Year: 2016

All of the team at Rix Research & Media are deeply saddened to hear of the passing of Lord Rix. The Rix centre is named in honour of Brian Rix and he was instrumental in establishing research in technology for people with learning disabilities at UEL at the turn of the century.

Lord Rix passed away on Saturday 20th August at the age of 92. In addition to being a well known stage actor and entertainer, Lord Rix was a tireless campaigner for the learning disability community and was also the University of East London’s first Chancellor from 1997 to 2012. In 2014 he helped establish The Rix Centre at the university, now Rix Research & Media, which was founded to explore and develop ways of using new technologies to transform and enrich the lives of people with learning disabilities.

Since 2014, the Centre has pursued action research in partnership with disabled people, their families and the various professionals that provide for their education, health and care – and none of this might have been achieved without the support and inspiration of Lord Rix.

Here at Rix Research & Media, we will continue to feel the impact of his passionate belief in providing people with disabilities with opportunities to thrive. He constantly supported and guided our work and was a true inspiration. He will be greatly missed.

The Rix Inclusive Research team have produced this short video that features the voices of the people with learning disability with whom Lord Rix has worked with over the years. They appear on camera to celebrate his life and achievements and share their experiences of working with Brian as his colleagues. Their moving comments highlight the affect that knowing Brian has had on them as individuals as well as the tremendous contribution he has made to their ongoing campaign to achieve equality as disabled people in our society. The video will be a key contribution to Lord Rix’s memorial.

From the Archive: Brian Rix presents ‘Let’s Go!’ – Lord Rix’s enduring commitment to media advocacy for people with learning disabilities is reflected in this vintage video extract from the ‘All About Us!’ DVD, produced to accompany the book that he wrote of the same name, published by Mencap in 2006. The ‘Let’s Go!’ series featured various day-to-day activities that could help enable independent living for young disabled people with the right support, such as using the telephone, traveling on public transport and just going out and having a good time! ‘Let’s Go!’ included sequences in which people with learning disabilities used the technologies of the time, including SLR cameras and computers. The programme, shown every Sunday morning on the BBC, actively promoted the use of new and emerging technologies to directly benefit people with learning disabilities and presented the vision of inclusion for this population that Brian campaigned for in so many other ways throughout his life. Lord Rix instilled the same goals and values at the heart of the Rix Centre as it was established more than 40 years later at the University of East London.

“A Wiki can be an amazing multi-faceted tool that can help people at all stages of life, in different ways.”

Trisha Holmes is Project Manager 0-65 Disability Service at Croydon Council. Trisha is implementing Multimedia Advocacy and Rix Wikis throughout the borough, to support children and young people with special educational needs and disabilities.  She has also set up a post-16 project using Wikis to help young people transition into adulthood.

These are her words:

“Why am I so passionate about Wikis?  They are so empowering.  A lot of children and young people with additional needs and disabilities are reduced to problems on the page. With a Wiki, you immediately turn the problem upside-down and you actually see the human being.”

“I’m working with parents who have started to develop their Wikis, including one who has a child with complex health needs and who has at least 17 different carers.  Her mum could see the value of a Wiki, to show what she can do, how she communicates and to teach the carers how to care for her when they know she’s in pain, or she’s hungry or thirsty.  It’s incredibly powerful.”

“Another mum shared her son’s Wiki with us.  She explained that Harry can’t have a conversation with anyone easily and won’t look anyone in the eye.  But she showed a video of him standing on stage at the Royal Albert Hall, in front of hundreds of people, playing in an orchestra.  And that’s the power of a Wiki.  Suddenly you look at Harry in a different way.”

Post 16 project

“There’s a group of young people and we want to work with them to provide pathways into education and employment for them.  These are young people who would have been sent away to residential schools out of their own community.  So they would have to come back and start to re-establish their social network, having lost touch with their school friends and not knowing how to get around in Croydon.  So we’re keeping them in the community.  They have a formal education two days a week then spend time at the local youth centre learning life skills.

“We’re helping them transition to adulthood.   The young people have set up their Wiki, calling it ‘Access to Success’ – it’s a personalised study programme.

“So they are learning practical skills, about being safe, getting out and about, cooking, staying healthy, working together as a team, and making friends.”

