Beyond Words to create 300 new Book Clubs for people with learning disabilities

“I think Book Clubs are brilliant. The books are good, the people are good and you make new friends as well! It makes me feel good to do Book Club.” – Julie Anderson, Book Club co-facilitator.

This World Book Day, pioneering visual literacy charity Beyond Words is launching their ambitious new Book Club in a Box project, aiming to create 300 new Book Clubs for people with learning disabilities by 2026. The Book Club in a Box is a free pack of books and materials that will enable people, charities and organisations to kickstart a Book Club in their local area.

Beyond Words Book Clubs are a safe space for people with learning disabilities to make friends, have fun and talk about the issues that affect their lives. They use Books Beyond Words, a series of word-free, age-appropriate picture stories that explore a huge range of topics, from relationships and building community to trauma and mental & physical health. By reading what they see in the pictures as a group, members build a story prompted by the images and informed by the their experiences and feelings.

The difference Book Clubs make to people with learning disabilities is life-changing. Julie Anderson, a co-facilitator of two Book Clubs and who has a learning disability herself, said:

“It’s been really good for me. You meet new friends, but I met an old friend I hadn’t seen for 20 years through my Book Club, too. One of my Book Clubs is even international – we have one person from Finland and one from Scotland. They came to visit one day when it was on Zoom and then stayed. The people that come say the Book Clubs are friendly and they like doing them.”

Julie is also the co-author of The Book Club, a word-free picture book included for free with every Book Club in a Box. All Beyond Words books are produced with people with learning disabilities, and often trialled by Book Clubs, to make sure they are accessible for a wide range of individuals.

Thanks to generous funding from the National Lottery Community Fund, the charity has been able to develop the free box of resources. It can easily be sent out to organisations and individuals who want to set up a Book Club in their local area. The boxes include 30 Beyond Words books, guidance on setting up your own club, promotional materials, member badges and lanyards and more, and is completely free of charge to anyone in England.

Librarian Aisha Affejee has overseen the development of a huge network of Beyond Words Book Clubs across Kent Libraries over the last 12 years.

“I think they’re beautiful. They are so unique – and they work to welcome everyone. There is not one person that I know that’s gone to one and said I don’t want to do that. Everybody always enjoys them so much. Not only do the Book Clubs provide the space for people with learning disabilities to have fun and make friends, but they also bring them into contact with their communities, breaking down barriers and building real connections.”

Organisations and individuals can request a kit through Beyond Words’ website (www.booksbeyondwords.co.uk/bciab) or by contacting the charity via bookclubs@booksbeyondwords.co.uk. Creating a Book Club is easy once you have the kit – all you need are the people who will attend, a place to host it, and to read together.

To celebrate the launch of Book Club in a Box, Beyond Words are giving away ebooks of their The Book Group book for the month of March. Visit www.booksbeyondwords.co.uk and use discount code BOOKCLUB24 to get your free copy.

Beyond Words have been creating word-free stories about real life for over 35 years. Pictures are often better than words to tell stories about our relationships with other people and ourselves, especially when things are going wrong. With the new Book Club in a Box project the charity will be able to support more people than ever before.

"The student trainers have blossomed," - Book Club Co-training

A guest blog all about our Book Club training sessions from our own Community Development Manager, Lucy Alexander.

I had my first experience of Beyond Words Book Clubs during lockdown. A number of our Clubs had moved online and the members were meeting on Zoom, which was a technological shift for us all. The novelty of that really added some fun – especially when the facilitator changed their background to the seaside or the pub! These features are now so familiar, but what has never changed is the joy that comes from taking part in a Book Club. No matter which book we read or what topic we discuss the warmth and social connection in the group is unbeatable.

At Beyond Words, I organise and facilitate Book Club training sessions - but it isn’t just me! I have Co-Trainers from within the Beyond Words team like Nigel Hollins, Beyond Words’ Co-Founder and author. More than this, we work with students from the City Lit’s Centre for Learning Disabilities Education. Eight students have signed up to co-train with us. We have all been working together for about a year.

