New free resource Having a Vaccine launched

Together with researchers from the University of Hertfordshire, we have launched a brand new free resource, Having a Vaccine. This downloadable leaflet will help people with learning disabilities to understand the importance of vaccines and take informed decisions about their health.

The resource has been funded by the RCN Foundation and was initially launched in 2021 to develop a visual resource that guides people through the benefits and practical process of getting the vaccine against COVID-19. Now, it has been expanded to assist people with learning disabilities – and their families and carers – to have open conversations about the benefits of other vaccines for long-term health and wellbeing.

During the first months of the pandemic, Public Health England reported that individuals with learning disabilities were at greater risk of dying from COVID-19. With the roll-out of the winter booster programme starting earlier than planned due to the newly-identified Pirola variant, there remains an urgent need to encourage people to take up their vaccines, and help them understand the benefits.

The pandemic starkly highlighted the increased health risks for people with learning disabilities, but this vulnerability is a long-standing problem. Studies show that people with learning disabilities experience significant health inequalities, including poor quality healthcare that is responsible for avoidable hospitalisations and deaths.

The team behind the new ‘Having a Vaccine’ book hope that the resource will encourage people to receive other necessary vaccinations such as flu, to protect them against preventable illnesses.

Our CEO, Katie Smith, said: “Picture-based, word-free resources like these are vitally important in helping people who find visual mediums easier to understand than written ones. They allow people to build understanding of the vaccination process, as well as having open discussions about their anxieties, questions, and emotions. We are delighted to have been able to bring our approach to such a valuable resource”.

Dr Helena Wythe, Senior Research Fellow at the University of Hertfordshire, explains why this kind of resource is so important to invest in: “Thankfully, we saw a high uptake of the COVID-19 vaccine across the community here in Hertfordshire. However, it’s not just about the number of vaccines in people’s arms. It’s important that people with learning disabilities aren’t shut out of the conversation around vaccines, but understand why they are so important and play an active part in these kind of healthcare decisions.

“This is particularly important as COVID-19, and the importance of the vaccine, is no longer front and centre in the media. We hope this resource will help people to continue conversations about the importance of protecting their health, in many ways, in the long term”.

‘Having a Vaccine’ was created by charity Beyond Words who specialise in creating visual stories designed for – and co-created with – people who find pictures easier to understand than words. They use visual literacy as a communication tool to empower people and remove barriers to understanding.

Staff at the University of Hertfordshire’s School of Health and Social Work ensured the book meets these aims by conducting an evaluation of its impact. This included interviewing and surveying people with intellectual disabilities, carers, and health/social care professionals, as well as mapping resource distribution and vaccine uptake data. The research resulted in refinements to the resource, for example how to address the issue of needle phobia through imagery. One participant said:

“‘We need to promote what people with learning disabilities can do… not what they can’t do. I think that booklet’s going to save many more lives”.

Deepa Korea, RCN Foundation Director, said: "The COVID-19 pandemic highlighted alarming health disparities, especially among individuals with lived experience of a learning disability, who faced a mortality rate 3.6 times higher than the general population. Addressing these inequalities is a top priority for the RCN Foundation and we are proud to have funded this resource, designed to not only aid those seeking the COVID-19 vaccination, but also individuals receiving other vaccinations and immunisations administered via a needle”.

The resource was launched at the RCN Foundation on Friday 22 September and featured a book club reading of the resource, as well as performances from Hertfordshire-based Purple All-Stars who helped to develop the book.

Remembering Dorothea Duncan

Beyond Words has been deeply saddened by the death of our former managing editor and trustee, Dorothea Duncan. 

Dorothea started with us in 1996 after she was recruited to become the managing editor of the Books Beyond Words series at St George's University of London. She stayed with the series for 18 years until retiring in 2014, but remained with us as a trustee, offering pro-bono advice to Beyond Words staff for many years.

Former and current Beyond Words staff, authors and trustees came together to pay tribute to her at her memorial service in June.

Founder and Chair of Beyond Words, Sheila Hollins, said: "Dorothea had a remarkable set of skills including counselling and management from her time with an American healthcare company, and invaluable editing and publishing expertise from her years at Puffin Books, part of the Penguin group.”