Click the video below to see a short video of Trisha Holmes sharing her experience of implementing Multimedia Advocacy and Rix Wikis in Croydon.

The Central North West London Mental Health Rehabilitation Service (CNWL) promotes digital inclusion to ensure that its service users are not excluded from accessing new developments which could enhance their wellbeing and social inclusion.

CNWL began a project to develop a Digital Health and Wellbeing Plan in partnership with Rix Research & Media, a research centre at the University of East London.  Rix has developed a unique multimedia self-advocacy approach to person-centred planning, where people with learning disabilities can use Web and multimedia authoring tools to share their interests and aspirations and better explain the ways that they like to be supported.

Central to this approach is the Rix Wiki.  Co-produced with users, parents and professionals, the Wiki is a simple, personal, multimedia website.  Using pictures, words, video and sound, service users can show care staff what is important to them in their lives and their support services. The approach includes confidence-building exercises and patient rights based perspective.

CNWL believed the Rix Wiki would be invaluable in supporting those who access mental health services to develop Digital Health and Wellbeing Plans.  In September 2014, CNWL undertook a pilot to evaluate the use of a Wiki for people accessing rehabilitation services.

CNWL implemented the pilot within existing resources.  Staff in in-patient rehabilitation units, including occupational therapists and an activity coordinator, worked in partnership with a Peer Trainer from the Recovery College.  Following online Multimedia Advocacy training provided by Rix, CNWL ran workshops co-produced with the Peer Trainer and service users, using iPads to overcome difficulties accessing IT and Wi-Fi in the rehabilitation units.  Staff worked with five individuals to develop personalised Rix Wikis and the Peer Trainer developed his own Wiki plan.

The project sought to improve service users’ self-advocacy skills and self-confidence, supporting positive risk taking and self-disclosure in the therapeutic relationship.  It also aimed to shift the focus of the staff/service users’ relationships in Rehabilitation Services from risk monitoring towards the creative encouragement of communication skills.

Feedback from service users and staff was positive.  Rix Wikis provide a ‘dynamic extension’ and a ‘step-up’ from the original health and wellbeing plan, allowing individuals to express themselves creatively, update their plans easily, and envisage a more positive future.

“A Wiki allows me to communicate my person and character in a way that is meaningful to me.”

In January 2015, CQC inspectors expressed support for the wider implementation of Rix Wikis.

In September 2015, CNWL, the Recovery College and Rix took forward the work to use multimedia self-advocacy in Mental Health Rehabilitation Services to produce a Digital CNWL Health and Wellbeing Plan.

In January 2016, Rix and the Recovery College completed the development of a Wiki Health and Wellbeing Plan, co-produced with Peer Trainers, and this has been incorporated into the Recovery College’s course ‘Taking Back Control’.  The course is now being run throughout this year at the College and rehabilitation units.  Staff and Peer Trainers have attended ‘Train the Trainer’ workshops to co-facilitate ‘Taking Back Control’ and ensure the approach is embedded. Peer Trainers are now actively using the Plan.

Service users supported by this approach are using ‘Wiki’ websites to contribute to their care planning and have an increased frequency of social contact as well as shorter average lengths of stay in high dependency settings.

“It is a really fantastic vehicle for celebrating a person’s strengths rather than always focusing on the negative and that is of great value within mental health services.  The Wiki is pushing the boundaries of involving people in their own care and being able to advocate for themselves.”

CNWL Peer Recovery Trainer

You can view individual case studies from CNWL by clicking below:

Waldo’s Case Study

Thea’s Case Study

Amanda’s Case Study

Santino’s Case Study

Mary Busk is a family carer who lives in London.  Her son, Alex, has complex learning and communication difficulties.

In this article for the Challenging Behaviour Foundation, Mary offers some helpful advice when planning days out as a family.

Mary and Alex have produced a Wiki which can be viewed here: https://www.rixwiki.org/rixresearch/home/alex-case-study/

 

The King’s Fund annual Digital Health and Care Congress 2016, taking place this week, will explore how the better use of technology and data can support and enable the developments needed to transform outcomes for patients and citizens.