Book Club trainees come in from various organisations; colleges, advocacy groups, health and social care providers and more. They come to hear about how our Book Clubs help people to make friends and have fun, as well as how they can set up their own. We give them a full experience of how a Book Club feels, inviting them to take part in a Club in action We take turns to tell the story we see, listen carefully to each person as they read the picture in front of them, hear how the co-trainers support each other to have their say and show how the characters feel as the story unfolds. 

A recent attendee commented that it made all the difference coming to the session: “You really get the ethos of a Book Club and you get to feel the atmosphere”.

What really touches me about our sessions is how the student trainers have blossomed and their personalities have shone through. From stony and wary silence as they first joined the group to relaxed confidence as they enter the room and introduce themselves to new people. I see their knowledge about what is going on in their and others’ lives and concern about what matters to the other group members. The student co-trainers are confident about what happens during a training session. They make our trainees welcome and confidently explain how it works and what will happen next.

With a range of abilities in the group it is clear how much confidence and enjoyment everyone gets from our sessions – trainees and trainers alike. 

We’ve been thrilled to see the level of interest in our Book Clubs so far. Our new Book Club in a Box programme, generously funded by the National Lottery Community Fund, means that we can help up to 300 new Book Clubs start in England for free. As part of this programme, you will get to take part in our training either in-person or online and see for yourself what makes our Book Clubs so special. Find out more about how to get started.

Going to the Dentist featured in new article

We are delighted that our Going to the Dentist book has been featured in a new article published in Dental Update.

Patient-support Techniques for Treating Patients with Learning Disabilities examines the different ways dentists can use techniques to support people with learning disabilities, including using the book we co-developed with self-advocate Lloyd Page.

The book follows the story of a young man who doesn't take very good care of his teeth and visits a dentist after developing a toothache. It shows him consenting to a check-up and treatment to help him get better, as well as learning how to keep his teeth and gums healthy.

The story gives examples of a dental x-ray, an injection, drilling and filling, and also good oral hygiene routines. It is a great way of helping ease the anxieties about going to the dentist that many people experience.

Going to the Dentist is available in physical and ebook formats and included in some of our book sets. If you'd like to inquire about a bulk order, please get in touch.

CAREVIS: Covid vaccine information with ‘Beyond Words’

An academic study about the Having a Vaccine resource we produced in conjunction with the University of Hertfordshire, funded by the Royal College of Nursing Foundation, has now been published. Two of the researchers from the University of Hertfordshire have written this brilliant guest blog about their findings.

Hello, our names are Helena and Natalie and we are researchers at the University of Hertfordshire. We are sharing the findings of the research project called ‘CAREVIS: Covid vaccine information with Books Beyond Words’. We were awarded money by the Royal College of Nursing Foundation to do this work.

Our project helped develop a story to provide information in pictures about having the Coronavirus vaccine. We worked with the charity ‘Beyond Words’ and people with a learning disability to design this picture book. They looked out how easy the book was to understand.

The picture book was shared widely to people with learning disabilities and people who care for them. We asked family and friends, paid carers, nurses, social workers and other professionals who provide them with support. The book was free from a website and could be printed.  We shared the book through the NHS, the council, GP surgeries, Books Beyond Words, the Royal College of Nursing and other groups.

We then looked at how useful the picture book was.

1. We interviewed (asked questions) people with learning disabilities who used the picture book. We asked if it was helpful for understanding the vaccine.

2. We interviewed carers (family and friends), paid carers, nurses, and other professionals. We asked them if the picture book helped people to talk about the Coronavirus vaccine.

3. We looked at how many people with a learning disability have their Coronavirus vaccines  around Hertfordshire.

4. We sent out a national questionnaire (a survey) on the internet. We wanted to see if people used the booklet, and how. We sent this to people providing support for people with learning disabilities (such as nurses, doctors, social workers).

We worked with people who have learning disabilities on the project to make sure they agreed with what we did. We worked with the Purple All Stars group at Hertfordshire Council to design the picture book, and Experts by Experience. These people helped us write the research questions that should be asked. We also brought our findings to The Purple All Stars group to see what they thought of what we had found.

What did we find?