National Lottery Community Fund award sets off new Beyond Words project

Beyond Words is excited to share that, thanks to a generous new award from The National Lottery’s Community Fund, we will be starting an ambitious new project to create 300 life-changing book clubs across the country.

Our Book Club in a Box project is the start of making our book clubs as accessible to create as they are to join. We know lots of people love our book clubs and want to bring them to a library, community space or group near them but aren’t sure where to begin. To help, we’ll be creating a book club starter kit featuring everything they need – from books to posters to start-up guides, as well as personal help from our small team – that can be posted out anywhere in the country.

Beyond Words book clubs change lives. By putting our word-free picture books in the hands of people with learning disabilities, dementia, refugees and others who find written language challenging, we empower them to tell stories in their own words. Book clubs are spaces in which people make friends, have fun and talk about the issues that affect their lives. For people whose voices are often spoken over, enabling them to tell their own stories on their own terms is incredibly powerful.

We’ll be working hard on our Book Club in a Box project over the coming months and we look forward to sharing our progress with you as we develop and launch our project. Make sure you receive all the latest updates by signing up to our monthly newsletter.

A huge thank you to The National Lottery Community Fund for their generous funding of this project.

Welcome to our new CEO Katie Smith

We are thrilled to announce the appointment of Katie Smith as Beyond Words new CEO.

Katie joins us from her previous role with the Southwark Schools' Learning Partnership and Dulwich College. She has also held senior roles with The Food Chain, the Neurological Alliance, and the International League of Dermatological Societies. Katie brings a broad set of skills and experience in the education and charity sectors and her passion for visual literacy will help us spread the news about Beyond Words and make sure that more children and adults can benefit from our word-free stories.

We would like to thank Alicia Wood for acting as Interim CEO since February 2022.  She has taken care of Beyond Words through a period of turbulence following COVID and has helped the organisation set out and begin to deliver our new strategy. She will continue as a consultant for a period to support Katie in the development of our membership model.

Beverley Dawkins has worked alongside Alicia as interim Operations Director for the last six months and will be leaving us at the end of August. Beverley´s knowledge and experience has been invaluable in supporting us during this time and we are extremely grateful for her commitment to Beyond Words.  

Katie starts with us on the 11th September. Over the coming months as Katie settles into the role, she will get around to meeting our many friends, colleagues and partners. In the meantime you can email her to get in touch. 

Latest Beyond Words books launched as ebooks

Earlier this year we launched the latest three titles in the Books Beyond Words series: Max Goes for a Check-Up, Lucy Goes Riding and When the War Came. We are pleased to announce that all three of these titles are now available from our bookshop as ebooks.

Find all three of our latest ebooks here, or read more about them below.

All three books have no words and are entirely composed of pictures that can be read in an individual or a group setting. They cover topics ranging from what children can expect from a visit to their GP, to a look at the war in Ukraine and the lives of refugees, to riding horses. They are linked by the common thread of relationships, showing families and friends coming together to support each other.

When the War Came is an expansion of Beyond Words’ previous short resource on the war in Ukraine. Continuing their work with Polish artist Lucyna Talejko-Kwiatkowska, they have produced a full-length picture story about a family from Ukraine who is forced to flee their home. The book is aimed at helping those fleeing unimaginable circumstances to begin to tell their own stories and talk about their feelings. It may also be useful to help build empathy and understanding amongst children and adults in countries welcoming refugees. As the story has no words, it can cross language barriers and be used in a wide variety of contexts. This book is dedicated to the people of Ukraine.

Max Goes for a Check-Up is the latest Beyond Words book aimed at children and young people. Going to the doctor can be worrying. For children going for the first time or who are shy or nervous about the experience, it can be hard to talk about their thoughts and feelings. This book shows Max and his mum going to the doctor and explains what happens to them there. Feelings, information and consent are all explained.

Lucy Goes Riding is a brand new book all about the joy of shared activities and making friends. It shows Lucy trying out horse riding for the first time, making new friendships and strengthening old ones. This story was developed in memory of our colleague and friend Carrie Dunton, who died in 2021. The importance of friendships and horses were just two of the many things that mattered to Carrie. We miss you Carrie and are sure this short story will give pleasure to many people.

