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.

MEDICI YouTube channel

Conference presentations

Able to Include

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.

woman with laptop
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!

Find out more and apply here

Digital Lifeline | AbilityNet

 

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.

Why is ‘About me’ information so important to capture in our standards?

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.

photo of young 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.

PRSB Standards