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Scotland Family Day 2018




 

 

On Saturday 29th September, Trustee and Scotland Coordinator Liz Egan welcomed our Scottish members to the Glynnhill Hotel in Renfrew. 

 

 

 

 

Our Family Days are an opportunity for families to create a support network with other families affected by Trisomy.  The Scottish group has always been very successful in encouraging families to remain part of the group, to offer support to others.  We were lucky to again welcome many members who have been with SOFT UK for decades.  We were also delighted to welcome back some families who have not been able to be with us in recent years.  Its always wonderful to have such a great group of friendly people to support others, it feels like a real family to all of us.  

 

 

Karen McIntosh from ARC (Antenatal Results and Choices) kicked off the Family Day with a brief update on ARC's work and the forthcoming NHS work on the proposed introduction of NIPT testing.  Both organisations have worked closely together on the introduction of this testing in England, including working on training NHS professionals. ARC and SOFT UK have always worked closely together, as many families benefit from both services.  Prior to her work with ARC, Karen has been involved with SOFT UK in Scotland for many years, in her previous role as a specialist midwife providing antenatal care to families affected by prenatal diagnosis. 

Unfortunately several members were unable to make the day this year due to ill health and other circumstances.  These families were greatly missed and we'd like to send a huge shout out to say hello and that we hope we can see you all again next year!  

 

 

 

 

 

 

As a result of this, SOFT UK member Marlene Graham was unexpectedly asked to do our 'Family' feature this year!  Marlene is a longstanding member of SOFT UK, following the loss of her son Logan to Trisomy 18.  However family life has been busy and its some years since Marlene was able to be with us.  She brought her lovely family with her this year, so it was wonderful to welcome them to the group.  Marlene shared Logan's story with us and update everyone on her growing family as Logan now has a little sister and brother.

 

 

 

 

 

Una McFadyen was again warmly welcomed to the event.  Una has been a SOFT UK professional adviser for many years.  She has recently retired from paediatrics, however does not seem to be any less busy; working with the NHS on the development of new pathways.  Una updated everyone on the proposals for streamlining critical care and asked families' opinions on how these plans affect family life.  Families were very vocal in sharing their considerations on travelling for intensive care facilities, including how this affects family life, the needs of siblings, the trouble accessing a support network and the costs incurred.  Transitions between specialist and intensive facilities were also a significant concern. Una very much values this opportunity to speak directly with families who have significant experience of receiving intensive care.

Una also talked about how to best provide support to young carers or young people suffering a bereavement.  Members talked about their experiences of trying to access young carer support; age restrictions, postcode variability, difficulty in finding out about resources, etc. Schools were felt to be an important environment for children and an appropriate place to identify them as requiring support and providing that support.  However this clearly has a significant resource implication and would require additional funding as schools are already struggling with the impact of cuts to support services. 

SOFT UK sibling members Matthew and Mia presented Una with a lovely retirement gift to mark her special celebration. 

In the creche the children were busy creating a beautiful SOFT UK tree, with all their lovely handprints.  There was also a good bit of singing and dancing and various hijinks!  Blair seems to have been appointed as photography assistant for the day and has taken some fabulous shots!

 

 

 

 

Lunchtime is always a great time to catch up, particularly with the children in the creche.  Its amazing how much everyone grows between Family Days. The youngsters are also getting wise to the cake queue and I'm sure got the majority of the chocolate tart this year! 

 

 

 

 

  

 

In the afternoon SOFT UK Chair Jan Fowler updated everyone on the work the Trustees and Volunteers  have been doing throughout the year.  2018 has been an incredibly busy year for SOFT, with the introduction of NIPT testing in both England and Wales.  Trustees have been out training professionals throughout England and Wales, raising awareness of SOFT UK and working directly with professionals in antenatal services to update their knowledge and consider their practise from the family perspective.  Jan showed a poignant video made by Gareth Glendinning and Alison Pearson about their experiences with their children Phoebe and Isabel.  The focus of the training programme is to use the 'Lived Experience' of families to train professionals and the feedback on this approach from the NHS has been excellent. We hope to use the same approach when Scotland launches NIPT. 

 

 

 

 

Project Manager Demi Powell talked about the development of the SOFT UK website and how we hope this will better support families.  The website will have a large section devoted to Family Stories and all families were invited to contribute to this in some way, so that sharing their stories provides support for new families who may be going through diagnosis. Demi also talked about volunteering opportunities within SOFT UK, for those who have time to provide a little more help to the organisation. 

 

 

Our Family Day usually concludes with a group trip to the leisure club - admittedly usually clearing the place!  Ayla amazed us all this year with the improvement in her swimming.  And she even managed to convince Marlowe to kick her legs in the water - something Marlowe's swimming teacher hasnt been able to persuade her to do in 18 months! We had a lovely Family Dinner in the evening and all had a chance to catch up and share our news.  

We would all like to say a huge thankyou to Liz Egan for organising everything as always!  It was a really wonderful day and always passes too quickly.  

 

 

 

We would like to say a huge thankyou to Nick Withers, who once again joined us to document our day.  Nick is a fantastic photographer who gives up her time to help SOFT UK create wonderful memories of our events and also offers free portraiture opportunities for our families.  Nick recognises the challenges of getting family photographs when you have children with complex needs and her unending patience with the children is much appreciated.  We have shown a few tasters of her photos here, a full feature will be published in our Winter Newsletter. 

 

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