Education on Down Syndrome to support parents

The recently published NHS Long Term Plan (2019) speaks of a commitment to understanding the needs of those with learning disabilities,collaborative working to promote health and wellbeing and importantly that staff should have sufficient training to support those with a learning disability.

A key theme that came out of a @WeMidwives tweet chat in June last year was education of midwives and those involved in maternity services into the lived experience of people with Down Syndrome (DS), and of parents of children with DS.

@WeMidwives firmly believe that the informed choices of women and families should be facilitated, supported and respected in all aspects of childbearing, including in screening choices and decision making. The legal case of Montgomery v NHS Lanarkshire (2015) highlights the need for health care providers to anticipate what information a woman needs about her healthcare in order for her to make informed decisions.

In the interests of facilitating informed choice there it seems reasonable to expect health care providers to have an understanding of what it means to parent a child with DS and also the lived experience of a person with DS. This does not seem to be a universal level of knowledge for those who talk to women and families about screening choices.

This chat aims to create discussion around where we are now and what the barriers and enablers are to being able to fulfil the commitment in the NHS long term plan: to be able to understand the needs of those with DS and their families and to be able to offer the support that is needed to promote health and wellbeing.

References:

Montgomery v Lanarkshire Health Board. 2015. SC 11. 1 AC 1430

NHS ENGLAND, 2019. The NHS long term plan.London: NHS England

@Wemidwives chat on NIPT screening can be found here: http://www.wecommunities.org/tweet-chats/chat-details/5220


Questions:
1. Do you think that midwives are given enough information and training into the lived experience of DS and of parenting a child with DS?

2. Do you know of post-registration training or places to go for information about DS/supporting families? Have you used any of these?

3. What are the barriers to midwives feeling able to support families and how can we overcome these?

4. What would make you feel more confident about discussing the realities of parenting a child with DS with families?