Email and Telephone Support
SOFT UK has trained volunteers who provide support to families via email and telephone. All our volunteers have had direct family experience of Trisomy.
Some of the circumstances we can provide support in are:
- Through prenatal diagnosis
- During pregnancy
- When a pregnancy ends
- For families caring for a baby, child or adult with T13 or T18
- Through loss, bereavement and grief
- To families experiencing anxiety about future pregnancies
If you would like more information or would like to be put in touch with one of our volunteers, please use the CONTACT FORM, email firstname.lastname@example.org or ring the SOFT UK enquiry line on 07923 056 132.
When we receive your enquiry, we will pass it on to the person who is best placed to support you. This usually means the Volunteer closest to your own location, so that they have knowledge specific to your area. However if your enquiry is very specific we may pass it on to another person who has knowledge or experience of your situation.
We aim to contact you within 48 hours of your enquiry. However as we are all volunteers, there are occassions when this is not possible. If you have waited more than 3-4 days for a response, please contact us again in case we have not received your message.
Please look at the following pages for details of the volunteers in your area. It is often comforting to have some knowledge about the people who may be contacting you.
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.
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 email@example.com
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 firstname.lastname@example.org or contact her via telephone on 07957 620608
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
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