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Edwards' Syndrome Debate in the Scottish Parliament

Edwards' Syndrome Debate in the Scottish Parliament

On 13th December 2012, there was a debate on Edwards’ Syndrome in the Scottish Parliament. This debate took place because of a little girl called Caoimhe and her parents’ efforts to set up a trust in her name to promote awareness of Edwards’ Syndrome. The key points of the motion, raised by Richard Baker MSP, were to ask for recognition of the support needs of families who have children with Edwards’ Syndrome.

Demi Powell and Laura Petrie, SOFT Trustees, attended Parliament on the day to hear Elaine Murray MSP speak on our behalf. Elaine put forward SOFT UK’s statement providing up-to-date statistics on Edwards’ Syndrome and outlining the variety of circumstances and support needs that families have. SOFT UK were also recognised for their long-term support of parents by a number of other MSP’s during the debate, which was truly heartwarming to hear such recognition.

The Minister for Public Health, Michael Matheson, responded to the concerns raised. He referred to the work being done by FASP in England, with which SOFT UK is highly involved, which aims to improve and standardise prenatal screening for T18 (and T13). He also referred to core funding given to SANDS to support families experiencing pregnancy or infant loss. He then went on to discuss the various palliative care initiatives discussed above and the “Shaping Bereavement Care” NHS programme that was rolled out in 2011.

  It was a very interesting debate and wonderful to see Edwards’ Syndrome discussed at the highest levels. It does seem promising that there are so many health initiatives relevant to the care of our families, however the proof will be in the implementation. The full transcript of the debate can be found here.  

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