I’m Claire, the Parent Rep for Northampton and each month I am planning on giving you a little bit of an update as to what we have been doing.
Hopefully many of you know by now that there are a number of SWAN UK volunteer Parent Reps across the country that are helping to support other members, raise awareness, and affect change.
We all have slightly different views on the role, and all do slightly different things, however, our goals are all the same. We are all members of SWAN UK, and we all volunteer our time each week to a cause that is very close to all of us, giving us the motivation to spread the word, and make positive changes for our unique community.
Some of us spend a lot of time talking with professionals and sitting in lots of professional meetings, being the voice of the undiagnosed community, making sure we are heard, and ensuring they are aware of us, our children, and what we do. Others prefer to hold coffee mornings, arrange events, leaflet drop, and email professionals to try and find new members, so that they too can receive the support we do. Each one of us is very different, but we all have the same goal, and that is to work towards SWAN UK’s Big Ambition.
Our Big Ambition is that all families who have a child affected by a syndrome without a name get the support they need, when they need it.
Throughout the last few months a number of Reps have been trying to get regular coffee mornings going in their areas, trying to find the best locations, and days of the week for the current members, building your local networks, one coffee at a time!
There have been coffee mornings in Bedford, Northampton, Leeds, Nottingham and Bristol. Some have had more success than others, but if you’d like a coffee morning, let your Rep know or give them a hand! If you don’t have a local Rep you can organise one yourself with the support of a Rep, or Lauren, Miriam or Mary! Nottingham have their next coffee morning in the February half term if you’re looking for something to do, and Jo, Parent Rep for the East Midlands, assures me there will be activities available for the children too.
Along with the regular coffee mornings, we’re trying to set up regular stay and play type sessions (still looking for a good name for these!) just for SWAN UK members which you can attend on a set day each month. These are being trialled at Swings and Smiles in Newbury, and Snoezelen in Worcester, with a few more being investigated in different areas. Again, if you know of a good place to hold one, give us a shout!
Throughout December a number of local networks organised Christmas trips, and days out! There were many Panto trips, oh yes there were! Many members never felt they could take their SWAN to a panto, but tried it as a group, and loved it.
As a Rep it was fab to see so many children attend their first panto, and many families all together smiling!
Sundown Adventure Land organised by the Yorkshire reps Michelle and Lisa was a hit as always! And a Christmas Party in the Northwest with Tina, along with a Winter Wonderland trip in Telford with another Tina. There are also some days out coming up, which have all been researched, organised, created and coordinated by Reps! Keep an eye out in your E-news for information on those as well us on the SWAN UK website: undiagnosed.org.uk/news-events
Another task a lot of us keep on top of is leaflet drops! From schools, to hospitals, nurseries to SEN groups, child development centres (CDC) play teams! I have dropped leaflets and posters off to CDCs and the children’s outpatients department at Northampton General Hospital, Emma has dropped some off at CDC in Bedford, and Aimee has made sure Warwick Hospital have them too. We’ve also made sure that many other CDCs and children’s outpatients departments have posters and leaflets displayed on their boards. If you see them, give us a shout or maybe take a selfie with one to share with us! If you don’t see them, let us know and we can drop some off (or find out where they are).
I also had an amazing opportunity to write a short article for the local SNIX (Special Needs IndeX) magazine that is sent out a couple of times a year! The next one is due out in Northampton during the February half term. You should get a copy of this magazine if you’ve registered with them and live in Northamptonshire. If not, let me know. Let me know if you can see my article in there!
Many Reps also attend meetings and conferences with other professionals, both with local services and larger groups of influential professionals. Last month Michelle went to a talk with an equality helpline, and is trying to get them to signpost some of their callers to SWAN UK. I have been to meetings with our local Parents’ Forum Group, who are really quite influential in Northampton. Louise and Marie have attended a genome editing workshop and I can’t wait to hear more about that! Aimee has spoken to a rather large group of Paediatric Consultants at Warwick hospital, and is organising advertising on their TV advertising system!
We are also adding eight new Reps to the crew, who are currently working their way through the induction programme, and are eager to get going in their new roles, even organising events before beginning their induction. They will be covering East Sussex (Marie), Croydon (Natalie), Newcastle (Fiona), Scotland (Lorna), Shropshire (Tina L), Stockport (Tina N), Walsall (Kat), and Yorkshire are getting themselves another rep too (Sara)!