSO mission for Stroke Treatment, Prevention and Recovery.  In establishing these draft recommendations the committee systematically collated, categorized, and reviewed research recommendations from multiple other national, regional, and patient-centered stroke organizations.  The WSO Board members were asked to review and prioritize these research recommendations.  Recommendations were rated on how strongly they definitely should be included among the top recommendations related to the WSO mission.  The top recommendations are listed below:

Stroke Treatment

1. Expand and integrate existing stroke trial networks to accelerate translation

2. Establish stroke centers and stroke units to assist patients with acute stroke

Stroke Prevention

1. Establish a global chronic disease prevention initiative that includes stroke as a major focus among a cluster of conditions

2. Prevent vascular cognitive impairment

Stroke Recovery

1. Standardize the practice of post stroke rehabilitation based on best evidence

2. Evaluate of the best ways to address and improve life after stroke:

            (a) Improve cognition after stroke;

            (b) Help people come to terms with the long-term consequences of stroke;

            (c) Enhance recovery from aphasia; and

            (d) Improve arm recovery and function.

These draft recommendations approved by the WSO Board in October 2014 are now being posted for member and public comment.   At present, we request WSO members and other stroke constituents to review these draft recommendations and post any comments on the BLOG.  Comments will be collated and reviewed by the WSO Research Committee and included in their final report.  We will be accepting comments until Friday, January 23rd, 2015.

If you are having difficulty commenting then please feel free to email your comment directly to carmenl@unimelb.edu.au or on our Facebook 

Global stroke bill of rights

As a person who has had a stroke, I have a right to:

Receive the best stroke care

Receive the best stroke care
• a rapid diagnosis so I can be treated quickly
• receive treatment by a specialised team at all stages of my journey (in hospital and during rehabilitation)
• receive care that is well coordinated
• access treatment regardless of financial situation, gender, culture or place that I live
• receive treatment that is right for me as an individual – considering my age, gender, culture, goals and my changing needs over time

Be informed and prepared

Be informed and prepared
• be informed about the signs of stroke so I can recognise if I am having one
• be fully informed about what has happened to me and about living with stroke for as long as I require it

Be supported in my recovery

Be supported in my recovery
• be provided with hope for the best possible recovery I can make now and into the future
• receive psychological and emotional support in a form that best meets my needs
• be included in all aspects of society regardless of any disability I may have
• receive support (financial or otherwise) to ensure I am cared for in the longer term
• be supported to return to work and/or to other activities I may choose to participate in after my stroke
• get access to formal and informal advocacy to assist me with access to the services I need
• be connected to other stroke survivors and caregivers so I may gain and provide support in my recovery from 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 Global Stroke Bill of Rights is not a legal document. It is a guide to the elements of stroke care that are important to stroke survivors and care givers to drive to the best possible outcomes and experiences associated with stroke.

The Global Stroke Bill of Rights was developed by us, a group of stroke survivors and caregivers from each region of the world. We were supported by a larger group of survivors and caregivers and by thousands more from different countries, cultures and language who completed surveys to understand if there are any differences in different parts of the world. Their responses demonstrated that what is considered to be important in stroke recovery is consistent regardless of where people affected by stroke live.

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 hope that it is a useful tool to help improve access to care for people affected by stroke, better diagnosis and treatment of stroke which ultimately leading to improvements in stroke care and support across the globe.

Marta Cerar #strokeart2014

I am Marta Cerar, and it was summer 1997 when I went to mountains. Somehere half way hiking I had a stroke. My partner helped to came down to valley and to the hospital. My life has suddenly changed completely; I had a lot of rehabilitation but was retired very soon after my stroke and only at age 31. I had two children to care for. My right arm is only partly working, soon after stroke I started to ski, cycling, swimming and hiking in low hills. But was searching for more activities to fill in my life and attended few courses. Painting, however was always attractive to me and I am now painting with my left arm, using different painting techniques. I enjoyed it so much that often forget that I am using my left arm.

Ivan Lesjak #strokeart2014

I am Ivan Lesjak from Slovenia. I am 68 years old. I value my life through what I am doing and have been always busy. Stroke has »caught« my arm and leg but my longing for doing meaningfull occupations has stayed within me. After stroke, I have been searching for my occupations… a lt of trial and errorr… and finally – I have found the meaning of life again. The desire from my youth to do something that time did not allow me to do it in the past has emerged into modelling the old vessells from 15.-16. centrury. Some also have wireless management and they were already sailing in the lake close to where I am living. I have made some tools by myself and endless hours of hand work has given me a lot of pleasure. I am proud of what I am doing.

