Dementia Choices Action Network (D-CAN) – Starting out using video to share

Last week I was very fortunate to be involved, as videographer and digital storyteller, in the inaugural National Assembly of the Dementia Care Choices Action Network (D-CAN). D-CAN brings together a number of stakeholder organisations with an interest in Dementia with NHS England and Improvement, Alzheimer’s Society, the Coalition for Collaborative Care and others, including people living with Dementia. A key aim of the network is to embed the principles of Universal Personalised Care (UPC) into the practice of supporting people with Dementia across the Health, Social Care, and voluntary and community sectors. D-CAN aims to provide a space wherein innovative practice and lived experience can inform practice at all levels.

i am pleased and excited that D-CAN has begun by recognising the power of video in disseminating messages and ensuring that members can learn from each other. Members want to break down the walls that exist between professional disciplines, between different organisations, between organisations and patients, and between people in the room at meetings and those who can’t be there. And it is this latter aspect that I want to talk about here. I have long believed that the public and non-profit sectors are failing to take advantage of the tools that the internet has given us to communicate beyond normal boundaries. Particularly where organisations are seeking to communicate messages and engage people in their work, it seems self-evident to me that using online video and social media will spread their reach far beyond the walls of the room they are in. That this is happening far too infrequently is a great source of frustration. Ian Donaghy, who hosted the Assembly, mentioned a number of online video resources during his comments, and he asked the audience who was aware of them. Very few of them were, and this is telling.

Stepping away from the direct field of Dementia for a moment, I am going to cite the case of Molly Watt. Molly is an inspirational young woman who lives with Usher Syndrome (which causes deaf / blindness). She has created her own Foundation, works as an accessiblity consultant, and uses online video and social media to document her life and how she uses new technologies to live as full a life as possible despite her limited vision and hearing. I know that she has provided inspiration for many others living with the same condition and given them confidence to overcome the barriers they face to achieving their ambitions. Peter Berry was diagnosed with Early Onset Dementia at the age of 50. He has made more than 100 of his weekly video diaries documenting the challenges of living with his condition. Usually his diaries are just him and his camera, but he has occasionally involved his wife, his daughter, and friends to give a perspective on what it’s like living with someone who has Peter’s conditon. A few years ago I was videographer at two North Wales Dementia Meetups. At the first event I interviewed a number of people in the audience who were living with Dementia. Several of them told me that their diagnosis had left them depressed and despondent. A year later, at the second event, some of those people were on the platform telling their stories and recounting how the first event had given them inspiration to turn their lives around and take positive actions to overcome the limitations of their condition.

OK, so the last example is about inspiration coming from the people you directly interact with, but there cannot be any denying that online video amplifies and spreads the ability to learn from how others do things. And that these lessons are all the more powerful when they come from people like you, living daily with the condition you live with than from official sources.

The fact that D-CAN is making some steps towards recognising that online video has a role to play in connecting people beyond physical meetings is, to me, a great, positive step forward. I believe we need to build on this step and roll the use of video into further meetings and into helping those living with Dementia to learn from each other. And we need to extend this practice into many other areas and many other conditions.

The growth of the internet has brought with it an explosion in the use of online video. More than a year ago, a report was published which showed that young people watch Netflix more than they watch the BBC. The millions of hours of online video which exist represent a major learning opportunity that, by and large, our public institutions are not making adequate use of. And they need to be seeding this resource with their own content that people can draw on. I am hopeful that D-CAN can be part of this process.

All the video from the first National Assembly of D-CAN can be viewed here. The video below, of the delegate interviews starts with Christopher Richmond, who lives with Dementia himself, telling his story. This is just the kind of thing I want to be able to support more of.

===========================================================

While you are here, can I please ask you to take a minute to subscribe to my YouTube Channel here

If you would like to support me to do more of my work in using Digital Storytelling, social media, and video for social good, please consider making a regular contribution via Patreon or perhaps, just buy me a coffee here

Could you Sponsor a Live-Stream?

Photo by Duncan Morrow

 

I am looking for sponsors. Does your organisation want to raise its profile in the Public, Charitable, or non-profit sectors?

As long-time readers of this blog will know, I specialise in high-quality, low-cost, live video streaming for non-profit organisations. Not all organisations in these sectors can afford even the low prices I charge to stream their events. So, are you a company or other organisation that wants to raise its profile in the sector? Why not consider sponsoring a live stream for a non-profit event? This can be an event  that your organisation is already present at, or it might be something you want your audience to be able to watch, or it could just be in a market where you want to get involved.

