The Angels Initiative won the prestigious 2018 EFPIA Health Collaboration Award

The Angels Initiative won the prestigious 2018 EFPIA Health Collaboration Award for Improving Stroke Care

In November 2018 the European Federation of Pharmaceutical Industries and Associations (EFPIA) announced the winners of the Health Collaboration Award. In competition with 80 submitted projects, the Angels Initiative was the overall winner of the EFPIA Award for 2018.

The Angels Initiative is a unique healthcare programme launched by Boehringer Ingelheim, in partnership with the European Stroke Organisation (ESO), the World Stroke Organization (WSO) and the Stroke Alliance for Europe (SAFE). The Angels Initiative’s goal is to improve stroke outcomes, save lives and reduce long-term disability.

The Stroke Alliance for Europe, a stroke support organisation member of WSO,  collaborated with the Angels Initiative in Europe in 2018. In selected hospitals in 12 European countries: Spain, Serbia, Poland, Czech Republic, Latvia, Croatia, Macedonia, Greece, Ukraine, Georgia, Hungary and Turkey, stroke patients and their carers are provided with information on stroke and next steps on their path to recovery. 

There are five patient-focused brochures, which are translations of Stroke Association UK resources, and include local information. 

 “Patients and medical staff like the brochures. Everyone thinks they are very helpful.”

Adam Siger, Polish stroke support organisation Fundacja Udaru Mozgu

“We didn’t have similar patient materials in the past. Now that we do, patient often take all five different brochures and even try to take more copies, for relatives and neighbours.”

Mikheil Shavgulidze, Georgian stroke organisation Mkurnali Foundation

Childhood Stroke Project offers families time to talk, emotional support, information, and practical help

Anna Panton, Childhood Stroke Project Manager in the UK, tells us about the work the project does to support those affected by childhood stroke.

  

Florentina Meggersee, Dr Anne Gordon (Senior Consultant Occupational Therapist Evelina London) and Anna Panton

How did the project come about?

The Childhood Stroke Project was set up in 2013, and I was lucky enough to start in the Project Manager role at that time. Families had expressed a need for more information, advice and support following a diagnosis of stroke in childhood. The Stroke Association was interested in identifying how best to develop more services and resources for young people and families – and came together with Evelina London Children’s Hospital who were supportive of the project, and offer specialist paediatric neurosciences services.

What are the key issues in your area of work?

Thinking about the parents and young people I have met since 2013 several key issues are apparent:

• ·       the need for more public and professional awareness of stroke in childhood,
• ·        the importance of information and resources tailored to children and young people,
• ·        the value of practical support and advice when navigating health/social care and educational systems,
• ·        the significance of emotional and peer support. 

 There is also a priority of providing ongoing access to therapy for young people – particularly because the full impact of early stroke may take some time to become clear. 

It is not uncommon for families to get back in touch with our Support Service after some time has passed – as new rehabilitation support needs arise – physical, cognitive and psychological.

What have been some of the outcomes of the projects?

The Childhood Stroke Project has now set up a national Support Service – which is accessible to anyone in the UK.  The support service offers information, advice and emotional support, and helps family’s access therapy and community based services.  We also offer information sessions for schools, and work with educational staff to support the return to school.

The project offers two Support & Information Days each year – where families can network.  We have developed a range of freely available information resources – including our ‘Childhood Stroke Handbook’ with accompanying animations, our ‘Questions to Ask’ series for parents, our awareness raising posters, and medical information card.The project also supported the development of the 2017 Childhood Stroke Guidelines.

What has been the feedback from stroke survivors/family members to the project?

Ever since we started, a number of very committed parents and professionals have helped guide our work, and we also receive regular feedback from families who access our services.  The comments below reflect feedback on the support we offer, and the events we run:

“The support provided has literally been a life line at a time when there seemed to be no solution to our problems and we didn’t know where to start”

“This is an amazing responsive Service that ALL should know about”

“Thank you for a wonderful Support & Information Day. It is so helpful to meet and talk to other parents who are experiencing similar things.”

