Stroke survivors help others with life after a stroke

People who have experienced a stroke now have access to support through a new book, following its development by a team of psychologists and a group of stroke survivors and carers.

‘Rebuilding Your Life After Stroke’ was developed with stroke survivors in partnership with psychologists from Cardiff and Vale University Health Board and Cwm Taf University Health Board supported by Cardiff University.

The book and its accompanying materials aim to normalise the psychological effects of stroke, providing advice and support for people following a stroke while also providing tips and strategies to make life easier.

With insight from many people who have experienced a stroke, this book focuses on what stroke survivors can do, rather than what they cannot. Using exercises to help move towards an acceptance of the long-term side effects, this book delivers a positive message to help survivors of strokes live a better and happier life.

This book and its accompanying resources has been in production for 18 months and is now available in both Welsh and English.

Research by the Care Quality Commission in 2011 highlighted that services to support psychological issues after stroke were often inadequate while the Stroke Association in 2013 reported that survivors and carers can feel abandoned after leaving hospital.

The group of authors joined forces with stroke survivors and carers to develop the self help book which gives an insight into the psychological difficulties after stroke, for both survivors, and their families. The book was funded by the Stroke Implementation Group which is a Welsh Government and NHS Wales funded body.

Initial feedback on the book has been positive with one survivor saying; “Hearing from other people, finding out what they have done, how they coped, inspired me.”

The Stroke Rehabilitation Centre (SRC) at University Hospital Llandough

Tamsin Miles, one of the authors and Assistant Psychologist at the said “The physical effects of stroke are often the most obvious and understandably, have the primary focus during the initial weeks and months after the stroke. Psychological needs such as problems with mood or memory often go unrecognised and untreated.

“In Wales, we have worked with the Stroke Association to enable the resources to be available to people in need, at the most appropriate time. Experience has shown that this is usually sometime after people have been discharged from their hospital care, for example 6-12 months following their stroke. At this time, it is often the Stroke Association or GP who are most engaged with the patients.”

The group has done a lot of work to make the book accessible for stroke survivors, ensuring the content is easy to read and understand, in large font and that the format is appropriate for those with physical difficulties.

In addition, there are videos accompanying the book with stroke survivors and carers talking about the difficulties they have faced and how they cope. There are also audio exercises for survivors to download and practise.

The book can be accessed free in Wales according to need, through the Stroke Association or some primary care resources. It’s also available for purchase from Amazon or from Jessica Kingsley Publishers directly.

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Nathan Spackman

Nathan is the Operations Manager at Bro Radio. You'll occasionally find him with our street team and hosting at local events as well as presenting our facebook live videos.