Remembering Paul Adeline

We are sad to report the death of Paul Adeline, an expert by experience who taught medical students in the Medical School at St. George's, University of London, for several years, using our word-free stories to teach better communication skills. He was also a coauthor of some publications including our book Looking After My Heart. As a co- researcher he helped our research teams better understand the perspectives of people with learning disabilities, and made an important contribution to research on testicular self examination which led to our book Looking After Your Balls.

As a training advisor he had a large impact on the student doctors. This was a pioneering programme and last month the government decided to make similar training mandatory for all health and care professionals to be taught about how to provide equal care for people with learning disabilities and for autistic people.

WILSON J, ADELINE P, BUNGAROO D, KHADRA A, WHITE S, BRADLEY EM LODGE K-M, HOLLINS S. (2018). Promoting testicular self-examination and awareness amongst young men with intellectual disabilities: a parallel intervention randomised study. Journal of Developmental Disabilities 23(3): 57-70

HOLLINS, S., CAPPUCCIO, F., ADELINE, P., KOPPER, L. (2005) Looking After My Heart. London: Books Beyond Words.

Surrey book club open day sees five new book clubs

On 26 April we visited Surrey to host our first open day for anyone interested in our book clubs, and are delighted to report it was a huge success. We held several book clubs over the course of the day, helping everyone who visited to understand how our books and our book clubs work.

We were joined by several organisations including Surrey Coalition for Disabled People, Surrey Choices, Active Prospects, Surrey County Council, Leatherhead Link and Cobham Link, as well as many more people who turned up and got involved.

It was so moving to witness the magic that happens when our founders, Sheila and Nigel Hollins, get people reading and talking. Seeing the light that goes on when people understand that even if they can’t read, they can take part in reading a Beyond Words story, is amazing – as well as seeing people connecting and laughing with each other.

Over the last month we have also presented the Beyond Words book clubs to all the learning disability partnership boards in Surrey. Having something simple and effective to help people with learning disabilities have better lives has gone down well with people who work for the council and NHS, particularly at a time councils are having to cut budgets.

We already have five confirmed new book clubs that will start in Surrey and many more people have expressed their interest. We will be hosting another day to start training facilitators this June, with more to follow.

A huge thank you to everyone who has helped us get our Surrey book club initiative off the ground. Without the amazing support of the Big Paddle, the Winston Churchill Memorial Trust and the Jo Cox Loneliness Foundation our work in this area would not be possible.

New book aims to transform maternity care for parents with learning disabilities

Evidence-based picture story Having a Baby launches to improve the experience of maternity care for expectant parents with learning disabilities.

We are delighted to have launched a brand-new word-free picture story aimed at improving maternity care for expectant parents with learning disabilities.

Approximately 1.5 million people in the UK have a learning disability, and 7% go on to become parents. It’s well-known that people with learning disabilities face serious health inequalities. Regrettably they are also some of the most likely to report negative experiences of maternity care – feedback directly linked to a lack of clear communication and too much inaccessible information.

To bridge this communication gap between parents and professionals, we have developed a unique, evidence-based picture story. Created with a team of parents and professional experts, Having a Baby is designed to improve communication and build trust and understanding between midwives and expectant parents.  The picture book tells the story of two couples who find out they are expecting, and what happens to them from first symptoms all the way to giving birth.

The conversations that develop around the pictures empower parents with knowledge of what to expect, whilst giving midwives the opportunity to answer questions, offer reassurance and provide care that best meets parents’ needs. During development, more than 60 people with learning disabilities and autistic people trialed the story, ensuring the pictures were easy to understand. Feedback was resoundingly positive.

Lead author Dr Kathryn Hollins explained: “It’s a simple concept but immensely powerful. The story prompts people to share their own experiences of pregnancy and parenthood, as they did during the book’s trial period, and helps to reflect on the emotional, relational and practical implications of pregnancy and becoming a parent. Every single group that reviewed the story said it would be useful for supporting expectant parents with learning disabilities.”

Dr Hollins, a Consultant Parent, Child and Family Psychiatrist and Psychotherapist, collaborated with artist Beth Webb and co-authors Dr Anna Cox (Psychologist and Researcher; University of Surrey), Milli Miller (Senior Social Worker; Adult Learning Disabilities Team); Tessa van der Vord (Specialist Mental Health Midwife) and Scott Watkin BEM (father and expert by experience) to devise the picture story over many months. The project was overseen by Professor Sheila the Baroness Hollins, Founder and Chair of Beyond Words.

Mr Watkin said of the story, “We know that so many people with learning disabilities, who do have babies, don’t always get the right support and get their babies taken away from them at birth. This is a great resource and we should be promoting it widely and letting everybody use it. There are still not enough resources out there and to have the book and the pictures to describe with no words, it makes the experience a lot easier.”

Having a Baby is available in paperback and ebook format. Guidance on how to use wordless picture stories is included for anyone unfamiliar with their practical application.

When the War Came – pictures for Ukraine

Like most, Beyond Words has been saddened and horrified by the invasion of Ukraine over the last few weeks. As with the refugee crisis in Afghanistan last year, we have been moved to offer our help where we can.

With the help of illustrator Lucyna Talejko-Kwiatkowska, we have developed a new short resource to help those fleeing the unimaginable circumstances to begin to tell their own stories and talk about their feelings. The pictures may also build understanding and empathy amongst children and adults living in countries that are welcoming refugees.