When reflecting on our service evaluation it is clear that offering time to talk, emotional support, information, and practical help accessing services are the main benefits families report.  I have now been in touch with some families for nearly five years, and it has been a privilege to both support them through difficult challenges and celebrate with them in amazing successes.

Childhood Stroke Project Team Anna Panton & Florentina Meggersee

If you would like to find out more about what we do, and view the resources we offer visit: https://www.stroke.org.uk/what-stroke/childhood-stroke-project

Going right to the top to tackle stroke

Pablo Vercelli's family knows too well the impact of stroke. To help raise awareness and funds to fight stroke globally, he, alongside his brother and two friends, is set to take on a major mountaineering challenge. They aim to raise $20,000 to improve stroke prevention, treatment and support in Argentina and around the world. Here he tells us what has motivated him to climb the highest mountain outside the Himalayas.

‘My mother passed away in 2009 due to a stroke. My sister also had a stroke three years ago, and was very lucky to survive. She received treatment and was looked after by professionals in a clinic in Buenos Aires, and is still recovering. The effect that stroke has had on our family has encouraged me to do whatever I can to shine a light on stroke and the opportunities there are to prevent stroke and improve life for survivors.’

My reason for preventing stroke? We are born to be happy!

I’m Madalena Viana from Portugal and unfortunately I have in my care, two very close family members that are stroke victims.

The first one was my husband, Manuel Viana, in 2007, who was 60 years old when he suffered a haemorrhagic stroke.

Stroke doesn't choose ages, races or religion - it can happen to anyone.

António Célio Ramos is 43 years old and key-account manager of a large national beverage company. He also cares for stroke survivor Diana Wong Ramos, his wife and is a member of the Portuguese Stroke Association.

My reason for preventing stroke? I want to be there for my children and my family

Foday Johnson, lives in Liberia and the UK. Here he tells us how his brother's stroke has spurred him on to do whatever he can to prevent stroke.

Before your brother’s stroke did you have any idea that he was at any risk? 

Not at all, in hindsight the signs were there though – he smoked, did not do exercise and had a poor diet. 

When and how did you realise he had a stroke? 

I was in London at the time, but his family around him suspected he was having a stroke. After his initial treatment he went to Monrovia for rehabilitation and was making some progress and returned home. After his return home he had a second stroke. 

My reason for preventing stroke? Watching my entire family carry the burden of my stroke

Mike Shapland is 56 years old and has experienced stroke twice here he shares his experience and why we should all think about our stroke risk and do more to prevent stroke.

Before the stroke did you have any idea that you were at any risk of stroke?

Well I had a stroke about 10 years prior to the recent one so although I personally didn’t think it would happen again – I think my wife was worried about my “lifestyle”. I found out recently that my Grandmother on my paternal side died from a stroke and that my Grandfather from my maternal side died of a stroke. I am aware that Strokes are not hereditary.

When and how did you realise that you were having a stroke?

I was at work – it was just after mid-day and one of my staff members asked what was wrong with my face – I also had a headache and “pin-pricks” of light spots flashing in my vision.

Can you tell us a little about your life before stroke?

I had been fairly successful in business being a Director of a listed Company. I regularly paid golf and was an active river fisherman. I was fairly social and mixed easily with people. I was seldom sick. I enjoyed alone time with various hobbies and interests. My family members being a wife Bev, and two daughters Kirsty and Caity, were in my mind a happy “team” who shared easily and openly with each other. They were very protective over each other and slotted easily into society at large. I was probably the most closed emotionally of the family.

How has life changed for you and the people around you since your stroke?

Dramatically – I was stopped from driving, I was boarded (stopped from working), I spent over a year doing rehabilitation and getting psychological help. My co-ordination was lost so I couldn’t play golf, walk easily, fishing was a struggle. Money became very tight, I went through a long stage of depression, my wife Bev was put under enormous strain keeping family and her work commitments alive. I became a loner, I couldn’t deal with noise, Malls, family get togethers, restaurants etc. I lost my pride and confidence and was terribly embarrassed that I’d had a stroke. My vision deteriorated and I live with headaches from what we assume is high blood pressure. I have managed to find part time work – but it is not meaningful.

