Health Issues
Please see the folders below for a variety of information on health issues for children with T13, T18 and related disorders.
If you have information you would like to share with other parents, please send it to us at website@soft.org.uk
Growth of Infants with T13/T18
Growth charts for infants with T13/T18.
Health Issues - Scotland
If you are caring for a child with Exceptional Health Needs in Scotland, please check out this article for useful resources.
Moving and Handling of Young People
A useful resource considering the Moving and Handling needs of young people.
Tube Feeding
Information for children considering or using tube feeding.
Communicating with Children with Exceptional Needs
Resource for professionals and families about communicating with children who have barriers to effective communication.
Sex Education
Relationships, sexual health and sexuality guidance for families and professionals....
Nominate them before 3rd May for the 'Who cares award' for the chance to win them a break.
InsuranceWith, supported by Genetic Alliance UK, have launched the Who Cares Award to give carers the opportunity to be recognised for all of their hard work. The awards will be based on nominations from the public or through dedicated charities of those people who support others, dedicate their lives or put their lives on hold to care for others. Candidates can be young or old, a professional nurse or a relative. You can nominate someone you know here.
SOFT UK Northern Ireland Family Day 2013
The Northern Ireland Family Day will take place on Saturday 10th August at the Charelmount Arms Hotel in Armagh.
Join other SOFT UK families to chat, share experiences and bring the children along for the fun activities! There will also be some remembrance time for those families who wish to remember a loved one.
As always everyone is very welcome!
Refreshments will be provided.
For more information and booking, please contact enquiries@soft.org.uk
Siblings Research Project
Joanne Fullerton, a Trainee Clinical Psychologist with Bangor University is completing a study investigating the experiences of siblings of children with life limiting conditions. She is looking for volunteers to take part. The aim of the study is to better understand the experiences of this group of siblings. If you are the parent of a sibling aged between 3 and 16 years, and you and your sibling child wish to take part, simply email her on j.fullerton@bangor.ac.uk or contact her via telephone on 07957 620608
SOFT US Website Launch
Our colleagues at SOFT USA have just launched their new website. It has a fantastic new look at contains lots of resources for families and also professionals. There is a comprehensive research section, providing all the details of the latest research on Trisomies and related issues. There are some beautiful family stories and videos and links to all their support materials. The site also has a foreign language translation function for those who first language is not english.
SOFT US have worked in partnership with us for many years and have kindly given us permission to feature their content on our own site, making sure that all families have access to the information that they need.
So head on over and have a look at www.trisomy.org
CEN report on Emotional Impact of Tube Feeding in Scotland
The CEN have published their results on their work improving support for families in Scotland of children who are tube fed. The full report is available here. http://www.cen.scot.nhs.uk/files/Emotional_Impact_Evaluation_Jan13.pdf
