The PRSB is delighted to welcome Rix Inclusive Research, a technology firm specialising in helping people with intellectual disabilities, as the latest organisation to become a PRSB Standards Partner and join in our mission to accelerate the adoption and meaningful use of standards.
Rix Inclusive Research carries out research and develops digital tools for the benefit of people with intellectual disabilities, and promotes their use across education, health and care. Working from the Rix Centre at the University of East London, the Rix team co-develops highly accessible multimedia software tools with people with a learning disability, autism and dementia, their families and carers and the spectrum of organisations and professionals that work with them.
Speaking about this new partnership, Director of Rix Inclusive Research, Andy Minnion said: “Our aim is to help people help themselves. The accurate sharing of data across care settings and geographical boundaries is integral to this, and we are working to demonstrate the tangible benefits, but also the risks and consequences of failing to do so. Aligning with PRSB standards is a progressive and positive step forward in that journey.”
Rix tools help people advocate on their own behalf as well as through their carers, and this in turn leads to more person centred care and support services. The Centre’s flagship product, the Rix Wiki, has been adopted by local authorities, CCGs, care provider organisations, schools and colleges across England and Wales and is a selected Innovation with NHS England’s National Innovation Accelerator programme (2020).
The Rix Centre sees partnership with the PRSB and its community of practice as a critical part of helping health and care services to engage more effectively with people with disabilities so that their information and insights, as well as those of their carers, can improve the provision of person centred care.
Professor Andy Minnion, Rix Director, underlines the importance of the new partnership: “In order to facilitate effective personalised and person centred integrated care, we want to enable the straightforward, secure and efficient sharing of information for the growing number of citizens who hold their personal health and care data on their own digital devices. Alignment with the PRSB’s About Me information standard is essential for the long-term success of this programme.”
“It’s an absolute pleasure to welcome Andy and his team at Rix Media and Research as a PRSB Standards Partner. Their drive to improve care and empower the individual speaks volumes about the projects they are leading on, and I’m delighted to have formed an alliance with such an innovative team.” Lorraine Foley, PRSB CEO
The Me and Your Stories project looks at how we can support digital inclusion through the sharing of stories. Our final conference takes place in person and online on Thursday 17 March, 10am-1pm
We are excited to announce that the Me and Your Stories conference will feature Keynotes from
Professor the Baroness Sheila Hollins, Beyond Words Shamima Akhtar, Policy Connect
We will also have presentations from Abingdon and Witney College, Charlton Park Academy and the Rix team here at UEL.
Delegates can attend in person or remotely – book online for more details
Professor the Baroness Sheila Hollins, Beyond Words
Sheila is the Beyond Words Founder, Chair of trustees, and Editor of the Books Beyond Words series. She is Emeritus Professor of Psychiatry of Intellectual Disability at St George’s, University of London, and sits in the House of Lords as an independent crossbench peer.
Shamima Akhtar, Policy Connect
Shamima works on the All-Party Parliamentary Group for Assistive Technology.
She has experience in the Disabled People’s Organisation sector where she worked on policy and campaigns related to Covid-19. She also has a keen interest in accessible and assistive technology (ATech).
Special guest
We are very excited to announce that Abdi Omar will be closing our conference after the panel discussion. Abdi’s years of experience showing the world that cerebral palsy is his strength now see him travelling the world to motivate others. Abdi will share his story, How technology changed my life. You can find out more about Abdi’s inspiring work on his website.
The Me and Your Stories (MYS) project is hosting an international, interactive, hands-on conference that brings together European leaders with practitioners and developers to share and explore the ways in which new digital tools can make inclusion exciting.
The MYS conference is aimed at practitioners working in places like schools, colleges, community centres and museums and there are still places available, both online and face-to-face.
The day will be packed with presentations, interactive workshops and discussions, all of which will provide you with creative ideas on how to use innovative digital tools to promote inclusion within your organisations and communities.
We encourage early bookings – there are still places available but experience shows that these go quickly!
Me and Your Stories Conference
Thursday 17 March
10am-3.30pm
Knowledge Dock Building, University of East London and online
Following the success of the purpleSTARS sensory exploration, London is the place for me, the Museum of London has offered to extend the show until 23 January 2022.
