André de Rosa Spierings: SSOFT Champion & User Acceptance Tester

André de Rosa Spierings: SSOFT Champion & User Acceptance Tester

For a substantial part of my professional career I have worked in the field of digital communication and services. I not only appreciate the value that digital tools can bring to the health care sector from a professional stand point but from a personal one too. Several years ago, my former wife suffered a serious stroke which resulted in her having a severe form of aphasia; her ability to both speak and understand language verbally or in writing was impaired. We found that an iPad could offer many digital solutions for her and she made intensive use of it to help communicate with us.

When I heard that SAFE was exploring a digital way to share knowledge in an innovative way, I was very pleased and naturally wanted to cooperate. Initially, I became involved with the SSOFT Champion Group which consisted of stroke survivors and other members of SSOs from across Europe. We looked at designs, listen to voiceover artists and fed back our input directly back to the design team.  I decided then to also become part of the User Acceptance Testing Group, and I testing the first few modules very intensively due to my experience with digital applications. Thanks to testing work carried out by the various volunteers, the project team was able to make great strides forwards. Every subsequent module developed became better and better.

SSOFT is a fully-fledged eLearning tool that covers the many aspects that play a role in the support and advocacy of people with a stroke. The modules make optimal use of text, images and video to share more knowledge; making it very pleasant to use.

SSOFT has great potential to expand, I hope that the tool will never be truly “finished” but remain a live environment that always adapts to the latest developments and experiences. I would truly like to see it succeed and expand into a community platform where people can share experiences and knowledge across Europe. The first step has been taken with the current version of SSOFT and future developments will become clear through intensive use.

About the author

André is an active National Board member of, the largest association in the Netherlands that represents the interests of people with non-congenital brain injuries, including stroke. He is also an expert on digital communication and services who advises the government and healthcare sector in the Netherlands. André has been actively involved as a Champion in the initial stages of development of SSOFT as well as a User Acceptance Tester for many of the modules contained with SSOFT.


Study: How well do post-stroke reviews support adults with long-term needs after a stroke?

Study: How well do post-stroke reviews support adults with long-term needs after a stroke?

In the UK, health policy recommends that stroke survivors should be reviewed at six-weeks, six-months and at one year after their stroke1,2. However, reviews are carried out differently across the UK and the process has not been properly evaluated. This study explored the review process, focusing on the six-month review. Three sites were selected in England. We interviewed stroke survivors and their carers at six-weeks, six-months, and where possible one year after coming home from hospital. We also observed their reviews and interviewed clinicians, managers and commissioners. We interviewed 46 stroke survivors, 30 carers and 28 professionals.

We found that reviews carried out by stroke nurses were focused on medical issues whereas those completed by a Stroke Association co-ordinator were more focused on social issues. Professionals usually saw the review as an opportunity to follow-up on issues that needed to be dealt with and signpost to other services. However, stroke survivors’ experience of the review was influenced by their experiences in hospital, their understanding of rehabilitation and their relationships with clinicians. They identified different priorities to those of reviewers, particularly when they had other long-term conditions.

Overall, most people found the six-month review helpful but not the six-week or the yearly review. Rather than having the review at set intervals, it would be more helpful if it coincided with coming home from hospital and after community rehabilitation has finished. Reviews need to link with what has gone before, for example, information on preventing another stroke. It would also be helpful to review therapy goals and encourage stroke survivors to set their own new goals for the next stage of their recovery.

Further information: or @vabrahamsonUoK

Full article:


Department of Health (2007). National Stroke Strategy [Online]. Available from:

Royal College of Physicians (2016). National Clinical Guidelines for Stroke. Intercollegiate Stroke Working Party. Fifth Edition [Online]. Available from:


Stroke survivors and those at risk urged to focus on yoga and tai chi

Stroke survivors and those at risk urged to focus on yoga and tai chi

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One of Australia’s biggest health issues could be checked if more people took up yoga or tai chi and reduced their blood pressure, an Australian study has found.

Stroke costs the country $5 billion a year through treatment and loss of productivity, affecting 56,000 Australians in 2017, equivalent to one stroke every nine minutes.

A paper published in Future Neurology by researchers from Monash University, the University of South Australia (UniSA) and the University of Melbourne shows the impact that mindfulness-based interventions (MBIs) such as yoga and tai chi can have on reducing hypertension, fatty acids and blood sugar levels — all risk factors for stroke.