Interviews

We interviewed 35 people in total. 11 people had a learning disability. 10 people were carers of someone with a learning disability. 14 people were health professionals who look after people with a learning disability.

Nearly everyone could understand what the book was about. People were shown having a vaccine so they could get close to friends and family again. They could also start living their lives more normally again. But, the reason for why people were having the vaccine was not clear to everyone. Some people did not like the horse picture and found it confusing. Some people said photos might be better. Not everyone liked the needle pictures or the pictures of the coronavirus.      

Survey

55 people answered the internet survey.

Only half of the people had come across the booklet previously, and three quarters of the people had not used it before. People said it was helpful but there were things that could be improved in the pictures and the storyline. It was helpful for having conversations about the vaccine.

Vaccine data and planning

We looked at how many people have had the vaccine in the East of England and around Hertfordshire. By the end of December 2021:

• 67.1%, 20485 people had a booster (third injection) in East of England but around Hertfordshire it was higher: 72.34%, 4,519.

This is more than the national average of 66.1% of all adults in the UK had received all three vaccinations. Hertfordshire and local areas had one of the best vaccination rates in the UK.

 If you have any questions please contact Helena Wythe, researcher at h.f.wythe@herts.ac.uk or Natalie Pattison at n.pattison@herts.ac.uk.

The link to the academic paper is here: Evaluating the usefulness of a wordless picture book for adults with intellectual disabilities about the COVID‐19 vaccination programme using co‐production: The CAREVIS study - Wythe - 2024 - Journal of Applied Research in Intellectual Disabilities - Wiley Online Library

Beyond Words launches new picture story Loving Babies

New picture book opens conversations with adults with learning disabilities about becoming a parent

Loving Babies is the second in a series of evidence-based picture books to empower adults with learning disabilities to understand more about pregnancy and parenthood.

Beyond Words, the UK’s charity for visual and emotional literacy, has launched Loving Babies, the second in their series of word-free picture books exploring pregnancy and parenthood.

There are approximately 1.5 million people in the UK who have a learning disability – of those, 7% will become parents. But there are few resources for parents with learning disabilities. They are one of the groups most likely to report negative experiences of maternity care – feedback linked directly to a lack of clear communication and inaccessible information.

Beyond Words have been working to bridge this communication gap between parents and professionals, first creating the BMA Patient Information Award winning book Having a Baby, a picture story about pregnancy and birth, in 2022. Loving Babies follows on where Having a Baby left off, created by a team of parents and professional experts to show the everyday experiences of parenting and open conversations around it. The book shares stories about two babies and their families. We see the babies enjoying being with their parents and people they trust. We learn how parents respond to their babies cues and how good it is to feel supported as a parent.

The book can be used by healthcare and social care professionals to help talk to expectant or new parents about how to care for their babies, as well as carers and parents themselves. The conversations that develop around the pictures empower parents with knowledge of what to expect and how to listen to their baby, while offering an opportunity for professionals to provide reassurance and care that best meets parents’ needs. It is also a great resource for schools, to enable children to learn about how relationships develop between parents and babies.

During the book’s development it was extensively trialed with people with learning disabilities, making sure the story was relevant and applicable to their experiences.

Lead author Dr Kathryn Hollins explained: “Loving Babies is about something incredibly important: learning how to love and care for our babies. By creating this book we hope to enable people with learning disabilities to talk about what it is like to be a parent and to understand more about babies’ emotional needs for love and connection. Above all we wanted to communicate that it is good to share the ups and downs of parenthood with friends, family and supporters because it creates more joy and satisfaction for everyone, and especially our children.

The ideas behind picture-based stories are simple but powerful. The stories enable people to share their own experiences of parenthood and early childhood, as they did when the book was being trialled, and helps everyone to reflect on the emotional, relational and practical implications of caring for and loving babies.”

Dr Hollins (https://www.drkathrynhollins.com/), a Consultant Parent, Child and Family Psychiatrist and Psychotherapist, collaborated with artist Lisa Kopper and co-authors Dr Anna Cox (Psychologist and Researcher; University of Surrey), Michelle McDermott (expert by experience and Co-Chairperson at Thera Trust), Ali F. Jabeen (accredited parenting practitioner and specialist advocate) and the Elfrida Society Parents’ Project to devise the picture story over many months. The project was overseen by Professor Sheila the Baroness Hollins, Founder and Chair of Beyond Words.