New prices for our book range

For the first time we have had to raise the prices of our books. From today, the costs of our full-length size books will go to £12.50 each, while our short books will go to £10 each.

When we first started selling our books in 1989, we made a commitment to keeping our costs low and our work affordable for the many people it could benefit. Since then, for over 30 years, we have kept our book prices the same despite rising costs both in printing and in our co-production process.

Our books are special. They go through many months of drafting, testing and trialing to make sure their stories and pictures are as beautiful, understandable and universal as they can be. They take 12-18 months of a rigorous, in-depth process involving experts in their subject field and with lived experience to produce.

With costs rising, it is necessary for us to introduce this pricing change to ensure we can keep producing our books and resources to the high standards that make them special.

Congratulations to all our Book Club Training graduates

Earlier this year Beyond Words started a brand-new, free training course with our friends at City Lit in London to equip people with learning disabilities with the core skills to be co-trainers on our book club training programme.

The course took place over the first six months of the year and welcomed both students from City Lit and other organisations to take part.

We are delighted to announce that our first set of trainees has now celebrated their graduation. Nigel Hollins, one of our most decorated co-authors and a co-founder of our charity, presented the seven new graduates with their certificates at their base in City Lit, recognising each of the awardees as certified Beyond Words Co-Trainers.

Some of our new graduates have decided to set up their own book club at City Lit, while some will also be setting up a book club at an organisation they attend near them. Learning from a group of Beyond Words trainers including people with learning disabilities, they have found out:

• How they can start a book club

• How they can use our books and images to improve the mental and physical health of people with learning disabilities and autism.

• How they can help people to make friends and have fun through book clubs

• How our books can be used in education, social care and health care with young people and adults with learning disabilities.

Congratulations to all our new graduates. We look forward to seeing your book clubs grow and thrive!

Find out more about book clubs near you.

"How do you tell your story of escape from your war-torn homeland?"

Our book When the War Came, about the war in Ukraine, was illustrated by a Polish artist, Lucyna Talejko-Kwiatkowska. To bring the book to life, Lucyna spoke to Larysa, a Ukrainian refugee living in Poland. Larysa tells us about the war, her experiences and the book.

By Larysa Gromak

It has been 475 days since the tragedy hit our country, and it is still keeping the nation and the world in great distress. The enemy is committing new crimes in Ukraine on a daily basis. Women and children, who have managed to escape the atrocities, continue to live, learn, work and simply breathe, in Poland and other countries which have offered refuge since the start of the war.

As time passes on, one comes to realise that everything is relative. Each of us has a separate way of measuring happiness and terror. One often thinks that “it is impossible, it cannot be happening”... One seems to be incapable of surviving even more fire, fear, darkness and cold. But as the enemy creates more suffering, Ukrainians still keep fighting, working, rebuilding, and somehow, they have become used to such a life. This is how it goes in my home-town of Nikopol or in any other village, town and city in Ukraine. I see how people unite in their efforts to help each other in every possible way. Those who are staying abroad  suffer as well, but from a distance, with dignity.

A great number of Ukrainians and Poles continue to volunteer in different fields of life. They are active, conscious and united in their response to the atrocities and mass killings of the Ukrainians. From the beginning of the war, Poles have shared their homes and possessions. They have offered housing, food, clothes and heartfelt support. This is a very precious quality. It strengthens us, makes as more human. And deep in our hearts, we hope that victory will arrive soon because good has to win over evil. This is the world we believe in and we are trying to build.

When I came to Poland at the beginning of the war, my daughter Anastasia asked me, whether I could share my experiences with a Polish artist who wanted to document it all in drawings. How do you tell your story of escape from your war-torn homeland? How do you share your emotions and put them into words coherently, for the other side to understand?

Since then, Lucyna and I have been meeting  to discuss the changing perception of the war. We exchange our views on women who become ever so stronger in new environments. They work, they learn Polish, they raise children, they take on new jobs, they support each other and the elderly in need.