Please get in touch for a chat about how we might work together.

===========================================================

While you are here, can I please ask you to take a minute to subscribe to my YouTube Channel here

If you would like to support me to do more of my work in using Digital Storytelling, social media, and video for social good, please consider making a regular contribution via Patreon or perhaps, just buy me a coffee here

27,000 people at a Local Authority Committee Meeting?

At the recent #NotWestminster event I asked if any local authorities were streaming meetings via Facebook. No one present knew of any, and quite a few people there expressed doubts that doing so would be a good idea as they would be fearful of the kind of comments that would come in during meetings.

And then, yesterday, my attention was drawn to a Facebook Live stream of Luton Council’s Development Control meeting, which was actually being done by the local BBC radio station, BBC Three Counties.

Now, this meeting was very high profile, as the main item on the agenda was a proposed development which included the building of a new stadium for Luton Town Football Club. But, nevertheless, it illustrates my point that this is something that local authorities should consider, as the level of engagement during the meeting would be higher than if they continue to stream via self-contained platforms.

Yesterday’s meeting was broadcast in two halves.

Part one is here. At the time of writing this, this video has had more than 19,000 views and attracted 1,655 comments.

Part two is here. At the time of writing this, this video has had more than 27,000 views and attracted 2,936 comments.

Now I know this meeting is a special case. But I still contend that using Facebook Live to stream Council meetings has to be tried as a way of engaging the public in council business. I can help you do this. If you’d like my help, please get in touch.

After all, there aren’t many Council committee rooms that could accommodate 27,000 members of the public.

===========================================================

While you are here, can I please ask you to take a minute to subscribe to my YouTube Channel here

If you would like to support me to do more of my work in using Digital Storytelling, social media, and video for social good, please consider making a regular contribution via Patreon or perhaps, just buy me a coffee here

Christmas is the Season of Storytelling

Christmas is the season of storytelling. Of course, it is inspired by what many (not just John Wayne) consider to be the “Greatest Story Ever Told”. In recent years it has been the excuse for retailers and marketeers to role out their best efforts at story telling in the form of their Christmas adverts.

I came across the video below on Linkedin when it was shared by Linda Vernon. It’s a great piece of storytelling by the Chartered Society of Physiotherapists about the benefits of their members’ work, and it’s Christmas-themed. It rings all my bells as telling the stories of the benefits of the work of professionals who provide a vital service to our society.

 

Which brings me to #Brexit. Bit of a stretch, maybe, but bear with me. Yesterday, while making some lunch, I turned the radio on and I heard someone say, “the position on Brexit has changed because there are now so many more facts available”. That is, of course, patently absurd. There are no more facts about Britain’s relationship with the EU now than there were at the time of the Referendum in 2016. What has changed is that more people are aware of the facts, and that awareness, in some cases at least, has made them question the decision they made in 2016. I used to have a job which required me to sit on lots of different EU funding committees. Time-and-time again at these meetings I heard European Commission officials complain that the British partners were failing to meet the requirements to give due publicity to the fact that projects were funded by the European Union. Now I was convinced then, and I am even more convinced now, that this was a deliberate strategy by British governments, of differing political hues, to ensure that they, rather than the EU, were able to take the credit for the investments taking place. Is it any wonder, therefore, that the British public were unaware of the benefits of being part of the EU when they were deliberately obscured from them? And, as we are all too aware, in many cases, the areas which have seen the biggest EU investments are also those which voted most strongly for Brexit.

Stories are important, and the EU Referendum of 2016 was won by those who told the most compelling stories, while those on the other side were mainly those who had been suppressing stories about European successes for decades.

I rest my case about the power of storytelling. If I can help you tell stories about the work you do, please get in touch.

 

The Chancellor’s Announcement About Rural Broadband – Eventually You Get Proved Right

Yesterday the Chancellor of the Exchequer announced a further funding programme for rural broadband. This is designed to take faster internet connections deeper into the “difficult to reach” parts of the countryside.

