Co-production | Include.org

Human rights are for everyone!

The Include Champions group worked with Folusho from Liberty – the human rights organisation – to make Easy Read information available to all.

The topic was Talking to The Police. We asked Folusho to tell us about this collaboration from her perspective.

What’s your mission?

I work for the Advice and Information Team at Liberty, a human rights organisation. The Advice and Information team’s mission is to help people understand their human rights. We do this by answering questions people send to us about their human rights through our helpline and written advice service. We also publish online articles about people’s rights, and deliver training to community groups.

The law is complex and tricky to understand so we try to break down topics to be as simple as possible.

We realised that we needed to make our information more accessible. Some people find it hard to read and understand things. Some people are still learning English.

We don’t want these people to be missed out. Human rights are for everyone!

https://www.libertyhumanrights.org.uk/advice_information/talking-to-the-police-easy-read/

Why did you reach out to Include and decide to work with The Champions?

We wanted to create a resource to explain that you don’t always have to speak to the police. This was a tricky topic to explain, because there are many ‘if this, then that’ scenarios in this area of law.

We had written some information, but we felt we had some gaps in our knowledge on accessible writing. We know that many people find it hard to read long blocks of text.

I researched Easy Read, and I learned that it’s a way to use pictures and short sentences to set out information. I wanted to give it a go, but have it checked by professionals to make sure the resource was as useful and accessible as possible.

I really wanted an Easy Read provider who worked with people who use Easy Read – and Include was perfect. The Champions group is made up of people who use Easy Read themselves. They give feedback on drafts and help shape the resource.

I wanted a true collaborative approach through co-production. I knew Include would be a great fit because of their amazing work around accessibility.

What did you discover from meeting The Champions and being part of the Easy Read process?

I met the Champions on Zoom, and we went through what I wrote. They told me their thoughts: what was easy to understand, and what needed rephrasing.

Their questions prompted me to deeply think about the law, which can be unclear sometimes.

The Champions helped me explain this ambiguity as simply as possible, which also made me refine my own understanding.

Claudia, Alix and Penny all taught me things too. I learned about repetition, and working memory, and I use in all my writing going forward.

How is the Easy Read being used? What hopes do you have for it’s impact?

Its only been out for a short time, but we hope to send this resource to many different groups. We didn’t just send it to disability focused groups – but any group that does community organising, across a range of different backgrounds and walks of life.

Line drawing of a policeman talking notes while asking name and address? text reads: The police can ask your name and address if they think you are behaving in an antisocial way. Second line drawing of two uniformed police talking to two members of the public. text reads: You do have to tell the police your name and address if they police believe you are acting in an antisocial way.

Easy Read is accessible to a wide range of people. As well as disabled people and non-English speakers, there are lots of people who benefit from this – people who are quickly scrolling on the tube, people who need to remember key information quickly.

I hope Easy Read makes people feel more confident knowing their rights. They might find it easier to remember since the pictures are there too.

I also hope it makes people think, “How can I make this information easier for more people to understand?” and be creative.

What is your personal take-way from this collaboration?

Image description: Folusho smiles at the camera. She has brown skin, shoulder length brown hair and glasses. She’s wearing a dark green turtleneck. End of image description.

Accessibility is so important and there is always more to learn. People’s brains work in different ways. Instead of looking at this as a difficulty, I now embrace it as a challenge.

I now say to myself, “Can I break this topic down even further? What exactly does this word mean, and can I use a simpler one? Would I remember this in a stressful situation?” If my answer is no, I go back to the drawing board and try to address these issues.

I have become more flexible and open to my ideas changing in light of new information. I’m glad Alix and her team were honest about what didn’t work, because hopefully that means more people find the resource useful!

For people who are considering using Easy Read – do it! The value of these sessions have gone far beyond the initial resource and I am very grateful to Include.

Find the Easy Read that came from this collaboration here: Talking to the police – Easy Read – Liberty (libertyhumanrights.org.uk)

A line drawing of a police officer taking notes while talking to a member of the public. Title Talking to the Police - a guide to your rights when talking to the police
Penny Sims
Penny Sims
Communications, Fundraising and Partnerships Lead

Stress Awareness Month

Stressful Statistics

April is stress awareness month. Many people take this to mean work-related stress – and that is an issue. 1.8 million working people suffering from a work-related illness, of which 875,000 workers suffer work-related stress, depression or anxiety.

Source: Britain 2022/23 https://www.hse.gov.uk/statistics/overview.htm

Group of professionals including people working in the Social Care sector

The CQC’s state of care report highlights that Social Care Workers are stretched and stressed by lack of resources and high levels of demand.