The artist has shown in a very subtle way the emotions, the experiences of living in a foreign country as well as the changes happening in Ukrainians who stayed in Poland following the outbreak of the war. We have to learn Polish, work, teach children, cooperate with each other, grasp the new culture and, at the same time, look after our own traditions and support our soldiers. Our main duty is to support those who fight for our freedom, the wounded ones and those who stayed behind, those who experience all the daily difficulties of the ongoing war. While living through all the atrocities taking place in our country, we are also witnessing an incredible resilience in our women. It is ironic to observe that our society has united during such circumstances.

The creation of this book combines, in a unique way, the experiences of life, power and talent, as well as tragedy and art. I am proud to be a part of this project where I am able to share the current experiences of the Ukrainian nation. Thank you very much to all those who have shown as much support as possible. This will all lead to Ukraine regaining her freedom.    

"It is vital to understand the emotions of refugees who flee from a war-torn country."

By Lucyna Talejko-Kwiatkowska, artist of when the war came

In order to create the first five drawings for the book entitled “When the War Came”, in March 2022, I met with Larysa, the mother of one of my students, Anastasia. Larysa came to my city from the town of Nikopol, in Ukraine. When we met, each of us spoke in her own language: Larysa knew a little bit of Polish from her daughter and I remembered a little bit of Russian from school. This conversation was difficult for both of us. Larysa told me about her long, horrific trip to Poland. I was terribly overwhelmed with the war breaking out so close to my home. I often struggled to catch my breath, while thinking about war next door. My parents often recalled the second World War. They kept telling me about it when I was a child. I still remember the fear... And now, in order to draw and depict the emotions of Ukrainians, I had to feel it all again in my body.

I based my drawings off of the stories shared by Larysa, photos and conversations with other Ukrainian and Polish ladies. During those challenging times, all my friends continued to help and support Ukrainian refugees. Meetings with Larysa and working on the book, helped me survive the first few months of this war. I showed her all the pictures and she commented on them. Sometimes she asked me to present something differently. We soon became friends with Larysa and my family rented her an apartment. We live close to each other. She invited me to join her fitness classes for Ukrainian ladies. We often speak about the tragic events in Ukraine, but not always. I know what her son looks like, he lives in Kiev. I saw pictures of the broken windows in her house in Nikopol.

Some of the members of Larysa’s family have already returned to Ukraine, like the many others. Her daughter has already committed to stay in Poland and Larysa is also planning to live here for now. She is studying Polish, searching for a job, and learning about a new country and its people. I greatly admire her. Larysa’s courage comforts me. Oftentimes, she supports me, offering words full of hope. I wish that her longing for peace in Ukraine comes true.

It is vital to understand the emotions of refugees who flee from a war- torn country. It is challenging even if we fully stand beside them in support. I hope that our book can help in this process of building an understanding while offering an insight into both the events and the emotions.

One year on from A Refugee's Story

By co-author Valerie Sinason

One year ago, with a committed Books Beyond Words team, we brought out A Refugee’s Story. Little did we realise more of the world would be on the move from trauma, dispossession, exile than at any other time. 

The 1951 Refugee Convention defines a refugee as: “someone who is unable or unwilling to return to their country of origin owing to a well-founded fear of being persecuted for reasons of race, religion, nationality, membership of a particular social group, or political opinion.”

A refugee is someone facing loss at the deepest level, losing everything that was known and familiar, losing home, work, sights, smells, loved ones only to face too often further fear of death, racism, poverty, unknown language. At Books Beyond Words we are focussed on art telling a story so that children and adults with a learning disability and/or another language can have access to feeling they are seen and understood. 

Having been involved with Professor Hollins since the beginning of Books beyond Words, I was determined that this subject should be covered. As well as realising clinically that refugees with a learning disability had even more to bear, I had a personal reason. 

At the age of 75 I was able to properly realise that all my grandparents had been refugees from Russia and Ukraine and that my maternal grandmother, my loved Nanna, who lived with us until she died, had a mild disability through trauma. With Books Beyond Words you provide a possible story line and it is transformed by the knowledge of different team members and then the artist makes our knowledge become visible. We trial it with different people, alter story and art and then it is ready, shaped like a beautiful sculpture by all who have been involved in it. 

And a woman in Kiev, working with adults with a learning disability right now, told me she had used it and it helped. I have the chance to thank my brave grandparents for making it to safety, thank the UK for receiving them and thank Sheila and books Beyond Words for understanding.