Feedback from this week's online meeting

On Wednesday I met with a small group of people affected by Parkinson's - most of whom use our forum. We had a really good discussion, and came up with some positive ways forward. Here are some of the main themes from our conversation.

Raising awareness
People talked passionately about their experience of living with Parkinson’s and how difficult that could be. The big concern was the lack of public understanding of Parkinson’s as a complex, fluctuating condition that could affect people of all ages.

The group was really positive about the support the charity offers, through the branches, improved helpline service and our UK network of information and support workers

But too often people didn’t find out about this support until long after diagnosis. We talked about how we need professionals to consistently signpost people with Parkinson’s to the organisation and some of the ways we need to tackle this. We also talked about making our branches and support groups easier to contact.

Changing to Parkinson's UK
Our forthcoming name change to Parkinson's UK and our new look were seen as an important way to help us reach more people. There was a view that the charity needed one clear, simple message. Some people thought the range of messages used on placards to illustrate the new branding had been confusing. They had led some people to think that these slogans were the basis for a major publicity campaign, which is not the case. We discussed media plans for Parkinson’s Awareness Week This will focus on getting people’s real life stories across in features, rather than trying to develop a news angle that would be in direct competition to the general election.

The right message for different audiences
We reflected on the tension between giving positive and inspiring messages for people living with the condition yet needing to show just how challenging Parkinson’s can be in order to drive forward our fundraising and campaigning.

We also talked about the power of having people’s experiences right at the heart of the charity, using photographs and messages from real people and making sure they are supported to speak out, in the media and on public platforms. The group felt our communication of who we are and what we stand for should focus on those who are new to the charity, rather than people we’re already in touch with.

The online forum
People said they found our discussion forum extremely valuable, including those who are members of other online communities. There’s scope to make the format of the forum more varied and interactive whilst keeping it simple to use. Users commented that the atmosphere on the forum can sometimes be intimidating and make them reluctant to express their views and get involved.

Engaging with people affected by Parkinson's
We underlined the importance of listening to people with Parkinson’s. We discussed how this happens on a daily basis and is embedded in all areas of the charity’s activity through advisory panels, focus groups and user evaluation. Hundreds of people affected had been involved in the work developing our new name and identity and over a thousand had sent in their placard suggestions. The group talked about how people on the forum could be more involved by holding this type of discussion regularly.

Overall people found the meeting enjoyable and worthwhile, though there were technical difficulties that made it hard for some to participate. We agreed to explore simpler technology for the next meeting and we’re now looking for suggestions about the themes people want to discuss.

What would you like to talk about?