History of the trust

The Scottish Cot Death Trust was founded in 1985 after various research initiatives highlighted the extent of the problem of cot death in Scotland. Its aims have been reviewed and found to be as valid today as they were when the Trust was established. Some of our key dates and achievements are:

1985 – The Trust was formed, with initial funding from Sir Hugh Fraser through the Fraser Foundation.

1991 – The Trust funded an investigation of the handling of sudden infant deaths by Police, Procurators Fiscal and Pathologists. Results were presented at a meeting hosted by the Crown Agent.

1992 – The Trust co-ordinated the development of a standard autopsy protocol – one of the first in the world, and secured the right of bereaved parents to have access to a copy of the post mortem report.

1992 – The “Back to Sleep” campaign was launched to encourage parents to place infants on their backs for sleeping. This advice remains one of the key messages today in reducing the risks of cot death.

2001 – Case Review pilot study launched, co-ordinated by the Trust.

2002 – The first Support worker appointed to develop family support.

2007 – Case Review Pilot Study Report published.

2008 – 2010 – Work ongoing with the Scottish Government and NHS Quality Improvement Scotland on the implementation of national guidelines for dealing with cot deaths in Scotland.

2009 – The Trust is awarded a 5-year grant from the Big Lottery Fund and appoints a Community Services Nurse to deliver the Trust’s support services for bereaved families.

2010 – The Trust commemorates its 25th Anniversary. A suite of new support and education literature is developed. The next infant support programme is developed.

2011 – The Trust conducts its first large scale study of families to gather views about professionals’ responses when a baby dies from cot death

2012 – a formal Next Infant Support Programme is piloted in NHS Greater Glasgow and Clyde, later to be rolled out across the whole of Scotland. Rory’s Star, the Trust’s first bereaved sibling support resource is launched

2013 – The Trust works with NHS National Education Scotland to produce a professional e- learning module on sudden unexpected death in infancy.Support services expand to include 23 counsellors providing sessions for parents (individually and as a couple) and grandparents. Various therapies are available including CBT, person centred and trauma therapies. Sibling play therapies become available. The inaugural Scottish SUDI Summit is held in Edinburgh.

2014 – The Trust appoints a Scottish Coordinator to work in partnership with NHS Boards and other key agencies. The new role enables a national review system to continue, to educate key professionals about reduce the risk messages and to promote the next infant support programme with maternity professionals across the country, so that women who want this support are referred as early as possible.
Support services are restructured to provide community outreach bereavement support workers in the north, east and West of Scotland. Providing at home visiting and on-going contact with a dedicated professionals.

2015 – The Trust commemorates its 30th anniversary. Second sibling support book, Andrew’s Rainbow is launched for children born into a family after the death of a child.

2016 – The Trust secures a bid to host the International conference on Stillbirth, SIDS and Baby Survival in Glasgow in 2018.

2017 – The Trust secures funding from the Big Lottery to work with a theatre company on a project to engage with bereaved parents across Scotland and explore social isolation resulting from the death of a child.

2018 – The most successful ISPID ISA conference on Stillbirth, SIDS and Baby Survival is arranged and hosted by the Scottish Cot Death Trust. 550 delegates attend the three day event.