9th January 2024 – My Heart Breaks

It was my pleasure to present to the Kent Surrey and Sussex Learning Disability Community Forum on Friday 1st December 2023. I firmly support the efforts of those present to support people with a learning difficulty to live healthy, safe and fulfilled lives. I was delighted to be able to launch the Beyond Words latest book Loving Babies.

Professor Sheila Baroness Hollins – Emeritus Professor of Psychiatry, St George’s University of London, Founder and Chair, Beyond Words, Crossbench member, House of Lords. 

My Heart Breaks

Hospitals are where we go when we are sick, they are places to ‘fix’ things that have gone wrong; to live healthy lives it is important that our home lives are healthy and that we are taking care of our mental health too.

In November 2023 my report on the use of long-term segregation in mental health settings was published. It’s called My Heart Breaks: Solitary confinement in hospitals has no therapeutic benefit for people with a learning disability or autism. The Independent Care (Education) and Treatment Review (IC(E)TR) programme reviewed the care of 191 people who were detained in long-term segregation during a four-year inquiry. At the time of publication, 48 of the 114 people reviewed in the second phase had moved out of long-term segregation, but only 7 had been discharged from hospital. We found a lack of urgency in addressing the many issues we identified, and the panel recommended a stronger focus on prevention. Preventative support needs to be personalised for each person and their families.

The brief of professionals is to support people with learning disabilities to live healthy, safe, and fulfilled lives, to identify things that are going wrong as early as possible and not to wait for a crisis. The BELONG Manifesto and new approaches to Social Prescribing and community connection can help everyone to achieve this.

The BELONG Manifesto was jointly produced by Access All Areas and Beyond Words. It is a living manifesto for a better life for people with learning difficulties. It encourages everyone to

B = Be active and be healthy

E = Enjoy our friends and family

L = Love ourselves

O = Ordinary things (like choosing where we live, and what we do)

N = New things

G = Give something nice

Let’s help people to connect better in the community, and to address these 6 key things in the BELONG manifesto. Research shows that pictures help us to decode words, to remind us what we already know, and to reflect on what might happen next. That’s why Belong Words co-creates stories in pictures with people with learning disabilities to learn about things that happen in their lives.

How about joining a healthy living group or a book club, or just getting access to a specific book relevant to you. Better choices, healthy living, healthy relationships and timely support all help to avoid hospitalisation.

Beyond Words stories can be read in a group or in a 1:1 setting. You can use them to check understanding, think about saying yes to screening and support a healthy lifestyle. There’s a story for almost every scenario! The latest book in the series is Loving Babies. And it sends parents the message that “you can” and that they have equal rights to access maternity care as their peers.

Beyond Words can provide training and all the resources that you will need to set up a Book Club in your community.  YES, it’s free!

Lots of free health resources can be found on the Beyond Words website.

Many people understand pictures better than words. Why not download the free BWStoryApp to quickly find a relevant health or social story in pictures on your phone or electronic device. These stories mean you can make reasonable adjustments when you need them. Ensure more people live healthy, safe, and fulfilled lives and remain out of institutional care.

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