Meanwhile, among unpaid carers, who are estimated by the UN to meet 75 – 90% of care needs, carer burn out is also real. More than three quarters of all carers (79%) feel stressed or anxious, half (49%) feel depressed, and half (50%) feel lonely.

Source: The State of Caring Survey 2023

Communication skills and stress can be related. Sometimes when stressed, our ability to process or produce spoken language is impaired. And if it isn’t easy to communicate or if we are not understood, it is stressful. All of Include’s projects and training aim to build communication bridges, so that this stress is reduced for everyone involved.

Stroll and Sign project participants smile and wave at the camera

We welcome carers and support workers to our projects and they tell us that things like our Stroll and Sign wellbeing walks help them to feel less isolated and less stressed as a carer.

Being in nature with a supportive group boosts everyone’s mental wellbeing.

You can watch our video about How our Stroll and Sign project helps people. Why not come and join us?

Honest Insights

We asked a friend who is a full-time carer to share his experiences of stress and ways to help manage it. Here is what he said:

“I have always used the word stressed and stress for as long as I can remember, I’ve always felt anxiety socially, About everything really, being late, thinking that I need to be doing something better with my life or thinking that something bad might happen. In December 2020 something really bad did happen, my son had a brain tumour removed and then suffered from severe complications that meant that he needed me to be with him all day every day to care and help him to rehabilitate.

So, I learnt that what I was worried about before paled into insignificance compared to this new life. The stress of keeping someone alive 24/7, the stress of making sure they get the right calories, the right water intake, that they don’t have a seizure, they don’t hurt themselves, to try and get them out into social situations when they don’t want to get out of the car, the dread of impending scans and discussions with Drs to know if the tumour comes back, and a million more tiny stress points in the day while trying to operate as a normal family with my wife and daughter as well.

How do I deal with stress? Well, it is there and it won’t go away and most of the time I can handle it with the occasional ‘dummy spit’ where I have to take a few minutes to breathe. I ensure that I exercise at least 3 times a week, playing Football with a team helps as that is a great place to talk to others who are sometimes going through tough times themselves, but also to talk about Football and tactics that our crumbling bodies probably can’t execute come match day. I also go for a walk around the block on evenings where I need to get my thoughts straight.

My son is currently at a Neuro rehab centre in Surrey with a packed schedule of therapy and School sessions, so I am flat out getting him ready, getting tosessions on time, feeding him etc etc, after our first week we reviewed everything with the team here, and one of the key goals of this placement is for me to look after myself. Easier said than done, but very important because if I suffer then everyone suffers. It’s hard to let go, but I’m doing it step by step, and my son is responding well to me taking a step back at times. I’m also finding it really useful to chat to others who are in a similar situation, there is no agenda, we are all in tough situations and can just talk straight to each other. So, another way to manage stress is to speak to others, understand where you can step-back and that you may not be that vital all the time – the World will still turn without you.

It’s difficult to manage stress. Try to find time away from your day to day to do something you enjoy, chat to people wherever you are, walk round the block, maybe get some professional help if you feel ready, listen to your close ones if they say they are worried about you, there’s always some way to solve a part of the problems you are facing.”

Other things that can help

Sticky notes on a board with handwritten comments about how people relax when stressed

We asked some of our Include Choir members, support workers and volunteers to share how they manage their stress. Here are some examples of what they said:

“I relax by gardening, playing guitar and reading.”

“I like to talk to someone, listen to music or watch a film to cheer me up”

“Headspace and yoga. Listen to music. Exercise.”

“Music”

“Turn off notifications on my phone!”

“Listen to music”

“Go for a drive”

“Deep breathing exercises”

“Take a long bath”

Easy Reads

Our Champions Group (people with lived experience of communication needs) has produced two relevant and helpful Easy Read resources – one about mental wellbeing and the other about physical wellbeing.

You can download them for free here:

Healthy Mind download LINK

Healthy Body download LINK

There are audio versions on SoundCloud too:

Healthy Mind

Healthy Body

Penny Sims
Penny Sims
Communications, Fundraising and Partnerships Lead

Breaking Down Barriers – there’s an app for that!

When healthcare information is accessible and understandable for all, it can literally save lives.

Alix Lewer, Founder and CEO of Include and The Include Champions helped to develop an accessible version of the CardMedic app…a tool that breaks down barriers to good communication in healthcare.

It’s a partnership that we are really honoured to be part of. We wanted to know a bit more about what the people at CardMedic thought, so we asked!


Rachael Grimaldi – Co-Founder and CEO of CardMedic

What is CardMedic’s mission? 