The purpleSTARS had been working on the project throughout lockdown, including attending 20 weekly Zoom meetings, so they’d been on quite a journey by the time London is the place for me opened in September 2021.
Lee, Rufaro and Paul from the purpleSTARS
The Rix Centre invited people to the museum’s Talking Point gallery on Tuesday 30 November to celebrate the success and popularity of the sensory display.
This is a special display…specifically set up in a space in the museum where we can experiment and try things out for the first time and do things in a different way.
Vandana Patel, Museum of London
Over 800 visitors have already used Ultraleap’s unique touch-free technology to complete a Rix EasySurvey and give their feedback. 70% of visitors said that the display was interesting and prompted them to think about their own Londoner experience. Over 90% said that the display had increased their knowledge about the lives of Londoners in the past.
The project has been really fun and we should make museums fun. Allow people to learn, get up close and touch everything.
Samantha Walker, purpleSTARS
Find out more about the purpleSTARS and London is the place for me below
Following the success of our recent MYS conference, we’d like to share some video highlights of the event.
Over 40 people attended on the day and the project will now move into a testing phase, trying out the MYS toolkit in different classrooms across Europe. We all look forward to meeting up again at the end of project conference on 17 March 2022.
Many thanks to Abby Hanby for compiling the video highlights.
The purpleSTARS are a group of people with and without learning difficulties based at the Rix Centre who work together to make museums more inclusive.
Their aim is for everyone to make personal connections and really enjoy their visits, whatever their background or abilities.
This new free display in the Museum of London’s Talking Point gallery, features sensory elements from sounds to images and even smells, explores the lives of Londoners past and present and invites visitors to reflect on their own experiences of the capital.
During lockdown, as part of this project, the purpleSTARS listened to recordings made over the past 80 years from the Museum of London’s oral history collection.
They recorded their thoughts about these stories during video meetings and made connections to their own experiences as Londoners, using a Rix Wiki to capture this journey of exploration.
We picked out themes that are important and interesting to us, Equality, Cinema, Style and Travel. Listening to some oral histories inspired us to come up with our own messages about equality as Londoners.
purpleSTARS at the Museum of London
The purpleSTARS then looked for images and objects from the museum that matched these themes and incorporated touch and smell into their displays to give people a multisensory experience of the stories that were emerging.
Visitors to the Talking Point gallery will be able to explore these stories using new touchless technology from project partners, Ultraleap.
The display opens on 3 September and runs until 17 December
Pre-book your tickets here
If you own a car, you’ll be familiar with the MOT, an annual health check for your vehicle that gives you pointers and advice about any repairs needed to keep your car running smoothly.
Rix have developed an MOT for your school or organisation. Our MOT checks your readiness to use new digital tools that could transform practice and improve outcomes for the people you teach and support.
Whether you feel your organisation is already using person centred, inclusive technology or has a little way to go, our audit will benchmark your current status and give you ideas to help you take the next steps towards digital inclusion.
We understand how busy people are, so our quick MOT is designed to be completed within a few minutes. Respond by selecting the statements which best describe your school or social care organisation.
Rix will use your responses to generate a unique report of your current status in the following areas:
Person centred practice and processes
Culture and confidence
ICT equipment and software
Connectivity
In addition to the report, we will include a set of corresponding actions to help you take the next step on your inclusive digital journey. These actions can form the basis of your organisation’s action plan.
If you are a school, multi academy trust or college, start here
MYS – Me and Your Stories – is a pan-European project that puts the learner at the heart of the community and the classroom by providing powerful storytelling tools on a digital platform.
Sharing stories helps people understand and celebrate difference. The MYS toolbox enables young people to share their own stories, as well as reflect on each other’s, by capturing their voices, thoughts and experiences using photos and videos.
This project supports inclusion by making it easier for everyone to have a voice and for all those voices to be heard as part of a bigger conversation about diversity and difference.
The MYS conference on Thursday 14 October is an opportunity for educators and people who support people with learning disabilities to come together, be inspired, and share ideas about the different ways in which we can use digital to open up the world to people who are more likely to be excluded from it.
Dr Nicola Grove, an expert in the field of storytelling, will be the keynote speaker at the conference.
I believe passionately in the value of the lives of all individuals, linked to each other through our shared stories.
Through stories we find out about new experiences and ideas, develop empathy and imagination, and learn how to face challenges and solve problems.
