Supporting stroke survivors not just to survive but to thrive

Craig Pankhurst, a stroke survivor from the UK, has established an exciting new stroke support organisation that combines his pre and post stroke life to support the recovery of stroke survivors using physical exercise.

Married with two daughters, two dogs and a cat, Craig is a keen sports fan and spent his younger years swimming and playing football, becoming an international swimmer in the 1990s.

Craig had a stroke on 28^th April 2018, at the age of 39.

‘It was in the act of blinking my eyes at 6am that I first realised I was not in a good way. The overwhelming feeling of the room spinning uncontrollably, yet in darkness as my vision had gone, resulted in a feeling of dread and fear. Little did I realise that at the age of 39 I was in mid-ischemic stroke and that life was about to change forever’.

Craig was admitted to Arrowe Park hospital for CT and MRI scans, with friends and family by his side. He had significant damage to his brain, with further scans showing a dissection of the vertebral artery.  

Craig’s biggest issue is post-stroke fatigue. ‘It is a dreadful experience that a sufferer has to live with every day. It is not like being tired’, says Craig. He manages his fatigue via a traffic light system. When he’s in his ’green zone’ Craig’s able to function pretty much as he could pre-stroke, albeit with a slight left-side weakness and concentration deficit. When in his ‘amber zone’, his speech and thought processes slow down and his left side weakness is more pronounced. In ‘red zone’, Craig becomes very limited in his movement and struggles to communicate effectively.

Craig has always been a very motivated individual who thrives on setting goals. He believes these traits will continue to support him in his recovery.  ‘Under the care of the Walton Centre in Liverpool, I continue to manage my rehabilitation to ensure I am best placed to live a positive and full life. This is why I wanted to start a charity to inspire fellow stroke survivors to embrace their new life in a similar, positive way. Meeting other stroke survivors, I realised that self-image and self-esteem are significantly affected and after the initial rehabilitation phase patients are signed off to continue their recovery on their own, exacerbating this loss of confidence. What has really helped me has been to find a personal trainer and a gym that can support my physical recovery, improving my self-confidence. A Stroke of Luck will do the same for survivors who may not have the same expertise or resources to do this for themselves, and need a bit of support’.

A Stroke of Luck launched on 1^st May 2019, only a few days after the first anniversary of Craig’s stroke, and the beginning of Stroke Awareness Month. There are over 1.2 million stroke survivors in the UK and 100,000 new strokes each year. Over two thirds of these survivors leave hospital with a disability. ‘We need to provide the opportunity for survivors to get active and promote physical rehabilitation for the benefit of all’, says Craig.

A Stroke of Luck will match stroke survivors with fitness professionals to help them to get active. A web platform is being developed where stroke survivors will register to become a member of the ‘A Stroke of Luck Survivor’s Club’, with access to health and wellbeing advice as well as fitness videos.

Personal trainers will also register to become a member of the ‘A Stroke of Luck Expert’s Club’.  Funding received by A Stroke of Luck will be converted to credits that can be used by the stroke survivor to book a session with a qualified A Stroke of Luck approved personal trainer.

Friday 6^th September 2019 will be the official launch of the A Stroke of Luck membership portal. ‘We don’t just want stroke survivors to survive, we want them to THRIVE. We would like to enhance the lives of every stroke survivor, regardless of their post-stroke effects, by giving them access to long-term physical and emotional care following the discharge from medical professionals’, says Craig.

For more information and to support A Stroke of Luck:

Please visit the A Stroke of Luck website www.astrokeofluck.co.uk

This blog includes extracts from the Wirral Life article Stroke Survivor Launches New Charity https://www.wirrallife.com/digital-issue

Know your Numbers - World Hypertension Day 2019

Today, May 17th is World Hypertension Day and we are supporting our partners’ efforts to raise awareness of hypertension and high blood pressure. Hypertension, or high blood pressure is a circulatory disease that is associated with almost half of all strokes. Knowing your numbers and managing your blood pressure is one of the key steps that in individuals and health workers can take to reduce the global burden of circulatory disease and stroke. The World Stroke Organization works closely the World Hypertension League and partners in the Global Coalition for Circulatory Health to draw attention to the need for more effective prevention, diagnosis and management of hypertension. As part of this partnership and in preparation for the commemoration World Hypertension Day next week, we are pleased to publish a guest blog from World Hypertension Lead President, Daniel Lackland.