At the point of care, the inability to communicate is the largest single contributor to health inequalities, and patients with additional communication needs make up nearly 50% of the population.

CardMedic’s mission is to break down communication barriers between healthcare staff and patients by making healthcare information accessible and understandable for all.  

We’re committed to inclusive communication and believe in acknowledging and accommodating everybody, regardless of their communication needs. Our aim is to provide intuitive and cost-effective technology that empowers clinicians and patients to communicate quickly and efficiently across any barrier, enabling more effective delivery of care, reducing health inequalities, and improving patient outcomes.  

Why did CardMedic want to work with Include?  

We were really keen to work with Include because we share their mission to break down barriers and create a more inclusive world. At CardMedic, we recognise that accessible information is vital for ensuring equitable care delivery, so we couldn’t imagine a better partner.

Alix Lewer’s expertise as a Speech and Language Therapist, as well as Founder and CEO of Include, made it a no-brainer. She and her amazing team have been invaluable in helping us improve communication in healthcare and increase our understanding of the challenges people can face.  

Together, we’ve been able to develop innovative solutions and resources that empower us to think differently about how we communicate. Particularly in a healthcare setting, we’ve learnt how to effectively communicate with patients with diverse communication needs and improve health outcomes for underserved populations.

Our shared vision of inclusivity and accessibility made us confident that partnering with Include would help us work towards a more equitable healthcare system for all. 

How did the partnership help your project? 

Alix is incredibly knowledgeable in the accessible information space and about the Mental Capacity Act (2005). She understands that inclusive communication means recognising and respecting all forms of communication–not just the written and spoken word.

Drawing on her knowledge of inclusive practice in health and social care, having worked as a Speech and Language Therapist in the NHS, Alix contributed to the initial development of an accessible version of the CardMedic app. Include’s lived experience Champions Group also continues to work with us to review our content regularly and provide feedback about accessibility.  

Our partnership with Include has helped us refine our content to ensure that it’s as accessible as possible to individuals with diverse needs, including those with learning differences, visual and hearing impairments, and language barriers.

Alix’s expertise has helped us convert our library of scripts covering a vast array of clinical specialties and sub-specialties into Easy Read, at a reading age of 6 or under.  This essentially means it is accessible to many more people than traditional information would be, both children and adults.

What would you say to others thinking of partnering with Include? 

For anyone working in the accessibility, language, and communication space, they would be remiss not to reach out to Include! Include promotes inclusion and wellbeing, empowers people with additional communication needs, and ensures that they have equal access to services, facilities, and opportunities. They do a fantastic job of collaborating with businesses, educational institutions, and other organisations to help raise awareness of accessibility and provide practical solutions for inclusivity.  

Include also offers brilliant training and consultancy services to help organisations improve their practices by making them more accessible. By partnering with Include, you’ll gain valuable insights, guidance, and resources to enable you to create a more inclusive environment.

The team are so friendly, and their expertise will help you address communication barriers and send out a powerful message about your commitment to inclusivity. All in all, we’d highly recommend partnering with Include! 

Get in touch with Include, please email : info@include.org

More information : https://www.cardmedic.com/

(She won’t tell you herself, but while we are here and talking about healthcare…Alix won a Royal College of Speech & Language Therapists’ Giving Voice Award for voluntary work with The Mental Capacity Act Clinical Excellence Network – Raising Awareness of Supported Decision Making at End of Life.)

Penny Sims
Penny Sims
Communications, Fundraising and Partnerships Lead

Adjusting for Sensory Needs

Free Easy Read

This week is National Inclusion Week which celebrates inclusion and encourages taking action to create inclusive workplaces.

One of the ways that employers can be more inclusive is to think about the sensory experiences of their employees. We found an interesting article on LinkedIn which talks about things like lighting adjustments, sensory break spaces and noise control. 

Of course, sensory considerations are not unique to the office environment. People who experience their senses such as smell, noise, or textures in heightened or muted ways may need reasonable adjustments to be made wherever they are.

Many theatres are now good at taking sensory needs into account. For example, The Lyceum has a scene-by-scene Sensory Synopsis of The Lion King available on its website. In addition, during relaxed performances the theatre turns off noisy hand-dryers in the toilets and provides alternative ways to dry hands.

Being in a healthcare setting can lead to heightened experiences – so it’s important that healthcare staff and those designing healthcare settings take sensory needs into consideration and act on requests for reasonable adjustments.

We had the founder of The Sensory Projects www.thesensoryprojects.co.uk  Joanna Grace as a special guest at one of our Champions sessions. She talked with us about the reasonable adjustments that autistic people may need to help communication in a healthcare setting.