Nicola Grove
Book your free place for the MYS conference now – limited places available
14-20 June is Learning Disability week and Mencap are celebrating the art and creativity that has helped many people with a learning disability stay connected and positive through the challenges of last year.
We already know from our NHSx Stay Connected project how important creative expression has been for people as they faced increased isolation through having to stay at home for so long. So we were excited to hear that the Digital Lifeline project has distributed over 5,500 devices to adults with learning disabilities, along with the data and digital skills support to use these devices safely and with confidence.
Digital Lifeline is an emergency response project funded by the Department for Digital, Culture, Media and Sport (DCMS) and delivered by Good Things Foundation in partnership with AbilityNet and Digital Unite. The project is supported by Learning Disability England, the Voluntary Organisations Disability Group, self-advocates and other disability and digital inclusion organisations.
Almost three quarters of people with a learning disability said their wellbeing was affected by the impacts of the coronavirus pandemic and those without digital skills faced a huge additional barrier to accessing essential services and staying connected with loved ones.
We are already working in partnership with Digital Unite on their Zoom training resource and are, therefore, well-placed to help evaluate the success of the Digital Lifeline project by talking to people with learning disabilities about their experience with their new internet-ready tablets. Ajay Choksi, Rix team member and Wiki Master put it like this:
“We’re going to work on the Digital Lifeline evaluation…it feels good!”
As part of this work, Ajay has showcased his Multi Me to show others how helpful it has been to connect people up on the platform. Ajay continues to develop his advocacy leadership skills through projects like these and is recording this journey of development in his new Advocacy Leadership Wiki.
The Digital Lifeline project has shown us all how important it is for us all to work together to find solutions to the social isolation of vulnerable groups, especially during the pandemic and the support and partnership of the wider learning disability sector has been essential to the project’s swift roll-out and success.
You can find out more about Learning Disability week and get involved here
Rix EasySurvey is our groundbreaking accessible survey tool, fun and easy to use for both survey creators and survey voters.
We have made some exciting improvements to Rix EasySurvey and want to share these with you. The improvements are designed to make our software easier to use and are in direct response to suggestions from our community of users.
Most recent survey first
We’ve changed the way we present your surveys. The survey that was edited most recently is now at the top of your survey list.
More detailed activity information
When a voter responds to a Text entry question, you’ll notice that the results are displayed in the word cloud. We’ve now added the last 10 responses too, directly under the word cloud.
Survey complete message
We’ve listened to you and updated our standard survey completion message to voters. The new messaging simply thanks voters for their participation.
Rix branding
We’ve updated the Rix EasySurvey branding to reflect the Rix and University of East London’s smart new logo.
Save question also saves survey
We listened to our user community on this one. You said that clicking Save question, then Save survey, was a click too many! We’ve changed the Save question action to also save the survey from now on.
We’ll be updating our training resources to reflect these changes.
MEDICI’s final conference, Digital Inclusion For All, took place on 26-28 January 2021. MEDICI is a pan-European EU-funded project that maps digital inclusion and hosts the MEDICI Knowledge Community.
The primary goal of the conference was to address the challenges of digital exclusion and discuss emerging good practices in the field of digital inclusion in Europe. The conference consisted of three days of presentations and discussions on the theme of better digital inclusion for vulnerable groups in Europe and beyond.
With 34 speakers and over 800 participants from 33 countries, participants had the opportunity to meet practitioners and experts, be inspired by keynote speeches, and learn about different approaches in a series of workshops. Rix co-director Gosia was invited to give a keynote presentation to a parallel session, Integrating older people and people with disabilities in the digital world. This session also included a presentation by Ineke Schuurman, from Belgium, about the Able to Include project.
Gosia took the conference on a brief history tour of Rix and talked about the Living Lab concept and the Participatory Action Research model. She described the digital journey from early digital cameras all the way through to the development of multimedia tools like the Rix Wiki and Multi Me software. She spoke passionately about Multimedia Advocacy and the guiding principle of keeping the person at the centre of everything we do when working with and supporting people with learning disabilities.
