How can we support you?

A diagnosis of Trisomy 13 or Trisomy 18 can feel isolating. Our primary mission at SOFT UK is to ensure families can access support when they need it. 

The SOFT UK support line provides a safe, confidential place for anyone whose pregnancy or child is affected by Edwards’ syndrome (also called Trisomy 18) or Patau’s syndrome (also called Trisomy 13). Whether your experience is recent or happened long ago, we aim to support you for as long as you need us. 

0300 102 7638

The support line is free or low cost to call (depending on your telephone provider).

The support team can also be contacted on:

support@soft.org.uk

Who do we support?

• Parents who have a prenatal higher chance result or diagnosis of Edwards’ syndrome or Patau’s syndrome.
• Parents who are caring for a child with Edwards’ syndrome or Patau’s syndrome.
• Bereaved parents.
• Parents who have / are planning to end a pregnancy.
• Other family members.
• Friends and colleagues.
• Healthcare professionals.
• Other professionals supporting families.

Who will be responding to your call or email?

We have a small team of dedicated and trained Peer Support Volunteers to offer confidential, non-judgemental and compassionate support. They are all parents themselves who have had a similar experience to you.
 

What to expect when you contact the helpline

The SOFT UK Support Line offers support across the UK (England, Wales, Scotland and Northern Ireland) in the following ways:

• Information about Edwards’ and Patau’s syndrome.                 
• Caring for an older child affected by Edwards’ or Patau’s syndrome.                  
• Bereavement support (coping with grief, anger, hopelessness, guilt, anxiety, facing the future).
• Practical information relating to decisions required during and after pregnancy. Our information is based on the ‘lived experience’ of other parents.
• Signposting to other services and sources of support that may be helpful.
• Coping with another pregnancy after the death of a baby.
• SOFT UK does not offer medical advice.

Opening times and confidentiality

The team are available to speak on the telephone or respond to emails from Monday to Friday (not bank holidays). Your call will initially be responded to by an answerphone where callers can describe the support they need and leave their contact details. We aim to return your call within 24 hours during opening hours. Or you can email us at support@soft.org.uk if you prefer. We aim to respond to emails within 24 hours during opening hours. 

Calls and emails are confidential. We will not share information outside of SOFT UK, except if there is an immediate risk of harm to you or someone else.

SOFT UK Publications

SOFT UK produces a range of publications for families affected by trisomy 13 (Patau's syndrome), trisomy 18 (Edwards' syndrome) and related conditions.

• Your Unborn Baby was written to support families through a prenatal diagnosis.  
• Your Baby gives information to families with a baby.
• Trisomy 13/18 for Siblings gives information to children in an age-appropriate way and can be used as the basis for family conversations.
• SOFT UK newsletters contain a range of information and many family accounts of their Trisomy experiences.

If you would like a printed booklet, or any further information, please email contact@soft.org.uk.

Alternatively all booklets are available here.