Many thanks to Jo for kindly sharing her own personal insights of how her autism affected her experience of healthcare during pregnancy and birth.

The NHS’s Sensory Friendly Resource Pack (Free here: NHS England » Sensory-friendly resource pack) describes 3 types of sensory experiences that people with autism may experience:

  • hyper-sensitivity:
    • extreme over-reactivity to sensory input
  • hypo-sensitivity:
    • extreme under-reactivity to sensory input
  • sensory-seeking:
    • unusual interest in aspects of the sensory environment.

The Include Champions have produced a new FREE Easy Read document to share about reasonable adjustments for sensory needs. 

Download it free here: 

Listen to it on SoundCloud

Penny Sims
Penny Sims
Communications, Fundraising and Partnerships Lead

Vote like a Champion!

Ahead of the local elections on Thursday 4th May, The Include Champions Group has created a FREE Easy Read guide to voting for people with communication difficulties.

Here is the audio to listen to the guide: https://soundcloud.com/include-org/voting-like-a-champion?

The My Vote, My Voice group have accessible information about voting on their website too.

Our Champions have been sharing their experiences:

Hannah’s experience

During Covid times, Hannah, one of our Champions voted by post. But gradually she has decided to go to a Polling Station.

She knows she can ask for help from the people working there but Hannah has become more confident over time about being independent when voting in person.

First, she talks about it with her family and thinks really carefully about who she wants to vote for. She now votes independently.

Planning Ahead

The Include Champions pointed out that if you live in supported accommodation, or a block of flats you might not get someone knocking on your door or putting a flyer through your door about their party. So, it’s not always easy to get information to be able to make a choice about who you want to vote for.

Despite that, our Champions did know about The Conservative Party, SDP (Social Democratic Party), Liberal Democrats, Labour Party, Green Party, Heritage Party and The New Forest Party. There are lots of options and you can talk to your friends and family and get ideas to help you make a choice about who to vote for.

Ellie voted by post – you need to register to do this before the election. Ellie’s Mum helped her do this online.

    

Voting in person

Some people prefer to vote in person. David said that it is too far to walk to the polling station, so he needs to ask for help / transport to get there.

Remember your Photo ID to vote in person.

If you are voting on your own and don’t know what to do, you can always go into the polling station and say “I am here to vote, please can you tell me which desk to go to.”

The helpers can’t actually tell you which party to vote for – that has to be your choice.

Apparently, all the polling station staff have been trained to look out for sunflower lanyards – so they know that people may want to be offered extra help. So, you can wear one if you have one.

More participation

Changes (set out in The Elections Act 2022) are designed to boost the political participation of people with disabilities in voting and standing as political candidates. The Local Government Association provides support to disabled councillors and those considering standing for election to their local council.

You can read more about it here: https://commonslibrary.parliament.uk/research-briefings/cbp-9718/

Penny Sims
Penny Sims
Communications, Fundraising and Partnerships Lead

Meet Sarah…

Sarah joined Include in 2017. In the time between then and now Sarah has moved home a few times, navigated Covid and had hospital stays. Throughout all the changes and challenges Sarah has remained loyal to Include.

She is very thoughtful and brings so much to the charity – we are delighted to share what she has to say about Include and her role:

How Include Makes Me Feel

” Being part of Include helps me to be myself.

And it makes me feel proud and relaxes me.

When I come to The Include Choir, I feel listened to. There are people with and without disabilities and we all help each other. Together we raise awareness of communication needs. I am proud when my Support Worker joins in with the singing and Makaton signing.

The volunteers are great too – they set up and make it all run smoothly – they are non-stop like Alix – our Director! Alix is so good.

Singing makes me happy – even if I can’t get to choir one week I will join-in on Zoom.

Getting The Community Involved

The Mayor of Reigate & Banstead knows us – he likes our charity. He helps us get more empowerment and open it up to more people. At the Banstead Christmas lights switch-on he wouldn’t let The Include Choir leave! He just felt we were popular with the crowds.

At concerts and performances people in the audience ask questions and I like explaining about Include and telling them how I feel about it. I also like when the people watching join-in. When we performed in The Belfry shopping centre there was a kid who was blind dancing along with us.

I am Choir Rep for our new Epsom Include Choir. I would say to anyone; “come along – there is cake, it is fun and everyone is helpful.”

Part of the Decision-Making

My favourite song is the MCA (Mental Capacity Act) song. Choir members help to write the songs. I helped to write one about Covid too. Our songs are our own versions – with the words expressing our feelings and what’s best for us from our point of view.

