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SOFT UK Scottish Family Day 2012

The Scottish Family Day took place in November 2012 and was attended by eleven families, including three new families. We had a fantastic family day, including very full creche facilities! It was a great opportunity for the families to come together, to meet our new members and hear the valuable contributions of the professional speakers. 

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 Scottish Family Day changed venue this year to Glynhill Hotel and Leisure Club in Glasgow. This move was decided by the Event Committee in conjunction with the feedback given from last year’s event on the venue facilities and location. Initial feedback on the day, of this move was very positive. We were also delighted to be able to offer crèche facilities again this year which given from last years feedback is important in facilitating families attendance to the day, and I am happy to report we had a full house with a large age range in attendance. The new venue enabled us to have more space this year with 3 separate rooms to hold all our activities throughout the day.

The day started in our base room with a coffee and Family Time an informal opportunity for families, speakers and Trustees to meet and share stories. There were also SOFT materials to browse through, a chance to add to the memory book, and patchwork blanket created last year for our Trisomy children and their siblings. This year had a mix of familiar and new faces and this time was spent by people catching up and meeting new members in small intimate groups.

After this time everyone moved through to the talk room where Demi Powell and Chris Rose (Trustees) gave an update on what 2012 brought to SOFT UK and SOFT Scotland. Starting with a volunteer update and news Trustees are currently looking at setting up Bespoke SOFT training for Befriender’s and sibling specific support volunteers. There was also the news that since last years Family Day the Children with Exceptional Healthcare Needs (CEN) has taken off, SOFT has featured heavily and was involved in consultations for gathering information. Demi attended their conference, which is attended mainly by professionals, with a SOFT stand and was pleased to report information she had taken was snapped up quickly. Also good news that the NHS website now features a link to the SOFT UK website and Demi is planning on working closely with the NHS over the next 2 years. Finally it had come to the Scottish Trustees attention that a debate was be held in the Scottish Parliament on Edwards Syndrome by MSP Richard Baker, Demi will update on this when she knows more.  

Chris then went on to introduce Dr Una MacFadyen, Consultant Paediatrician and SOFT UK medical advisor a welcomed regular, and her guest Fiona Tait. Una was able to give an update on Networks that are available and can be accessed by families supporting children with exceptional care needs, but noted that these can vary in relevance depending or each individual child’s care needs. Una also acknowledged the support given by SOFT for people who decide to have terminations as she felt this is a hugely important area that needs support. Una then went on to introduce Fiona Tait who is the lead for Neonatal Managed Clinical Network in the west of Scotland. Fiona explained she has 25 years of experience as a neonatal nurse and has worked on a Framework for Neonatal Care which is about to be published and is currently working on a report Improving Services and Consistency. Fiona admitted she had never heard of SOFT until Una had contacted her to ask her to attend our Family day but was now very keen to build links and support SOFT in distributing information. Some suggestions on the day were to have a representative come and talk to Neonatal nurses and get a link to the SOFT website on the Maternity App being developed (Ready, Steady, Baby). Discussions were also had on building a database of services for SOFT volunteers to ensure they can direct people contacting them appropriately.

After lunch Erica Brown (Vice-President of Acorns Hospices, Research Fellow at Centre for Children and Families Applied Research) was introduced to talk about How Brothers and Sisters cope with Loss. Erica gave an insight to parents about different ways siblings may display this grief, through anger or ambivalence, as well as ways in which they can share how they are feeling, through pictures/drawings or discussions while taking part in an activity that aids as a distraction. Children are very perceptive to their parent’s emotions and Erica suggested that it is helpful to share your grief and allow opportunities to discuss the loss, spend quality time together, answer any questions as openly and honestly as possible and maintain routines. After Erica had given her talk she gave an opportunity for questions and discussion which many took part in as this appeared to be a subject matter in which many related to.

The final part of the Day was spent in the main room with the children in the crèche for Coming Together time. Erica and the crèche workers had spent time in the morning with the children on remembrance activities. They made Bunting for the siblings no longer with us, this was hung in the room above a table set with candles and messages written by parents and grandparents to their Trisomy children. The children also decorated and planted flower pots with a special message in an envelope to their parents and these were then handed out by them. Faith Petrie lit the candles on the table and all the names of the Trisomy children were read out. Erica then read a story called Promises we make to our children followed by a poem and she invited all the children to blow bubbles over the candles and special messages. The candles were blown out as music was played in the background and Demi took the opportunity to thank everyone for coming and closed the Scottish Family Day 2012.

This was my third Scottish Family Day and it was a pleasure to offer my services as a volunteer (I was the annoying one trying to get your photos again!!!). Another great year the set up is so informal and relaxed I really hope everyone enjoyed their experience this year whether new or regular attendees, especially in our new venue. It is so valuable to be able to share your experiences in such a supportive group who understand what you have been or are going through, as well as meet supportive professionals face to face.

Huge thanks has to go to the speakers Una MacFadyen, Fiona Tait and Erica Brown; SOFT UK Trustees Demi Powell, Laura Petrie, Chris Rose; and Liz Egan (Scottish Representative), as well as the volunteers involved with SOFT in Scotland without them we would not have special days like these.

Hope to see you at the Scottish Family Day 2013 – Everyone welcome!

Emily van Tonder