In the discussion that followed, Gosia was able to promote the idea of peer-to-peer learning, citing the shining example of Rix team member Ajay Choksi who has continued to develop his excellent peer-to-peer training skills over the past year. When another delegate was inclined to put significant limits on people’s potential to learn by continually referring to their notional ‘mental age’, Gosia was quick to remind everyone that constantly equating a person’s ‘mental age’ with the inability to learn new things overlooks the fact that this adult person will have the life experience of an adult.
“When people are excluded, they lose out and we lose out…this group of people can really contribute to society and they need to be visible”
Gosia also touched on the theme of digital exclusion when asked about the onboarding process of the recent TechForce19 Stay Connected project. Project partners and their respective services found that in many cases people with learning disabilities did not have access to the technology that the rest of us take for granted – smart devices, internet access and a familiarity with the digital environment. As a consequence, people were often excluded from taking part in the project, missing out on the opportunity to connect with others during these challenging times.
Digital inclusion for all, therefore, starts with tangible, practical steps and includes not only the provision of technology and support but also the commitment not to underestimate people’s ability to learn.
The Government has set up a £2.5 million fund to provide devices, internet connection and digital support to people with learning disabilities who can’t afford to get online.
Digital Lifeline is funded by the Department for Digital, Culture, Media and Sport and delivered by Good Things Foundation, in partnership with AbilityNet.
Ajay Choksi, Rix Wiki Master and trainer, has been invited to sit on the associated Government Advisory Board as a self-advocate accompanied by Rix support. This is a great opportunity for both Ajay and Rix to be part of this exciting project.
“Covid has shown how access to technology is a vital part of an independent and fulfilling life for everyone in the community.”
Gary Moore, CEO of AbilityNet
Recent research has shown that the wellbeing of people with learning disabilities is twice as likely to have been affected by the impact of coronavirus when compared to non-disabled people.
The principal aim of the Rix Centre’s Stay Connected project with TechForce19 during the pandemic was to show how the Rix Multi Me software can help reduce feelings of loneliness and support the mental health and wellbeing of people with learning disabilities.
One of the barriers that our Stay Connected partner organisations identified during the implementation phase of the project was a lack of digital connectivity amongst supported users. This issue can be divided into the three distinct but related needs: hardware (having a suitable device), support (being able to use the device) and internet access (having broadband or a data contract).
According to the Government website, the Digital Lifeline scheme will pay for 5,000 Android tablets, preloaded with data and free tech support, for those people with learning disabilities who find themselves digitally excluded and socially isolated because of coronavirus. The fund will be delivered through participating organisations rather than via individual applications.
A digital lifeline
The Government website sets a tight deadline for applications:
“Applications are welcome from organisations operating in England that support people with learning disabilities, including self-advocacy groups, community-based organisations and those that provide support to people where they live. As an emergency response project, applicants should be prepared and able to begin immediate delivery of the Digital Lifeline programme.
The deadline for applications is 12pm on Monday 15 March.”
We’ll keep you updated on Rix team member Ajay’s involvement in the Digital Lifeline programme.
In the meantime, if you think this opportunity is too good to miss for your organisation and the people you support, get your skates on and apply below!
Let us know how you get on and please do contact Rix at rixadmin@uel.ac.uk if you have any difficulty accessing this opportunity for the people you support – we will do what we can to assist!
We are excited to announce that our Rix Wiki parent champion Sam Bergin Goncalves will be speaking at the Health Plus Care Online event taking place on 24-25 February.
Sam will be using this opportunity to talk about the benefits of using Rix Wikis to share information and will be appearing alongside Professor Adam Gordon, President Elect of the British Geriatrics Society.
Last year the Professional Record Standards Body published five new landmark standards to ensure that services can work together better and support more personalised care for individuals. Sam Bergin Goncalves, the Citizen Lead on this PRSB project, will talk about how putting the standards into practice can improve the quality of support for people like her son, Shane, who has complex needs. Meanwhile, Professor Adam Gordon will talk through the standards from a clinical perspective, explaining how they will support health and social care professionals in tailoring care and support for individuals with a focus on their wellbeing.
We caught up with the Inclusion North team to find out how they have been using our Rix EasySurvey software during the past year.
Inclusion North exists to make inclusion a reality for all people with a learning disability or autism and their families. They are a regional organisation working across the North East, Yorkshire and Humber regions.