What steps do you take now to prevent stroke?

I try to avoid stressful situations – my family better understand my people phobia so they do not put pressure on me to go out. I am on blood pressure medication and I have taken up a few hobbies. I do not smoke, but I am still overweight. I need to address that. I have read up quite a bit about strokes, so I am more aware of them, how easily they occur and that I am not alone.

What would you say to other people to make them take stroke prevention seriously?

I would tell them that I was normal once – just like them…and within a few hours, life would never be the same. I often tell them that excess stress is not worth the lifelong sentence of being a stroke survivor. I believe our lifestyle, our values of what we need and what we want are blurred and that chasing what we need, can end in disaster – I would also tell them that I am just one of the stroke survivors in my family, because my entire family have had to carry my burden – and the guilt of that is heavy.

What is your reason for preventing strokes?

There is very little knowledge out there of what a stroke is, how it affects you, how it affects your family and how common it is. This could be changed.

Stroke Survivor Stories - Youko Yamaguchi

Where were you when the stroke happened?  

My wife, Youko Yamaguchi, was traveling with her friends 17 years ago. While chattering at night club after dinner she got subarachnoid hemorrhage at the age of 53. The hotel manager called ambulance car, and she was carried to an emergence hospital.

Could you access hospital?

A phone call at 11 pm asked me to come to the hospital soon. I drove about 440 km all night, and arrived there at 7 am.  After approval sign, the operation took place. 

The shrinkage of blood vessels occurred 7 days after the operation and my wife suffered aphasia and became right side hemiplegic.

What expectations did you have for treatment, rehabilitation, recovery?

We didn’t know anything about aphasia, so we couldn’t imagine anything about treatment, rehabilitation and recovery.   She murmured “I am sorry, sorry, I made a serious thing!” ”How should I manage many tasks to be done”   She couldn’t recognize that she couldn’t continue these tasks.  Without any special rehabilitation, she left the hospital one month later.

What was your experience of treatment and/or rehabilitation?

2 days later after we returned home, my wife was admitted to a rehabilitation hospital cerebrovascular center.  Here physical therapy, occupational therapy and speech therapy began.  She was positive about the physical therapy because it was carried out in a large gym and she could interact with other patients.   But, occupational and speech therapy took place in small private room, and therapists sat down side by side without noticing the appearance of my wife.   They only executed the curriculum without any guidance from their superiors.  During 3 months stay, her communication didn’t improve clearly.  But, she could stand up and walk by herself and use a spoon and knife with her right hand.

What has helped in the recovery?

3 months later she moved to another rehabilitation center in Yokohama for 2 months, which mainly focused on language rehabilitation.   The speech therapist sat face to face with my wife, greeted and talked about easy topics.  Then, the language rehabilitation curriculum started. This speech therapist advised us to make a Japanese syllabary table. Each Hiragana was combined with each Chinese character which was easier to remember than Hiragana for my wife.  Using this table, rehabilitation was carried on.  The speech therapist also advised my wife to join the calligraphy circle which was open next door to the hospital.

After my wife left the hospital, we visited once every week for language rehabilitation for two and half years.   The speech therapist advised us to install a specific software to our PC, and advised us to write and send a short mail to her about any topics.  A few days later the return mail came back without fail. Video conversation through IPad facetime with daughters and grandchildren was also a great help for her rehabilitation.

What have been/are your fears?

When my wife has to live alone, how she can manage to live daily life without my support.   This is most serious matter to us.

How did your family and friends feel and respond?  

Stroke Survivor Stories - Tom Head

The stories of stroke survivors are what drives our fight at the World Stroke Organization to achieve our goal of a world free from stroke. Welcome to our Stroke Survivor Stories series, which we'll pop up on the blog every Thursday, you may wish to contribute to this poignant narrative of stroke globally. Please contact Sarah.Belson@stroke.org.uk

Where were you when you had your stroke?

I was visiting relatives in Kent with my family. My stroke occurred at a very young age, shortly before my 3rd birthday so I don’t remember anything about what happened.

Could you access hospital?

