Rula’s personal experience of giving evidence – Sept 2022

When my dad Jack and I walked out of St. Pancras train station, we hailed a taxi. It was only my third time in a black cab so I felt really excited being in one again. Dad pointed out to me several landmarks along the way to the Abbey Centre where our conference was going to be held. When we arrived, we went to the Abbey Cafe for a quick coffee & cake – first things first!


I was really amazed to see so many wonderful people with Down Syndrome just milling around, talking to each other and getting to know everyone. I met Fionn and his dad Jonathan who were the Advisory Group Joint Chairmen. They were welcoming and extremely kind in making me feel comfortable there.


I saw some of my friends there from one of our Zoom calls. So there had been Heidi Carter and her husband James, Florence Garrett and Edward Daly with his mum Jane, who were on Table 3 with us. They were our scribes, writing down our comments and opinions.


Every so often the Civil Servants circulated around the tables where we were seated, so they used their laptops or notebooks to record their notes on them.


They had given us different topics to talk about ranging from Health and Social Care to Housing, Education and Employment so there was just plenty to talk about on our tables. We actually took turns speaking around the table and then we changed topics, which was fascinating.


I think everyone felt very confident and at home that day. It was such a great idea to have meetings via Zoom before the day so that we could get ready for the big day and talk about our thoughts & opinions that we, being a part of the Downs community, could bring to so many other people, in order for adults and children with Down Syndrome to have their voices heard.


After the meeting, everyone who could stay on a bit longer had the chance to make a little video of themselves saying what they thought of the day. I really enjoyed that!  


You can see a video of me from the day below.


Rula Sweby

national down syndrome

The NDSPG supports people with Down syndrome to have a say in the formation of policy in matters that impact their lives. 

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