Down’s Syndrome Scotland: the need for understanding

Scotland’s leading Down’s syndrome charity wants families to understand the joys as well as the challenges of living with Down’s syndrome

Wednesday 8th May 2019

Last week we heard from MSP Jeremy Balfour on his call for increased testing of unborn children to be accompanied by work to increase understanding of the options for mothers. 

Now, as the introduction of a test that can detect Down’s syndrome in expectant mothers in Scotland draws closer, leading charity Down’s Syndrome Scotland is telling that understanding – and education – is key.

In countries that have introduced non-invasive pre-natal testing (NIPT), the number of babies born with Down’s syndrome has plummeted as parents opt for abortion.

The organisation says is not opposed to the tests but is calling for expectant parents to be given all the information about having a child with the condition – the positives, not just negatives.

It’s now involved in developing educational resources to help midwives, nurses and doctors discuss the issue with families – so parents get the right support from diagnosis to birth.

They’re telling

“Down’s Syndrome Scotland continues to believe that people with Down’s syndrome can and do lead full and rewarding lives and we acknowledge that the offer of pre-natal screening and testing for Down’s syndrome is a routine part of antenatal care offered in Scotland. It is important to recognise that NIPT is a screening test, NOT a diagnostic test.

“An invasive diagnostic test (amniocentesis or CVS) is still required to confirm a definitive diagnosis of Down’s syndrome. Although NIPT is not currently available in the NHS in Scotland it has been available privately for some time and we respect parents’ rights to making choices about antenatal tests and their outcomes.

“However, at the time of screening and testing, easily understood and up-to-date information should always be provided in a balanced way by well trained professionals.  This should include information about the accuracy of screening/test results and associated implications of further screening/tests, the life prospects of people with Down’s syndrome and the challenges and joys of having a child with Down’s syndrome in the family.

“Also included should be guidance on support available both from Down’s Syndrome Scotland and in the community as well as the offer of informed, broad and non-directive counselling from a suitable specialist.”

Plans for the new tests are being drawn up by the NHS in Scotland, which is consulting experts including Down’s Syndrome Scotland on educational resources for the healthcare professionals that will deliver the tests – giving the charity “a say in the messaging being delivered.”

Down’s Syndrome Scotland explains:

We are currently included in the NHS education and NHS health Scotland education and communications working group for the development of educational resources for professionals in relation to introducing NIPT as an addition step in the existing screening pathway in Scotland. 

We have an advisory role on the steering groups for standards and policies that surround pregnancy and new born screening programmes in Scotland and we worked closely with NHS, NHS education and Health Improvement Scotland on the pregnancy screening booklets and information that is provided to parents in relation to Down’s syndrome, which include the ‘You’re Pregnant!’ booklet and ‘Ready Steady Baby’.

“We have worked hard over the last few years to develop positive relationships with midwifery and maternity services within Scotland and now deliver permanent teaching sessions to student midwives each year to help increase their knowledge and awareness of Down’s syndrome and help shape midwives of the future to provide the right support to parents through screening and diagnosis of Down’s syndrome.

“This has been a great step forward and really helped us make a positive impact on the maternity services in Scotland.

“We are working with NHS education to develop a film for them to use an educational resource for professionals to provide positive stories through the use of images and videos from parents about having a child with Down’s syndrome.

“NHS education really want people to understand the joys and challenges of having children and young people and adults with Down’s syndrome. This film will demonstrate this very well and that people with Down’s syndrome can have very full and successful lives.”