There are two notable things about the proposed strategy here. The first is that it is based on what is called “full-fibre”. That means fibre optic cable right into the premises, not, as has mainly been the case to date, running fibre to street cabinets and then relying on the ancient copper cables to take the signal the rest of the way. This can be for miles in some rural areas, and the signal degrades over copper, whereas it doesn’t over fibre. Some of us have been calling for a “full-fibre” strategy for years, and, at last the Government has caught up with this, but only after wasting millions of pounds on propping up the antiquated copper telephone network.

The second notable element is that the new strategy is based around connecting up public sector buildings, especially schools, to the fibre network, and then connecting up the remainder of the community from there.

In 2011, redoubtable broadband activist Lindsey Annison had a plan identical to this to connect up the community of Warcop in Cumbria. Below are some videos I took on the Fibre Walk she led over the proposed cable-laying route. This plan could not be implemented because we were told that it was not feasible for schools to share the connections with non-educational sites. That policy has now been over-turned, but only 7 years later. How much time and money has been expended in pursuing temporary solutions till now?

It is good to be proved right, but why does it have to take so long?

Live-streaming a Patient Participation Group

I am very excited that this Thursday I will be undertaking what I reckon must be a world-first; I’ll be live streaming a Patient Participation Group (PPG). From 6:45pm, the Library House Surgery PPG in Chorley, Lancashire will be live streamed on the surgery’s Facebook Page. I have long been an advocate for live streaming as a means to involve people in the work of public agencies, and I am very pleased to be part of this groundbreaking opportunity to open up the PPG to those who cannot attend meetings.

I am happy to be working with Healthier Lancashire & South Cumbria and Redmoor Health on this initiative.  For any organisations who want to do something similar to engage wider audiences in their work, please get in touch.

Here’s my YouTube video trailing the event.

Thanks for reading.

If you are not already subscribed to my YouTube Channel I’d be really grateful if you could do so as I urgently need to get to 1000 subscribers http://www.youtube.com/c/JohnPophamUK.

And if you like my work, why not consider supporting me on Patreon or via PayPal.

Many thanks.

 

 

Engagement has to be Fun

I present the Bradford Safeguarding Adults Board Community Engagement Event – held on 27th June 2018 at Manningham Mills Community Centre

It was a real privilege to be part of this event. I think the video pretty much captures the essence of the day, which was described to me by one of the participants as “joyous”.

“Joyous?” I hear you ask, “but isn’t Safeguarding a really serious, and potentially scary, issue?”. Safeguarding is certainly serious, but there is a pressing need to make sure it is more widely understood. And it is commendable that Bradford’s Safeguarding Adults Board is committed to making sure that the most vulnerable people in society not only understand the nature of abuse and what can be done about it, but that they can also contribute to the strategy being implemented across the District to keep residents safe. An important element of the Board’s approach is attract people to participate in setting policies and strategy by ensuring that events like this are fun, and genuinely engaging.

So people had a lot of fun at the event, and in amongst the fun, they learnt some really serious stuff; they were provided with tools to deal with abuse in their own lives, they learned about different kinds of abuse, and they contributed to the Safeguarding Adults Board’s strategic plan. And they did all this because they wanted to, not out of a sense of obligation or duty.

I found it particularly encouraging that storytelling was central to much of the message of the day, with a powerful video illustrating a particular kind of abuse, and participants being encouraged to use picture stories to explore issues. This was just one day, but it brought together individual service users and organisations that support their participation on a regular basis. Personally I believe that storytelling, and participation in storymaking, has to be deployed on a wider basis to develop understanding of complex issues and ensure that consultation is genuinely informed via deep understanding of the issues.

I was proud to be part of the day as part of my mission to raise the profile of social care, of the fantastic work so many social care organisations do, and the difference they make to people’s lives. And a key part of the message, which the Safeguarding Adults Board, and other social care organisations in Bradford are central to, is the emphasis on social care being an empowering service which provides the underpinning for people to live full and fulfilled lives in recognition that people know best what is good for them, and the role of professionals is to support them in achieving their personal goals.  In this year when we celebrate the 70th birthday of the NHS, it is vital that we also recognise that the same act gave birth to the modern social care system, and that the two are different sides of the same coin.

There is a playlist of videos illustrating what participants said about the day here, and the presentations and games played on the day are below.

 

Why I do Digital Storytelling

This is a brief post about why Digital Storytelling is so important to me.

I believe the world needs to change so that there are more opportunities for people to improve their lives, so that organisations are more responsive to people’s needs, and so that power structures are more representative of the diversity of society.

