Social media in action
This section describes some examples of how different kinds of organisation are engaging with social media such as Facebook and Twitter to foster debate, promote their interests and communicate information. It is, however, important to recognise that social media is not a panacea and the challenge for all groups is to see how others use various media, learn and innovate.
The Princess Royal Trust for Carers has a network of 144 independently-managed Carers' Centres, 89 young carers' services, and interactive websites (www.carers.org, www.youngcarers.net), which deliver 24 hour support to over 424,000 carers and approximately 25,000 young carers. The Trust has a Facebook group for carers. The Princess Royal Trust for Carers in Scotland claims that a presence on Facebook was a vital factor in getting the concerns of unpaid carers onto the political agenda in the 2011 Scottish Parliament election. A dedicated Facebook page, Carers Votes Count, was set up to update carers and others on policy pledges made by the political parties and to engage carers in local and national campaigning. According to the Trust's Director in Scotland, Florence Burke, campaigning on the internet is ideal for many carers (Naysmith, 2011):
If you are trying to combine a caring role with a job, or with looking after a family of your own, that can make it [demonstrating at Parliament] impossible. But if 3am is the only time when you can be active, you can do that on Facebook.
Carers Votes Count continues to host a vibrant debate, for example, on the likely impact of the Christie Commission report (Scottish Government 2011)
- Facebook https://www.facebook.com/carers
- Wikipedia http://en.wikipedia.org/wiki/The_Princess_Royal_Trust_for_Carers
- Twitter @CarersTweets
Enabled by Design is a community of people who are passionate about well-designed, everyday products that challenge the one-size-fits-all approach to assistive equipment. At the first Social Innovation Camp in 2008, Enabled by Design was awarded first prize as the "project with most potential". Enabled by Design encourages people to share their views and experiences of assistive equipment, share wish lists about improving products and services, and post information, reviews and comments. It is an excellent example of a website that encourages service users with a disability to share information and thoughts about products and services that are improving the quality of people&'s lives.
- Facebook https://www.facebook.com/enabledbydesign
- Twitter @enabledby
- YouTube: http://www.youtube.com/watch?v=0lOS5lMi9-w
Action on Hearing Loss has pioneered the use of video stories as an engaging way of delivering annual reports. The organisation holds "social media parties" online, in places like Twitter, Facebook and YouTube, which have increased user interaction by 416%. The chief executive regularly raises the organisation's profile by taking part in live Twitter Q&As.
- Facebook: https://www.facebook.com/RNID.Fanpage
- Twitter @actiononhearing
- YouTube: http://www.youtube.com/user/rnidwebteam
- Flickr: http://www.flickr.com/photos/rnid/ Source: Survive and Thrive (2011) RaceOnline 2012
The Macmillan Cancer Support website offers a wide range of resources including forums, social media and support groups, covering practical and emotional issues, coping with loss, treatment and surgery, living beyond cancer and support from friends and family. In 2010, it had 92,729 unique users and a high level of interaction.
Comments from members about their internet support:
"I'm only strong and positive because I can go online and be as honest as I like about how scared I am. I'll have people there who can get me through it, and then I can get back to the rest of my life."
"I think if it wasn't for the Internet I'd have probably fallen apart because you feel like you have to turn somewhere and the Internet is the safest place to do it."
"There are people out there that need help, and people that are willing to give it. And I think that's what makes the Internet so great because there are no boundaries. There are no "open hours" if you like. There's always somebody there."
- Online Community: http://community.macmillan.org.uk/whatsnew/default.aspx
- Facebook https://www.facebook.com/macmillancancer
- Twitter @macmillancancer
- YouTube: http://www.youtube.com/macmillancancer
- Flickr: http://www.flickr.com/people/macmillancancer Source: Survive and Thrive (2011) RaceOnline 2012
The Broken of Britain aims to provide a voice for disabled people by campaigning about the impact of the proposed welfare reforms, and the negative coverage of disabled people in the media.
Martyn Sibley, a service user in a wheelchair, has used his personal experiences to develop "Seminar in your Slippers" a series of 45-minute online sessions providing information to people living with long-term health conditions and disabilities.
A Writer in a Wheelchair is a blog by a wheelchair user and disability advocate who was one of the organisers of the online One Month before Heartbreak campaign which highlighted how the proposed changes to the Disability Living Allowances Allowance reforms could adversely affect disabled people.
Can-Do Ability is a blog written by a 25-year old Australian wheelchair user whose objective is to help others with disabilities find answers and solutions to questions that might come up by sharing her personal experiences.
LiveWorkPlay is an international example of using social media to grow a community of interest. It sets out to educate the world about what people must do as individuals, organisations, and governments to respect people with intellectual disabilities and their rights in support of a more inclusive community. LiveWorkPlay has more than 2100 Twitter followers, more than 2300 Facebook fans and a popular YouTube channel.
Using social media, the volunteer recruitment campaign tripled the core volunteers from 30 to 90 in less than six months.
- Facebook https://www.facebook.com/peoplefirstottawa
- Twitter @MyLiveWorkPlay
- YouTube: http://www.youtube.com/liveworkplayvideo
Netbuddy is for swapping practical tips and information on all aspects of supporting people with learning disabilities. The site includes forums and downloadable information packs.
VIKs - Very Important Kids is a three-year lottery funded initiative with Young Minds UK which campaigns to improve mental health services, raises awareness about young people's mental health and well being, and increases young people's involvement in service and delivery
This is a vibrant organisation with an engaging website promoting positive mental health for young people.
Carers UK seeks to improve the lives of the UK's six million carers and has an extensive social media presence. In 2010, Carers UK enabled more than 200 carers and professionals around the world to participate in their international conference by broadcasting it over the Internet, saving an estimated £100,000 in travel costs and expenses. It also broadcasts a monthly radio programme
- Facebook https://www.facebook.com/carersuk
- Twitter @CarersUK
- YouTube: http://www.youtube.com/CarersUK
- Vimeo http://vimeo.com/user3948150
- Flickr http://www.flickr.com/photos/carersuk Source: Survive and Thrive (2011) RaceOnline 2012
Chill4usCarers actively uses social media to raise awareness and support for carers. The Carers' forum provides information, news and views. Chill4usCarers organises Computers4carers which provides free computers for carers. It also offers a chat room, open 24 hours a day
Brighter Future Workshop is charity specialising in the repair, service and sales of new and used mobility equipment including three and four wheel mobility scooters, self-propelled and transit wheelchairs, power chairs, tri-walkers, rollators, lifting aids, tyres, tubes, batteries and other disability equipment. It offers a recycling facility so that equipment that is no longer needed can be re-used.
- Twitter @BrighterFuture1
- Ebay http://stores.ebay.co.uk/Brighter-Future-Mobility-Equipment__W0QQ_armrsZ1
Healthtalkonline is the website of the DIPEx charity and enables people to share in more than 2,000 people's experiences of health and illness. It offers videos, interviews and case studies of people's experiences. The information on Healthtalkonline is based on qualitative research into patient experiences.
Health Unlocked is a social network for patients and caregivers which enables patient membership groups to become health focused social networks. It aims to gather the knowledge and experience of patients and to share it with a wider patient audience. It is believed that providing information and a sense of support can reduce the isolation and fear of people facing chronic conditions. The difference between HealthUnlocked and other social networks is the level of moderation by the trusted patient groups and charities.