Andy Minnion MBE, Professor of Media Advocacy at Rix Research & Media, has been invited by the King’s Fund to share the expert work of Rix in pioneering easy-to-use Web and multimedia tools to provide the most vulnerable patients with improved choice and control around their healthcare.

Rix applies a co-production approach to its research and development projects with particular focus on patients with intellectual disabilities and mental health issues, together with their informal supporters and the range of health and care professionals with whom they work.

Rix has produced and tested software, working methods and implementation strategies for inclusion through the application of new media for 15 years.  It has developed a unique ‘Multimedia Advocacy’ approach to person-centred planning, where patients with learning disabilities and mental health issues can create their own portfolio of multimedia content to communicate effectively their preferences, views and needs.  The patient voice is vividly articulated and the result is improved and inclusive healthcare.

Professor Minnion highlighted the work of Rix with the Central North West London Mental Health Rehabilitation Service (CNWL), which promotes digital inclusion to ensure that its service users are not excluded from accessing new developments which could enhance their wellbeing and social inclusion.

CNWL began a project to develop a Digital Health and Wellbeing Plan in partnership with Rix and, last year, successfully piloted the use of the Rix Wiki, a simple, personal, multimedia website.  Using pictures, words, video and sound, service users can show care staff and therapists what is important to them in their lives and required from their support services.

This new approach to self-management of health and wellbeing by mental health patients included confidence-building exercises and patient rights-based perspective.  It helped to improve service users’ self-advocacy skills and self-confidence, and also aimed to shift the focus of the staff/service users’ relationships in Rehabilitation Services from risk monitoring towards the creative encouragement of communication skills.

Rix Wikis are now providing a ‘dynamic extension’ and a ‘step-up’ from the original health and wellbeing plan, allowing individuals to express themselves creatively, update their plans easily, and envisage a more positive future. The work with CNWL has extended to the Recovery College with the integration of Multimedia Advocacy and Digital Health and Wellbeing Plans into their ‘Taking Back Control’ course.   Service users supported by this approach are using Wikis to contribute to their care planning and have an increased frequency of social contact as well as shorter average lengths of stay in high dependency settings.

Professor Minnion set this work in the context of a spectrum of different models of Multimedia Advocacy that have been applied in health and care settings and he charted a rapidly emerging set of digital healthcare solutions that challenge conventional perspectives on how new technologies can transform healthcare services.

He comments: “Today’s media technologies can realise patient self-advocacy and, in the process, improve the standard of care for the most vulnerable.  The King’s Fund Congress highlighted how, after a decade of investment into ‘top-down’ models of tele-health implementation, the adoption of digital healthcare solutions still faces considerable resistance.

“Multimedia Advocacy is a fresh approach, with patient-run technical solutions providing a new paradigm for Digital Health that puts the service-user experience at the centre. Using simple social media tools and consumer technologies, we now have systems that can potentially place health management firmly in the hands of the most vulnerable patients and their immediate support circles. This model turns conventional wisdom of Digital Health on its head – and promises to improve the patient experience in the process.

“Multimedia Advocacy can achieve real efficiency in multi-agency working and it is this re-modelling of Digital Health and Care that could provide significant economies for tomorrow’s health service. The challenge, of course, is that this approach demands significant cultural change for the healthcare sector.”

Mary Busk highlights the difficulties faced by parents/carers in getting the support from schools who are struggling to cope with cuts to their budgets.

To watch Mary on BBC, please click here: http://www.bbc.com/news/uk-36432079

Mary and her son Alex have produced a Wiki which can be viewed here: https://www.rixwiki.org/rixresearch/home/alex-case-study/

Melissa Johns is a Higher Level Teaching Assistant at the Royal Free Hospital Children’s School and recently has been in charge of implementing the use of the Rix Wiki. She was first introduced to the Rix Wiki by her headteacher who had wanted to bring the Rix Wiki into the service since the day he got on the job. The Rix Wiki is most popularly used as a communication and self-advocacy tool for individuals with intellectual disabilities so Melissa had to create a new system for using the Rix Wiki that would be more applicable for her students. The hospital school is primarily focused on teenagers with mental health difficulties.

“We don’t use a lot of the video and sound aspects because our students do not need them so their Wikis are primarily text and pictures. However, there are days when a student does not want to speak at all and it is very important that he or she still has a say in matters concerning them.”