Molly McGlade #strokeart2014

					I live in Draperstown and was born on 20 August 1934 in Ballymacpeake, County Antrim. I suffered my first 'mini stroke' at the age of 55. This didn't affect me so much and I recovered well. At the age of 61 I then suffered a 2nd stroke which was a bleed on the brain. I needed alot of speech therapy. I joined the NI Chest Heart & Stroke shortly after my first stroke. I found it very helpful to meet with people who suffered the same thing. I also got introduced to new activities - eg. art, pottery, handcraft work. I have enjoyed the art work in particular. (see example below). I suffered a 3rd stroke at the age of 70 which affected my balance on the left hand side. I received physiotherapy along with occupational therapy. I enjoy meeting up with colleagues at the NICHS in Cookstown and have made good friends. We have produced alot of art work which I enjoy doing.

Jo Avis #strokeart2014

I started painting during my rehab and recovery from x 2 massive strokes that I had at 26. They were caused by the heart infection endocarditis. I had to relearn to walk, talk, swallow and all activities of daily life. But over a 2 year period I manage to regain enough lost skills to return to my job as a special needs tutor at the local college, although only part time and back to living independently rather than at my parents home. I am doing very well in general but do suffer with sensory deprivation and central stroke pain on my left sides and lots of headaches as a result if my stroke but I not complaining, I am better than ever predicted. With a friend I started a Facebook page (www.facbook.com/year10.avis.art) to mark my ten year milestone as a stroke survivor.by selling my paintings to fund raise (for the Stroke Associations life after stroke centre Bromsgrove UK) It felt like the right thing to do as my love for painting was as a direct result of having strokes. I do landscapes, seascapes and abstract painting using acrylics, My painting is a daisy field 80cm x 30cm x 3cm

Hikka Honkasalo #strokeart2014

My name is Hilkka Honkasalo. I live in Finland where I was born. I had a brain tumor resection done in 2000, leaving me with a right-sided hemiparesis and aphasia. I had to give up my 30-year career in the garment business. After the onset I found painting. I started with the aquarelle and acrylic painting, but have moved onto oil painting completely now. I am inspired by the following artists: Soile Yli-Mäyry – strong colors and the dissimilarity Claude Monet- softness of the colors Vincent van Gogh- the movement and craziness, expression of ugliness with a beauty Paul Gaugin- the colors Name of my art piece for the competition is “Joakim “

Jack Sully #strokeart2014

Age 80. Jack has his stroke in 2003 and has weakness down his right side and has learnt to use his left hand post stroke. Jack was not involved in art prior to his stroke and a friend told him about the Thornbury Stroke Art Group. Jack States the inspiration behind this piece was a Christmas card and it took him 4 hours to complete. When asked what art means to him, Jack replied ‘A new interest that I find therapeutic’

Jo Smith #strokeart2014

Age 60. Jo has always enjoyed art, she has trouble using both hands, she is unable to walk and has problems with her memory and speech. Jo enjoys attending Brushstrokes and using watercolours.

Elsie Pruett #strokeart2014

Age 80. Elsie had her stroke when she was a teenaged and has since had trouble walking and with dexterity. Elsie was not involved with art prior to her stroke and joined in art groups with friends post stroke. This piece was created as a birthday gift for a friend. Each piece took Elsie about 6 months to complete and her friend (June) wanted to show this piece to celebrate her achievements. When asked what art means to Elsie, she simply replied ‘Everything’

Graham Jerrold #strokeart2014

Age 72. Graham has his stroke in August 2010 and was left with right sided weakness and loss of manipulative skills. He also has some cognitive problems and memory loss. Graham always drew and sketched prior to his stroke an enjoyed visiting art exhibitions and galleries. Post stroke graham has art therapy at a hospice day centre and then joined an art group that meets once a week. This picture was produced at the suggestion of a very inspiring art therapist who helped Graham to overcome the despondency of loss of fine motor skills. It took Graham an hour to create this piece and he wanted to show it as it represents a complete break with his previous accurate and precise style and he is able to recognise his merits. When asked what art means to him, Graham replied ‘It is something I can do alone or in company and I have met some very kind and appreciative people through joining a group’