Researchers say both Eastern practices have the potential to mitigate stroke risk as well as help support stroke survivors.

UniSA Senior Lecturer in Human Movement, Dr Maarten Immink, says physical activity plays an important role in preventing recurrent stroke but many stroke survivors may have limited mobility.

“This is where yoga and tai chi are so helpful. They are gentle, movement-based MBIs which help people focus — a state of mind which stroke survivors often lose — and be active at the same time,” Dr Immink says.

The researchers analysed 26 studies published between 1985 and 2017 which examined how yoga and tai chi moderated key stroke risk factors, including blood pressure, cholesterol, diabetes, atrial fibrillation, smoking and alcohol consumption, obesity, anxiety and depression.

UniSA Dean of Health Research, Professor Susan Hillier, says there is increasing evidence that MBIs can be an effective and noninvasive way of reducing hypertension — the biggest stroke risk factor.

“Some evidence suggests that MBIs such as yoga and tai chi regulate blood pressure by teaching people to breathe deeply, balancing and stabilising their autonomic nervous system and lowering their heart rate,” Prof Hillier says.

The stroke specialist says nearly one third of adults around the world suffer from high blood pressure, with 23 million additional strokes projected in the next 12 years.

“Survivors of stroke are at an increased risk of another one — 43 per cent likely within 10 years, 32 per cent within five years and 16 per cent within one year — so it is important we find interventions to help reduce the major risk factors,” she says.

Apart from reducing blood pressure, the research shows that MBIs can help improve diabetics’ health by increasing blood and oxygen supply to the tissues, helping to produce insulin, and boosting anti-oxidants.

Story Source: University of South Australia. “Stroke survivors and those at risk urged to focus on yoga and tai chi.” ScienceDaily. ScienceDaily, 5 November 2018. <>.

Dangerous blood pressure caused by specific signalling in the brain

Dangerous blood pressure caused by specific signalling in the brain

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About 6 million Australians aged 18 years and over have high blood pressure. Of these, more than two thirds had uncontrolled or unmanaged high blood pressure (not taking medication), representing 4 million adult Australians.

High blood pressure, or hypertension, is suggested to be one of the leading risk factors for heart disease.

The process in which high blood pressure causes heart disease is not completely understood.

But now scientists at the Baker Heart and Diabetes Institute have found that high blood pressure caused by specific signalling from the brain promotes heart disease by altering stem cells with the bone marrow.

The results, published in Haematologica demonstrate how an overactive sympathetic nervous system that causes elevated blood pressure can instruct bone marrow stem cells to produce more white blood cells that clog up blood vessels.

The Baker Institute’s Head of Haematopoiesis and Leukocyte Biology, Associate Professor Andrew Murphy says the findings represent a new era of heart disease research.

“Hypertension is a major, independent risk factor of atherosclerotic cardiovascular disease, but we need more information to determine how it is resulting in heart attacks and strokes,” said Associate Professor Murphy.

Atherosclerotic cardiovascular disease is a build-up of cholesterol plaque in the walls of arteries, causing obstruction of blood flow.

“We now know that significance changes in the immune system contributes significantly to heart disease,” he said. “We aimed to determine how the sympathetic nervous system through the brain directly promotes atherosclerosis in the setting of hypertension.”

“We have discovered that this form of high blood pressure, often associated with stress, causes changes within the bone marrow leading to increased white blood cells circulating though our vessels. This is significant as the general view of hypertension is that it is mainly a disease of the blood vessels, which means other heart damaging events are missed.”

The team is now exploring the specific molecules involved, which may shed light as to why some current therapies are ineffective. They also suggest that managing stress, anxiety and pain are likely to help in controlling this form of hypertension and the effects it has on the body’s bone marrow stem cells.

Story Source: Baker Heart and Diabetes Institute. “Dangerous blood pressure caused by specific signalling in the brain.” ScienceDaily. ScienceDaily, 1 November 2018. <>.

Podcast #1 – Stroke and Women on

Podcast #1 – Stroke and Women on

Stroke is No. 1 cause of mortality in women in most countries. Some people say it’s because of statistics- we live longer than men. Does this mean that nothing can be done about it?

Jelena Misita, SAFE Awareness and Advocacy Manager had an interview with Valeria Caso, MD, PhD, FESO. Valeria Caso is a stroke neurologist at the University of Perugia Stroke Unit and she is a past ESO President.

Please click on the banner below to access the podcast.