Loving Babies is available in paperback format from Beyond Words with an eBook format to follow soon. For the month of December both books can be purchased as a set for the discounted price of £15 instead of £25. Guidance on how to use word-free picture stories is included for anyone unfamiliar with their practical application.

Raise funds for us for free with EasyFundraising

We are excited to announce that we are now registered with EasyFundraising! This means over 7,000 brands will now donate to us for free every time you use the EasyFundraising website for your shopping.

Simply sign up to the website and choose us as your cause, then search for the brands you want to shop with to begin.

As a bonus, EasyFundraising will donate £1 for every person who signs up to our cause with EasyFundraising from now until Wednesday 13 December - without you having to spend any money at all!

These donations will help us so much so please do sign up to support us. It is completely free to you and doesn’t take long.

New Peter's New Home edition brings story up to date

In 1993 Beyond Words published Peter's New Home, a picture story about a young man moving from his family home to a new group home. Now, 30 years later, we have released a brand new edition to reflect changes in society, complete with updated resources and information.

In the 80s and 90s, when Peter's New Home was first published, group homes were much larger than they are today. Now, with better understanding and improved conditions, people are much more likely to live alone or with just two or three housemates. Our story has been changed to reflect that - as well as the fact that housemates and friends may be from all kinds of different backgrounds. We were delighted that our wonderful artist Beth Webb, who drew the original pictures for the book, was able to work with us to update the art.

With the last edition published when our small charity was just beginning, some of the resources and supporting information in the book were also out of date. We've worked with experts to overhaul this section of the book, bringing it up to the modern day.

The book, while more effectively reflecting the reality of people living in the 2020s, is otherwise unchanged. The story is designed to help people with intellectual disabilities make a happy transition to a new home. Peter finds that living with his new friends is fun, but many jobs previously done by Mum now have to be shared among them. In this book Peter goes through all the traumas and thrills of getting ready to move. He likes his new home but not everything is rosy. He makes mistakes and has quarrels, but he discovers that people care and understand, and want to help him feel at home.

We hope you will enjoy the updated edition of Peter's New Home. To purchase your own copy, visit our bookshop.

Mental Wealth Festival 2023

Experience the Mental Wealth Festival 2023 with us

We are delighted to be once again partnering with our friends at City Lit to host the Mental Wealth Festival. This year the festival focuses on connections, exploring ways that connection supports and enhances mental health and wellbeing and celebrating the numerous ways in which we connect with others, ourselves, and the world around us.

The Mental Wealth Festival takes place from 9-14 October and will be offering a series of free panel discussions on topics like art, creativity, our own discussion about the power of pictures, neurodiversity and much more.

 We will be hosting two events throughout the week, including a unique opportunity to watch one of our book clubs in action. Book tickets using the links below for your chance to explore the power of pictures and how visual literacy can make a huge difference to our mental health.

Programme of events

THURSDAY 12 OCTOBER

The Power of Pictures – Live Book Club

Free to attend

Time: 11am - 12.30pm

Location: Cultureplex, City Lit

Join our panellists for a live Beyond Words book club, exploring what visual literacy is and how pictures can provoke sharing, stories and feelings. While our panel goes through a word-free picture book, our audience will be encouraged to watch and share their own insights, emotions and stories. Led by Beyond Words Founder Professor Sheila the Baroness Hollins. Book now.

Exploring Visual Literacy – Book Club

Free to attend

Time: 2pm - 3pm

Location: Mezzanine, City Lit

Join Beyond Words’ afternoon book clubs to explore the magic of pictures for yourself. Beyond Words staff and self-advocates will lead on a series of small book clubs developing visual literacy, empathy and understanding of each other through reading their picture stories.

City Lit will be running a series of free talks and other events for a range of activities focusing on mental health. Explore the Mental Wealth Festival’s offering on their website.

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.”