Every day I come across examples of great initiatives which are contributing to these objectives, but all too often they exist in isolation from each other and from policy and power mechanisms which could translate them into coherent social movements.

As an example, I have only today seen someone from a major organisation revealing in a tweet that they have only just become aware that Britain has a Housing Crisis.

The digital storytelling I do aims to shine a light on people and organisations doing great work to make the world a better place. The most powerful stories of all are those which enable the people who benefit from such work to describe and demonstrate the difference it has made to them.

Here are some examples:

Most people think that social care is in terminal crisis. While no one could deny there are huge problems, every day millions of people work to deliver the best care they can in challenging circumstances.

Policy makers have for years believed that Britain’s South Asian communities did not want professional social care organisations interfering in their family relationships. Probing beneath the surface can reveal the truth.

All too many people believe that a diagnosis of dementia is a death sentence. Events like the North Wales Dementia Meetups prove that people can continue to live fulfilling lives with the condition.

It is not true that older people don’t use technology. Some get great benefits from it, but most don’t. Here are some of those who do use it to enhance their lives.

And sometimes it’s all about having fun.

 

I’d love to help as many people as possible to use this kind of storytelling in their work. If I can help you, please get in touch

Technology Overcoming Rural Social Isolation

 

A couple of weeks ago I was working at a fabulous, inspirational event, the World Health Innovation Summit Fylde Coast (#WHISFC18) held at the Winter Gardens (above) in Blackpool. If you are not familiar with the umbrella body, the World Health Innovation Summit, check it out here, but, in summary, it is a rapidly growing movement of healthcare professionals and patients dedicated to putting people in control of improving their own health.

This is the first of a series of blog posts stimulated by the people I met and the initiatives I learned about at #WHISFC18.

Professor Niall Hayes is Professor of Information and Organisation at the University of Lancaster. As I was interviewing him for the video below, I became increasingly excited about what he was saying, as I recognised how it accorded with my own interests and ambitions. As part of an EU-funded project, Niall and colleagues have been developing an app called Mobile Age which aims to overcome social isolation among older people in rural South Cumbria. Here Niall talks about the principles behind this work.

 

I chatted further with Niall over lunch, and then he started to demonstrate the app, so I whipped out my camera and captured his explanation (see video below).

Mobile Age is a social connectedness app. It has been co-created with older residents of South Cumbria. At its core is open data about local events which people can use to plan their itinerary and ensure they can get out and about. It encompasses the ability to add events to a calendar as older people often enjoy constructing an agenda for the week and planning ahead.

Critical to the function of the app is an age-friendly map. This has been designed with clear lines which are more visible than some other mapping systems. The map shows benches, toilets (including available toilets within shops) and bus stops. This allows detailed journey planning to take place, including the ability to plan how to get to and from a venue before darkness falls.

Volunteering and educational opportunities are included, as well as links to vital services.

One of the key elements is the personal profile which allows the settings and itineraries to be saved. It also allows someone working remotely to add items into the profile, meaning that someone more tech savvy who is located distant from the user can help them populate their profile and plan their calendar.

I think this is a great initiative which deserves to be used more widely and replicated for use elsewhere. It epitomises my view that technology can be used to bring people together and to help them interact in the physical world, and that it is in no way de-personalising.

 

Added on 18th July 2018:

In the past couple of weeks I have done some work with the Mobile Age team undertaking video interviews to contribute to the evaluation of the programme.

Also, here is a great explanation of the approach given as part of a news item by ITV Border

 

 

Technology-Enabled Nattering

Last week I went to interview an older man for a project about technology-enabled social care. We chatted for ages. Not much of it was relevant to my commission, but that was fine, I got enough footage for the project, and I was happy to talk. The gentleman had some fascinating stories to tell. One of those stories was about how his adopted son in Australia had bought him an iPad which he uses to “have a long natter” with him, over Skype, twice a week. He has been doing for years, originally using the “Friends and Family” discount option on the telephone, then via Skype on a laptop and now on his iPad. He was explicit that these interactions enhance his life. He also said that the technology-enabled care platform his carers use has made his life better because it means that carers who visit him have to stay for the full-allotted time, and that means they are more likely to chat with him.

I am becoming more and more convinced that technology-enabled nattering is the way to introduce older people to the benefits of new technologies. Many older people love to chat, but don’t have the opportunity to do so often enough. They love to chat, but they don’t love to type. Video conferencing is the way forward.