Information Exchange Day

By Amy Deakin, Policy and Information Intern, Down’s Syndrome Association

Last Saturday, I had to get up at 5am to drive to Fulborn in Cambridgeshire. Why? I was heading off to meet some DSA local groups for our East of England Information Exchange Day.

There’s no question about it – DSA local support groups are amazing. From parents’ meetings to fundraisers to trips to Thorpe Park, local support groups get up to a phenomenal amount. They are, it has to be said, a fantastic, dedicated group of people, doing incredible things for people with Down’s syndrome and their families.

Back at the DSA Head Office in the wilds of Teddington, we know how important it is to keep in contact with what local groups are doing. This is where Information Exchange Days come in. So, several times a year, we meet up with group representatives across the country, learn about their work and find out what we can do to help.

Last weekend, four DSA staff trekked to the Cambridgeshire Mencap building to meet representatives from: the Up on Downs group in Hertfordshire and Stevenage; Extra 21 based in Essex; groups in Peterborough, Bedfordshire and Suffolk; and Cambridge Babies and Toddlers with Down’s Syndrome. They were all a lovely group of people and it was well worth getting up early to meet them.

After fuelling ourselves with tea, coffee and plenty of biscuits, Stuart, our information officer, and Xanthe, who runs press and campaigns, welcomed everyone and talked us through what the DSA has been getting up to. The groups really enjoyed hearing about what we do and many had already been involved in our campaigns. Several people told us they found our Tell it Right training really useful, and one person shared how she, despite her initial scepticism, had been overwhelmed by the great quality of their local DS Active tennis club in Aylesbury.

Rather than letting us talk all the time, the aim of the event was to hear what the groups had to say. Their feedback was brilliant – key issues raised were their need to connect better with other groups, how to share the workload of running a busy group and reaching out to more members. We were grateful for all their thoughts and suggestions which were taken back to the DSA office for discussion by the communications team.

After a very tasty lunch, we got back together to find out what activities the groups were doing in their local areas. I have to say, the sheer level of activity was a bit overwhelming! Groups told us they were holding training events for local schools, social clubs for teenagers and parent and baby meetings, sending out newsletters, meeting new parents in their area, running impressive fundraising events and generally fulfilling the needs of the people they support. However, there were common areas which people found more of a challenge. Several groups told us that, as their children grew up, the needs of their group changed, and they had to adapt. Many found it harder to find activities for teenagers and adults, and for one group this problem meant their group had lost momentum. Everyone agreed that groups need to change with their members, and that by listening to others and support groups, especially the smaller ones, they would be able to do more.

Getting back in the car to brave the M25, I have to say it was a thoroughly enjoyable way to spend a Saturday. It was great to hear from these local groups and for all to share their ideas. Everyone really engaged with and listened to each other, which was fantastic to see. Bring on the next one!

The DSA holds several Information Exchange Days throughout the year. Our next day will be in the East Midlands in November – date and venue to be confirmed. For more information or if you are interested in attending, please contact Stuart Mills at Stuart.Mills@downs-syndrome.org.uk.