Download When the War Came.

Please share it with your networks so that it can reach as many people as possible who may find it useful.

We would like to make the supporting guidance notes available in other European languages, and we are particularly keen to hear from speakers of Ukrainian, Polish, Romanian, Slovak and Hungarian. If you would like to assist with translations, please email: hpimble@booksbeyondwords.co.uk

We also want to share with you the story of one family currently fleeing Ukraine. Katja has been in touch with our trustee Nataliya Tetruyeva, who is originally from Ukraine, to tell of what is happening in her country and how we can help Ukraine. 

Katja´s story

Katja is a singer. She has a 10 year old son and a 4 year old daughter. She has fled Obukhiv (near Kyiv) and is now in the region of Vinnytsja. Her voice is very emotional as she speaks:

“I am in a small village now, with my children. We had prepared an emergency backpack because we were ready for evacuation, because it was in the media.

I was woken up by my friend. She told me: “Take your children and escape!”. I opened the window and heard an explosion. We left at 6:00 in the morning. There were big queues at the gas stations but we did not stop anywhere. When we came close to Uman, a town in the middle of Ukraine, another driver signed at us to go back. We did not know why but turned back. After that there was a powerful explosion close to us. I started to cry. My children were very scared. We had to choose another way and now we are here.

My parents and brothers are still near Kyiv. They did not want to go anywhere. They have a basement and hide there when it’s dangerous.

The parents of my husband are in their apartment left of Kyiv. Tonight there was a huge explosion next to their house. Their windows are broken. I saw a video they sent me. I don’t know what to say…

My son told me: “Lesya (daughter) is so lucky, she does not know what is going on.” And when I hear that, I just want to cry. She doesn’t know what is going on. She is sitting in that basement, we are reading books, she thinks it is some game.

One night it was too cold to sleep in the house. I wanted to cover my son with blankets and he was woken up, and he started to dress. He said: “is it air alarm?”

There was one night when the alarm was often going. So we had to sleep in the basement. It was very cold. When we heard any sound, a door, a tractor or something else… we were so scared. We are always dressed, even at night, ready to go to the basement.

I am so angry, very, very, very, very angry. I am not sad. Very angry.

Now phrases like ‘how are you’, ‘I love you’, ‘goodnight’, ‘stay safe’ have another meaning for us.

[Lesva] was supposed to sing […] on Monday in the Kindergarten in a beautiful dress, not in the basement. Why do we have to be here? Why do we have to hide?

Sorry for my emotions…

Thank you for telling everybody about Ukraine, about us. Stay safe.”

How you can help 

Ukrainians are in dire need of medicine, food, refuge and protection. Hundreds of people, primarily women and children, are fleeing this war with few or no personal belongings. Supply chains of most essential goods are disrupted throughout the country. Almost all shops and pharmacies are closed due to a constant high alert of Russian airstrikes.

Visit https://helpukraine.center/en to learn more about how you can donate and help the people of Ukraine.

Alicia Wood to join us as our new Chief Executive Officer

A word from Alicia Wood, our new CEO...

It is my pleasure to announce that I will be taking on the role of Chief Executive Officer of Beyond Words from 1st April.

Beyond Words has always been close to my heart. Back in 1995 I worked as a psychotherapist with people with learning disabilities and mental ill health. My first experience with the power of Beyond Words books was with a client whose mother had sadly passed away. The woman seemed to have trouble understanding what had happened, constantly asking for her mum both during sessions and at home and dealing with a significant amount of distress.

I brought the Beyond Words book When Mum Died to our sessions. Slowly, she was able to understand that her mother had died. From her distress she was able to begin the essential process of grieving, in order to heal. I understood then the incredible importance of picture stories to help those who find images easier to interpret than text - what we call visual literacy.

These pictures and stories are vital to help the many of us who are visual learners to understand our own emotions and comprehend life events in what can be a bewildering world. As an autistic person who learns better through pictures, diagrams and stories, rather than written and spoken word, school was stressful to say the least - as I know it is for many children who are visual learners. Working in organisations and using health and social care services that predominantly use verbal and written communication can be confusing and overwhelming for autistic people and other visual learners, whether we have learning disabilities or not.

Beyond Words firmly believes that by using visual and emotional literacy, we have the potential to transform education and improve mental health in both adults and children. Our Feelings Groups with children in mainstream and special schools are not only improving communication about feelings but increasing their learning potential. Our book clubs with adults with learning disabilities are not only helping people to understand and communicate about complicated life situations, but are also helping people make friends and be more connected. Our refugee story has enabled refugees to talk about trauma and seek help.

Becoming the CEO of Beyond Words could not come at a more exciting time. We are on the cusp of change, moving from our previous work as a charitable book publisher to a charity focused on using visual and emotional literacy principles to enhance peoples' lives. In the coming months we will be expanding our successful book club and education programmes, bringing our unique methods to help communication and understanding to more and more adults and children across the country. If you are interested in joining us on our journey, do get in touch.

I'd like to thank my predecessor Nick Wright, who retires at the end of March, for his work with Beyond Words, we will miss him! I am also very much looking forward to working with our founder and chair, Sheila Hollins and our talented board of trustees and staff team.

Email: awood@booksbeyondwords.co.uk

Twitter : @AliciaWood___

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