These students have a lot of professionals meetings that they are required to attend. At some meetings there can be up to ten professionals. “There are social workers, consultants, psychiatrists, and parents all making decisions for this one person, and this is where the Wiki comes in” Melissa explains.

The Rix Wiki allows the student to express his or her opinions, goals, and feelings even when they are having a really difficult day or are too embarrassed to speak up. In many ways it ensures that the individual’s voice is always being heard. Melissa says the purpose of having the wiki is to “put the student at the center of their own planning and in all of the decisions that are being made around them.”

There are currently ten students using the Rix Wiki at the Royal Free Children’s School. All of them are between the ages of 15 and 17 and dealing with mental health challenges, but this doesn’t make them any less teenagers.

“Most of them have a very difficult time writing about how they would like to be supported because at that age you don’t want to be asking for help and when you have a mental health challenge this becomes even more difficult” Melissa says.

Motivation is also another issue that Melissa has run into but last term she was able to come up with a solution.

“I have a list of set tasks, and I give the students a series of prompts and questions to guide them in their writing. We noticed that when given a prompt the students find it much easier to write” she explained.

The Rix Wikis are also very helpful to the staff at Royal Free Hospital School.

“We are a really small provision here and it is a very personalized learning environment. The Wikis keep everyone in the bubble” she explains. “A teacher can look at a student’s Wiki and see how he or she wants to be supported and the goals he or she wants to achieve and then implement that into the lesson.”

The wikis also help students in their transition into college.

“Since it is electronic it is easier to share with other professionals. When one of our students is going to college we have the option of sending their support coordinator the student’s Wiki, and by having that information it makes it easier for both the support coordinator and the student” Melissa says.

Ultimately Melissa says “The Wiki gives our students a voice again. It is really hard to expect a teenager with mental health difficulties to be put in a room with people and say this is what I want, this will make me better, and this is how I want you to support me. Although the Wiki doesn’t provide the exact answer to those questions it certainly aids them in finding a solution.”

Melissa has recently been awarded by Rix Inclusive Research as a Rix Wiki Champion due to her fantastic work with use of Rix Wiki’s.

My name is Sophia Schwarze and I am a student at the Health Professions school at Samford University in Birmingham, Alabama. In the spring of 2016 I was given the opportunity to study in London. It was my advisor who encouraged me to apply for an internship. Being only a second year in university I knew that finding an internship would be a bit more difficult. Although I am studying to become an Occupational Therapist, it was my passion for working with individuals with intellectual disabilities that opened the door to a small organization called Rix Inclusive Research.

Rix Inclusive Research is a company out of the University of East London that uses Multimedia Advocacy and person-centered planning to promote self-advocacy and human rights of individuals with intellectual disabilities. Having done a lot of work in this community I was somewhat aware of the various technologies used to help individuals with communication but ‘Multimedia Advocacy’ and ‘person-centred planning’ were concepts that I had never heard of. When I was first given the notification that I would be interning with Rix I was both excited and nervous. I had never interned before nor had I ever worked in an office.

It became clear very early on that there would be no micro-managing from the staff. On the first day I was given an assignment and everyone went back to doing their own work. At first I felt I might be uncomfortable with this approach but it was this trust and independent environment that really pushed me to become both more confident and more comfortable in my abilities. I never realized how much I relied on the direction and the confirmation of others. Sure I am a perfectionist and I want to make sure that I am doing the work properly the first time but Rix showed me that being confident in one’s own work and abilities from the beginning makes for a more productive and better employee.

Rix provided me with incredible opportunities both in and out of the office. I was given the opportunity to go out on my own and conduct interviews with Wiki users. Although it is primarily used for people with special needs, the Wiki’s function has been modified for a variety of different groups. Recently the Wiki has made its way into the mental health community. Whether it is being used as a personal recovery plan or as a communicative aid, the functions of the Wiki are designed to best suit the needs of the individual. One of my main tasks was to write case studies of individuals using wikis within the mental health field. It was incredible to see how a single product could be transformed to fulfill the personal needs of one individual. Having never conducted an interview before I had a lot to learn but of course with practice comes knowledge and eventually skill. Through the interviews I was able to meet some incredible people and see the Wiki being used in everyday life scenarios. I learned how to ask questions, how to gather material, and how to compose it into an article that truly reflects the individual’s story and feelings.