For those who don’t know, Rix EasySurvey is an accessible survey making tool. Perfect in its simplicity, EasySurvey is fun and easy to use. It’s exactly what you would expect from Rix software. There is also a fantastic free version of the software, EasySurvey Lite, which you can access and use today.
Inclusion North used EasySurvey to make sure the views and ideas of the people they support could be captured, documented and organised. Gathering this information as part of their person centred approach helps them make sure that the services they offer are appropriately designed for the people they work with.
The Inclusion North team shared their top 5 highlights of the software
1. Being able to put together an easy read survey with pictures is fantastic
2. The sound quality for each of the written questions is great
3. It’s easy to understand the data once people have completed their survey
4. The training guide that comes with the software is really useful
5. It is like no other survey we’ve found – really accessible
The team have also suggested developing the software to allow survey creators to download a printable version of the online survey. At Rix, this kind of feedback helps us to develop and improve our software and this ethos of co-production underpins the way we work with our partners. The team from Inclusion North are experts and we look to them to help us make our inclusive technologies even better.
Inclusion North’s goal of inclusion for all is a big and important challenge and we believe that our Rix EasySurvey software is helping to make this a reality.
Your council, clinical care group, charity, care organisation, school, or group can benefit in the same way by signing up for Rix EasySurvey. Making this reasonable adjustment will enable people to complete your accessible surveys and let you know what they think.
There are resources and links below to help you get started today. Before you know it, you’ll be sending out your first fully accessible survey to the people you want to hear from and whose views can help shape your service.
“Inclusion means everyone living good lives as valued members of society. We work to change society so that everybody can have a good life.”
Inclusion North
The NHS Digital Social Care Pathfinder programme 2020 has been funding 16 local programmes to implement innovative information technology solutions to improve the sharing of information between health and social care.
One of the areas identified as needing improvement was the About Me section in the Core Information Standard which is used in shared care records and digital care and support plans. The Professional Record Standards Body, PRSB, was commissioned to support this work.
The About Me section is for people to share important information about themselves with others who support or care for them to enable person centred care and support. This may be different from the information that a professional records about a person as it is what the individual wants to share and it will be what is important to them. It is only shared with people who have a legitimate reason for accessing the information.
Andy Minnion, Rix director, met with Sam Goncalves to find out more about her work as Project Citizen Lead with the PRSB.
Tell us about your role as a parent carer representative with the PRSB
The role of Project Citizen Lead in the development of standards has been to represent the interests of the public in the design and development of record standards, an area that is very important to me as a parent carer of a young adult with complex needs. It is important to drive change in record standards by promoting themes that patients really care about. Patient centred outcomes are just as important as outcomes that focus on good care.
Why is it important to have an Integrated Care Standard?
Individuals and their carers should have a voice in their health decisions and autonomy in deciding about their care, treatment and support. People are the experts on themselves and their values and preferences should be respected. Sharing About Me information with both health and care providers will give people that voice. Information you won’t necessarily find in a medical report – information like how an individual communicates, how they make choices and what strategies could make them feel more relaxed, reducing stress and anxiety.
For those who are physically disabled, knowing and understanding not only when they need support but also when they do not, to ensure they are always treated with dignity and respect.
“Many professionals appear to be trying to fit people into systems. About Me is about turning that around so that systems have to fit around the person. The reasonable adjustment is the task of the service to adjust to the person not the other way around.”
Tricia and Tony, parent carers
What is your experience of the importance of About Me information?
I have been sharing About Me information about my son Shane for 8 years using digital technology by inviting all carers and professionals to view Shane’s Rix Wiki. Knowing how Shane communicates, what he likes and dislikes, what’s important to him, when to support him and when to allow him time to be independent is all vital information to provide good care and support.
“The vision from the start was to get proportionate About Me information at the forefront of every health and social care record, even in an emergency”
Keith Strahan, Clinical Lead, Social Care Programme at NHS Digital.
Having access to About Me information reduces the number of times people have to tell their story. This not only saves time but also a lot of stress and anxiety. Many patients like my son who receive social care have a long-term disability. Their “story” to retell can often be extremely upsetting. In our case my son contacted meningitis 25 hours after he was born and as a result suffered brain damage causing cerebral palsy, blindness and a severe learning disability. I have lost count how many times I’ve had to retell my story – retell the details of the most upsetting, terrifying period of my life. Think about the most upsetting time in your life and imagine how you would feel if you constantly had to relive that day. Reducing the need for this retelling is of great benefit to both patients and family carers.