I use Zoom to be part of the Include.org Steering Group and the Include Champions Group. It is really, really good to be involved with Include – when I’m part of these meetings I feel more involved. I am part of the decision-making and that makes me feel included.”

Penny Sims
Penny Sims
Communications, Fundraising and Partnerships Lead

How do you run an Inclusive Quiz?

Last month we ran our first ever in person fundraising quiz!

In lockdown we hosted one on Zoom but this time it was in a lovely setting – The Old Council Chamber in Reigate.

Being Include.org this was not a standard quiz. It was an inclusive one.

What helps to make a quiz inclusive you may ask? Well…here are a few things we did…

Role Model Hosting by Ciara

Although the Mayor of Reigate and Banstead was ‘host’ in that he invited us to use the Town Hall venue, he took a seat with one of the quiz teams on the night, and the quiz was presented by our Patron Ciara Lawrence.

Ciara recently spoke on our first ever Podcast and made it clear that as a person with a disability she is on a mission to ensure more of the world sees people like her for who they are and what they can do.

Well, we now know for sure…Ciara can brilliantly host a quiz evening, engaging a whole room of people with authority, style and warmth!

Something for everyone

People played in teams and we had a real mix of rounds and formats which all played to different people’s sensory strengths:

  1. Hearing – Name the song
  2. Signing – What does the Makaton gesture mean
  3. Taste and smell – Guess the crisp flavour
  4. Touch – Identify the household item hidden inside the sock
  5. Sight – Work out what the items are that we photographed very close up / micro
  6. General Knowledge – Answer audio / video questions from supporters like TV’s Dan Walker, Marcus Ramtohul (also in our first Podcast) DJ SUAT and Cllr Jonathan Essex
  7. TV knowledge – Easy Read questions from The Include Champions

We’re delighted to share the TV Quiz questions as the next FREE Easy Read resource in our series. Download Here (audio version to follow very soon):

Inclusion Wins!

There is always more to be done in terms of inclusion. But we did our best with limited resources and we were delighted that the team that won The Include Quiz was a mixed group of people – some of whom only met each other that night. Meeting new people is not always easy for people with communication needs, so that in itself was a big win.

This team, called “The Team That Shall Not Be Named”, included volunteers, choir members and parents. There were people with autism and visual impairment, playing alongside people without additional needs. There were volunteers who have literally just joined Include working alongside members who have been around for years.

We know that there was a team with regular quiz winners in it who were defeated on this night. But this was not a regular quiz!

So that’s a win in our book.

Want to make your own event inclusive?

If you want to host an inclusive event why not speak to The Include Champions Group to get their ideas and tips based on their lived experience of being a person with a communication need and/or disability? Enquiries to info@include.org

Penny Sims
Penny Sims
Communications, Fundraising and Partnerships Lead

What is Co-production, and is it important?

The Include Champions Group is a lived experience consultancy team, generating ideas, feedback and free accessible resources on important topics. Between us, group members have real world experience in of learning disabilities, autism and other communication needs.

Our latest FREE Easy Read resource is about Co-production. It helps to explain what Co-production is and why Include puts it at the heart of everything the charity does.

An audio version is on SoundCloud

Working together

Our dedicated Champions Group members meet every week via Zoom, and there is always something important to discuss, analyse and provide feedback on.

Last week we had an invite from Lloyds Bank seeking the input of people with additional needs. This is so the bank can try to design their services with everyone in mind.

We had a special guest on the Champions Group Zoom session last week – Cathy Wood who has joined Include’s Board of Trustees. She said:

“I was delighted to hear that Lloyds Bank are inviting Include members to provide feedback as experts by experience of what it is like to use their services with a communication need.”

Cathy W – Trustee of Include.org

Philip from the Include Champions Group said this;

“It makes us feel happy that they want our help. I’ll feel like I’ve achieved something and the bank is being helpful by asking us.”

Philip – Include Champion

We can help others

The Champions can teach services about their experiences and what helps them to communicate well.

For example, the Champions Group help design training for health professionals, to help them understand how to support people with communication needs in hospital.

The Champions can also help to check documents to make sure they are accessible. For example, the Champions worked with The Samaritans to make sure their flyer was easy to understand.

Trustee Cathy sums up:

“It was great to get more insight into the important work that The Include Champions Group does. Ensuring everyone has a clear idea of what Co-production is, and why it is important is such a valuable piece of work. We hope many organisations and individuals will make use of this Easy Read explainer.”

Please email us on info@include.org if you think you might like some help from The Include Champions Group.

Penny Sims
Penny Sims
Communications, Fundraising and Partnerships Lead