The theme for World Hypertension Day 2019 is Know Your Numbers and the goal is to build awareness of high blood pressure (BP) how it can be prevented and managed in all populations around the world. This decision was based on global statistics, indicating that despite the dangers of unmanaged hypertension, only 50% of individuals with the condition were aware that they actually had high BP. In some populations, awareness is very low, at <10%. Building awareness of hypertension diagnosis has two critical components: (1) establishing high‐capacity community screening programs for BP in those at risk, and (2) promoting routine measurement of BP by health‐care professionals at all clinical encounters. These critical diagnostic steps will help to control hypertension in the global population and move us closer to achieving the United Nations goal of a 25% reduction in uncontrolled hypertension by 2025.

WHL, with their member organizations will work to implement screenings globally, but we also strongly encourage any WSO members who conduct BP screenings to contribute reports recorded in May 2019. This will help us to, not only raise individual and community awareness of hypertension, but to build more effective responses to hypertension in our shared communities.

A reporting form is available on the WHL Web site (www.whleague.org). Participants are asked to provide general information on their team, location, number screened, and NCD education provided. Participants may also report on proportion of known treated hypertensive people screened whose BPs are “controlled” (<140 mm Hg systolic and <90 mm Hg diastolic).

WHL recognizes that there are complex challenges to the prevention and control of hypertension globally, and, in most settings, efforts to prevent and control hypertension are not comprehensive, or coordinated. We can do our part to improve that, by working together in partnership to mark WHD to ensure rigorous BP measurement and NCD awareness efforts in the community and clinical settings. I strongly encourage you to start planning, gathering resources and reaching out to your communities now to help address the biggest single risk factor for stroke.


Further resources
· Resources to support screening initiatves can be accessed from (http://www.whleague.org/index.php/j-stuff/blood-pressure-assessment-train-the-trainer). In addition to screening protocols, a Train the Trainer module for establishing an evidence‐based BP screening site, supporting PowerPoint slide sets and YouTube videos, are available.

Excerpts from the stroke support organization main session at the 2018 World Stroke Congress are now live on the World Stroke Academy

There was significant stroke support organization (SSO) representation and content at the 2018 World Stroke Congress in Montreal, and for the first time the SSO main session was recorded and excerpts are now available on the World Stroke Academy. 

There was a range of SSO activity throughout the World Stroke Congress. The Testimonial Exhibition and e book included 145 stories of people affected by stroke from 28 countries. During the Congress the posters were placed by the list of Congress participants, and many delegates commented that it was a reminder that people affected by stroke across the world are a fundamental part of the World Stroke Congress – ‘the reason we are here’.

The SSO main congress session opened with ‘The power of SSOs as change agents to improve stroke systems of care’, chaired by Heart and Stroke Canada. The first presentation is on the Canadian experience of the building blocks for stroke systems change. The presentation on Heart and Stroke’s indigenous health strategy highlights that bringing together different knowledge systems can generate innovation. The talk on driving systems change in a complex political environment, stresses the importance of keeping a focus on patient and caregivers’ needs and ensuring transparency.

The last talk in this session is by Sheila Farrell, a Canadian stroke survivor. Sheila emphasizes the gaps in long term stroke support for survivors, and the importance of listening to survivors’ experiences to understand the reality of life after stroke, and to help build a better roadmap for future stroke survivors. She calls for the loop to be closed between scientific research, the disciplines of the healthcare system, the community and the patient.  

The next SSO session focuses on some of the less talked about effects of stroke. We hear about stroke specific end of life issues, including communication difficulties and the lack of discussion on end of life planning, as stroke is often a ‘bolt from the blue’. The relationships and intimacy talk highlights the fear and concern often felt by stroke survivors in relation to these issues, and the need for training to build the confidence of health care professionals in discussing relationships and sexuality.  The third talk in this session looks at psychological changes as a result of stroke, and underlines the importance of sharing stroke survivor testimonials to highlight the psychological impact of stroke, to challenge stigma and to encourage stroke survivors to identify with others; building peer support. The conclusion of this session is that there is a crucial role for SSOs across all these issues: to advocate for better support, training and research; to identify and meet needs and gaps through their stroke support activities; and to develop resources.

Thank you to all the SSO speakers and to the congress delegates who engaged so positively with the important work that SSOs are doing across the world. 

If you are a member of WSO you can access the SSO content here https://world-stroke-academy.org/wso/2018/montreal/261548