When we know how best to support a patient in hospital, we not only keep the patient and staff safe, the patient also receives a better quality of service which results in healthier and happier people.
Sam with Shane, Declan with his cousin, Caitlyn
A couple of weeks into lockdown I ended up in A&E with my son. He had a large peanut stuck up his nose and, as someone with a profound learning disability, this quickly became a medical emergency. As Shane is visually impaired, I explained to the ER nurse that he should allow Shane to feel the blood pressure arm cuff before placing it on his arm. This would help him feel more relaxed and more prepared for what was going to happen. Responding positively to his signing when he signed finished and reassuring him that it was almost finished enabled him to tolerate the whole procedure. Discussing with the doctor the need for Shane to be sedated using a mask and not an IV meant the right treatment plan was put in place. If I had not accompanied Shane and this vital information had not been shared the medical team would have tried sedating Shane through an IV which was their initial plan. This would not have been successful and he would have become extremely distressed displaying behaviour which is very difficult for everyone to manage. This would mean more time spent in hospital, as an alternative treatment plan would have become necessary.
This is an example of the type of information in an About Me record which, when shared, can make a huge difference to both patient and staff safety. We can avoid prolonged hospital admission and unnecessary patient distress by small reasonable adjustments offering treatment that is appropriate and safe. And for hospital admissions during the pandemic, this About Me information becomes even more important as people often end up going into hospital without the people that know them best.
Tell us about using the Rix Wiki to capture the voice of parents and carers in your work with PRSB
During our consultation period we had to think outside the box as we were unable to hold face to face focus groups during the pandemic. People had to stay at home and work from home and many of the people we wished to engage with were shielding or self-isolating. Using a Rix Wiki for this engagement seemed the obvious solution to me.
The revised approach involved asking people in care homes, individuals receiving social care at home, informal carers and community-based professionals to record videos or audio clips or provide written evidence responding to questions about what information they would include in an About Me.
Online surveys were one part of the overall consultation approach in the development of the standards, and an accessible version was developed using Rix EasySurvey. This enabled those with additional needs to record their views.
“Health and care professionals need information about what matters most to people so that they can provide care that genuinely meets their personal needs. PRSB sets standards for sharing information and we worked earlier this year with Rix Media and used their EasySurvey tool to learn from people with complex needs what information they think is important to share about themselves to improve care. EasySurvey helped us get excellent feedback that will help improve care.”
Helene Feger, Director of strategy, communications and engagement, PRSB
By listening and engaging with patients and their carers we can develop standards that reflect what’s important to them.
The overall objective of the pathfinder programme was to accelerate improvements in both health and social care. Good care alone is not enough for me. Good care keeps you alive and safe but improved care is where we are listened to, valued and understood, our goals and health ambitions are taken into account and support is offered to help us to achieve these.
On 3 December 2020, 250 people from 40 different countries came together on ZOOM for the Global Self-Advocacy Summit organised by Inclusion International
The Summit gave voice to the work of a large and diverse group of people with learning disabilities from all corners of the world including Hong Kong, Trinidad, Malawi, Ecuador, USA, India, Indonesia, Austria, Australia – too many to list all of them here and a genuinely global event.
The delegates had each prepared a poster representing where they were from and a short video presentation about their self-advocacy work in areas like training, advocating for changes in the law and providing information in easy read.
Chosen Power, Hong Kong
We also heard from several people from the UK including our very own Wiki Master Ajay Choksi, an inspiration to many and the ideal person to represent the self-advocacy at the heart of everything we do at Rix. Ajay spoke about the work he has been doing to support people who are feeling isolated during the pandemic, including working with Digital Unite to produce a ZOOM online training resource. Watch this space!
Alongside Ajay, a truly international band of self-advocacy champions shared their achievements so far and their hopes and dreams for the future. The Summit was full of positive energy and inspiring cameos and if anyone’s feeling a bit deflated, or even defeated by these challenging times, we wholeheartedly recommend that you watch the video of the event put together by Inclusion International.
We respect each other and we don’t care about difference and that’s what the world needs. So let’s just get out there and save the world
Don, Advocacy Communication Project, USA
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