One of my favorite opportunities was being able to work with Ajay. Ajay, also known as the Wiki Master, is an employee and spokesperson with learning difficulties at Rix. Recently Ajay had been enrolled in a European Computer Driver License course which covered computer software programs such as Microsoft Word, Excel, Powerpoint, and Project. On Wednesday afternoons Ajay and I would go through the modules and quiz questions together talking things through and coming up with fun ways to memorize the material. Working with Ajay was not only fun but it gave me a glimpse into the kind of work I would be doing in the future and I have to say I am pretty excited.

Communication is something we use everyday and often we take it for granted. For those with intellectual disabilities or mental health challenges, being able to communicate can be difficult. Rix has dedicated itself to improving the lives of these individuals by giving them the tools they need to vocalize their thoughts, needs, and aspirations. Whether it is through video, picture, or text, every person deserves to have a say in their own lives and wellbeing.

Rix is something really special. The work that they do and the people they serve says a lot about the kind of people who work within its walls. Although it is a small team, everyone is extremely hard working and supportive. They have taught me so much and they have given me so many opportunities to be apart of something so much bigger than myself. It has only been three months but I am going to miss seeing the people here and I can not wait to see what amazing thing they do next.

On Wednesday 2nd May 2016, Rix Inclusive Research along with their London Scholars and colleague Darren Sharpe from IHHD (Institute for Health and Human Development) at the University of East London, hosted the first Rix Innovation Lab.

The innovation labs aim to aid in creating a Rix Wiki Evaluation Toolkit. The aims of this toolkit will be to develop a framework to sustain the use and implementation of Rix Wikis, within schools, health and social care services, as well as capture the impact of Rix Wikis within these services.

The day was attended by various professionals from a range of schools, services and local authorities and some great discussion were had.

The event consisted of discussions on the following topics:

• How the Rix Wiki corresponds with Legislative framework, such as Mental Capacity Act, Care Act, SEND Reforms etc.
• Why each service/organisation purchased the Rix Wiki?
• How each service/organisation is using the Rix Wiki?
• What processes are in place and what are the KPI’s (Key Performance Indicators)?
• Current evaluation processes?
• What needs to be evaluated?

The discussions were all very interesting and we will now look to use these discussions to prepare for our second Innovation Lab.

We would like to thank everybody who attended, your contributions were greatly appreciated, and we look forward to seeing you all at our second Innovation Lab!

Another thank you to our Graphic Facilitator for the day Charlie Minnion, who was able to capture all of our discussions in a graphical illustration.

Santino Vassell is an associate peer recovery trainer at CNWL’s Recovery and Wellbeing College. He teaches a course at the college working with individuals with mental health and learning difficulties and he refers to this as his first real job. Santino is able to offer a unique perspective in the college as he himself has a learning disability as well as a mental health disability.

Santino was first introduced to the Rix Wiki in the summer of 2014 by his friend and Deputy Manager at the college, Amanda Bailey.

“At first I thought it was going to be really hard,” Santino says, “but I’m really enjoying it. The Wiki is simple and straight to the point.  It’s interactive and easy to use.”

He attended a two-week Wiki Builder’s course with two of his fellow recovery trainers. Santino enjoys the person-centred structure of the Wiki and says that this makes it easier for people with mental health and learning difficulties to express themselves. He describes a Wiki as a story about you, told by you. “You can put your own pictures, your own writing, and you can even put your favourite songs on it! It’s a fabulous and brilliant tool.”

The Wiki is entirely owned by the user and he or she can choose who else can see the Wiki, and whether they see either the whole Wiki or only a specific section or sections.  “I also like that the Wiki is completely private and only the people I want to can see it, so it can be used to communicate with doctors and other professionals,” he adds.

For Santino, the Recovery College has not only given him a new beginning, but a job that he loves and allows him to do what he is most passionate about – helping people. The Wiki is a tool that helps Santino to do his job. “Using my Wiki helps me to express myself to other people. It helps me to encourage and support others. I have a Wiki so that I can help people like myself.”