My Mum, a nurse, realised that something was wrong and took me to the nearest GP in Kent, then to the local hospital. From there I was taken by ambulance to Guy’s Hospital in London.

What expectations did you have for your treatment, rehabilitation, recovery?

Very few. I think everyone hoped the treatment and rehabilitation would minimise the effect of the stroke on my life although as I had to grow and develop there were lots of unknowns.

What was your experience of treatment and/or rehabilitation?

The NHS treatment was excellent throughout my childhood. I was seen by paediatric doctors and had regular physiotherapy to help with the walking difficulties and dystonia I suffered. There have been many challenges as the approach was to monitor and wait and see how my body developed and react with medications and treatments along the way. When I reached adulthood and moved around the country more I did find it more difficult to access treatment and to have continuity of care, but now have an excellent orthopaedic surgeon who monitors my progress and has operated on me to alleviate arthritic pain caused by my right sided weakness, dystonia and uneven gait.

What has helped you in your recovery?

My family who have been there from the beginning and took me to so many hospital appointments when I was young. As my stroke occurred so early in life I haven’t known any different so it’s a case of working out ways to overcome challenges rather than thinking how I did things before the stroke and how to do them after.

What have been/are your fears?

When I was young I feared being different and not able to do the same things as my friends. As I’ve gotten older the worries have mainly been focused on whether I can live independently and just how the wear and tear on my body because of the after affects of my stroke impact my day-to-day life. There is a lot of uncertainty and new health issues crop up because I’ve lived with right sided muscle weakness and dystonia for so long.

How did your family and friends feel and respond?

Naturally there have been anxieties along the way but on the whole I don’t feel I’ve been treated any differently. We have all had to adapt but 35 years on from my stroke it has shaped who I am but does not define me.

Stroke Survivor Stories - Sas Freeman

Where were you when you had your stroke?

I am a survivor of two strokes, both at the age of 45. On the morning of my first stoke, I woke with a tremendously strong pain in a small area on the left side of my head. I am no stranger to migraines but it was stronger than a migraine yet in such a small area. 

Could you access hospital?

I told myself it would pass and I could go to work as usual. Time passed and by now I was tripping over, my eye weeping and I was struggling to get my words out as I phoned my doctors for help. Help was not as hoped, the response being 'there is a cancellation if you come now!' I have no idea how I managed this, where I left the car or its keys! 

What was your experience of treatment and/or rehabilitation?

On arrival help was fast and efficient, realising immediately it was a stroke, hospital staff were waiting for me to begin scans etc.

What expectations did you have for your treatment, rehabilitation, recovery?

I was left with right sided paralysis,loss of  speech, weaker hearing and sight on my right side, my right arm and leg were twisted in and my face dropped, I also was left with cognitive difficulties and huge problems with fatigue, which even now six years on is still the case.

I have fortunately always been an optimistic and determined person, so despite eventually leaving hospital in a wheelchair with the departing message, 'this is as good as it is going to get,' I was not prepared at 45 to live the rest of my life totally dependent on others,

At that stage I had no idea what if anything I could do about it but I had to and would do something. 

What has helped you in your recovery?

I worked using visualisation, trying absolutely anything as I simply had nothing to lose. Eventually little by little, I began to make very small but some improvements. I did not ever let go of my positive mental attitude even in the very low times, and there were many.

This drove me to write my book, ‘Two Strokes Not Out’ to help fellow survivors through these difficult and lonely times and also their families who have also been thrown into this devastating mess without warning. The child forced to become carer, yet at school they return to child role. The book's intention is to be a companion and personal reference guide to the survivor and a support to their families. It is a long and lonely road.

How did your family and friends feel and respond?

Stroke changed our lives as a family forever, overnight, taking away my mobility, independence and ability to work. It left me having to rely on others to eat, wash and dress simply to do everything for me for a great deal of time,

My most recent and exciting task will be revealed on World Stroke Day, Take a look on my website www.sasfreeman.com and Sign Against Stroke website www.signagainststroke.com

Wishing all survivors a good recovery, from someone who understands,

A Fellow Survivor and Mentor, Sas