Introducing our new online community!

We are excited to announce that our new online community is now live, and waiting for you to join! Please do check it out and tell us what you think.

You can visit the online community from the homepage of our website. It only takes a minute to register, and once you’ve signed in, you’ll be able to set up your own profile page and introduce yourself to others.

The new community represents the best of our old forums and also incorporates content and features from Netbuddy, which merged with Scope earlier this year.

Those of you are familiar with Netbuddy will recognise many of the features people enjoyed before, including the wonderful community champions, who will be there to welcome you to the site and make you feel at home.

Our community champions come from all walks of life – some are parents, some are professionals and some are disabled people. They have all volunteered their time to make sure the community is a safe, supportive place to be.

In addition to our community champions, we also have a growing number of community advisors, who can answer your questions in their specific area of expertise, such as education, sex and relationships, and behavioural issues. From time to time, they’ll also be joining us for web chats and live events, which you can find out more about in our forum news.

New features

There are lots of new and improved features in the new community too, such as the ‘thanks’ button, which lets you thank people for their advice … and links to social media, so you can instantly tweet or share information you have found useful. Now you’ll be able to follow discussions and topics you’re interested in, and you’ll be notified when people comment on conversations you’ve either started or joined.

You’ll see we’ve set up some groups you may want to join, for example a group specifically for disabled people and a parents and carers group. There are also forums for discussing practical issues, such as work, money, benefits, equipment, technology and education. There are almost certainly going to be others people will want to set up, and we’d love to get your feedback on this. Please let us know if you’d like us to create a new group for you.

This is just the first stage of the new online community.  We’ll be developing it further over the coming months, so please tell us what you’d like to see. Next, we’ll be bringing over the tips from Netbuddy, so this is really just the start.

If you would like to know more about the tips and Netbuddy, you can read the Netbuddy story here. We hope you enjoy using the new community and swapping ideas and information with other people. This is your space, so let us know what you think!

Buddy brilliant!

When Deborah Gundle’s son Zach was born, she knew instinctively that something wasn’t right. At seven months old, he was diagnosed with Angelman syndrome, which meant he’d grow up with profound learning disabilities.

Deborah Gundle and her son Zach
Deborah and Zach today

Looking back, Deborah says one of the things she struggled most with was solving day-to-day problems. “Zach was still crawling till he was about seven, and I spent ages trying different things to protect his knees, which were always rough and bruised,” she says.

“Finally, I hit on the perfect solution – goalkeeper trousers for kids, which were padded in all the right places. But Zach was nearly six by then and I couldn’t help wishing I’d known earlier.”

That’s how the idea for Netbuddy came about. Launched in September 2010, it provided a place for parents, carers and anyone supporting people with learning disabilities to share practical tips and information. The aim was to capture that huge wealth of expertise that parents and carers have, and make it readily available for other people to tap in to.

“It would have been so helpful to have something like Netbuddy, with tips and ideas for all the problems I encountered when Zach was growing up,” says Deborah. “I knew other people had probably solved the same problems I was dealing with, and I wished I had access to their knowledge.”

Unlike other forums or chat rooms, all the information shared at Netbuddy was collected and saved, so people could visit the site and search for tips on specific issues, such as bedwetting, challenging behaviour or a trip to the hairdressers.

Parents could talk to other parents who’d experienced similar issues and find out what worked for them; and they could also share their own breakthroughs within a community that appreciated the hard work that had gone into them.

Practical problem-solving

Netbuddy quickly hit a chord, not just with family carers, but professionals too – occupational therapists, health workers, teachers and physiotherapists, all contributing to help people help each other.

“Netbuddy fills a very basic need for practical problem-solving that everybody has,” says Deborah. “We’ve had people writing in telling us that a tip they’ve picked up on Netbuddy has changed their lives. Sometimes it can be a really simple idea, but it might have given them their first full night’s sleep in 10 years or provided the breakthrough in toilet training they’d been desperate for.

And of course when you’re the parent of a disabled person, caring doesn’t end when they become an adult. Netbuddy offers tips for people of all ages, as Deborah points out: “Zach is 20 now, and he’s going through one of the most important stages of his life – the transition from children’s to adults’ services. I value Netbuddy tips now more than ever, and Zach’s new support workers also find them to be an invaluable resource. That’s what Netbuddy is all about – passing on what you have learned to others who can benefit from it.”

In June 2012, Netbuddy and Scope worked together on a national campaign to raise awareness of the issues faced by fathers of disabled children. The campaign was called Dad and Me, and it was to be the beginning of a close partnership between the two charities, who both shared similar goals of supporting disabled people and their families to have fulfilling lives. In January 2014, Netbuddy merged with Scope to become part of the new online community which launches this week.

“This is a really exciting opportunity for us to reach even more people in the same situation as ourselves,” says Deborah. “I know the new Scope community will embrace the essence of Netbuddy and grow from strength to strength, because people in the disability community want to help each other. If they can offer some support or advice that will make someone else’s journey easier, they will.”

“I would just like to say a huge thank you to all our Netbuddy followers and supporters, who have contributed their time, experience and tips over the years to bring us to this point. We couldn’t have done it without you!”

Find out more about Scope’s new online community.