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Project information

Tell it Right, Start it Right

The manner in which parents are told their child has or may have Down’s syndrome varies dramatically. We are acutely aware that there is a gap in knowledge and that some essential communication skills need to be addressed during and after pregnancy.

July 2010 - July 2014

Charity information: Down's Syndrome Association

Down's Syndrome Association logo
  • Need


    The manner in which parents are told their child has or may have Down’s syndrome. We compiled some very interesting data from our “Tell it Right” survey:
    • 63% of the respondents said that during their pregnancy did not receive any information on DS and only 20% recalled receiving a leaflet which included information on DS. Of those people, many found the information difficult to understand, and was old and outdated.


    The DSA has developed a comprehensive training programme aimed at midwives and their colleagues that has been accredited by the Royal College of Midwives. Co facilitated by parents and adults with
    DS, it will provide professionals with advice and guidance on how to get it right during screening and at birth. With 25,000 midwives working in the NHS and a great number of interested medical professionals we plan to host 50 training sessions over the next 2 to 3 years throughout the UK.

  • Aims

    Aim 1

    To offer balanced and accurate knowledge about Down’s syndrome through training


    » Offer up to date and accurate information about Down’s syndrome

    What success will look like

    The extent attendees will understand what information and support expectant parents need throughout the screening process.

    Aim 2

    Attendees to gain knowledge about common issues affecting babies with DS in the early weeks of life


    » Understand the difficulties associated with feeding and have practical strategies for supporting new parents

    What success will look like

    Attendees will understand the difficulties associated with feeding and have practical strategies for supporting new parents

    Aim 3

    To give up to date and accurate knowledge about living with Down’s syndrome


    » Educate about recognising the range of emotions affecting parents in the early days

    What success will look like

    Attendees will recognise the range of emotions affecting parents in the early days

  • Impact


    Long term, babies being born with DS will have a better foundation for life. We anticipate at least 50 medical professionals attending each workshop meaning that in each year we will train 2500 medical professionals over 50 sessions. This training will provide midwives and other relevant professionals with the necessary skills and information to support pregnant women in making important decisions throughout screening for DS, including whether or not to continue with their pregnancy.


    Lack of funding is always the main risk! We have dealt with this by appealing to our membership and a variety of funders. No other relevant risks to this project. Only positive outcomes.


    We will update donors a minimum of once per annum on the number of training sessions delivered, feedback from attendees, and relevant case studies.

  • Budget

    Budget - Project Cost: £100,000

    Loading graph....
      Amount Heading Description
      £25,000 Staff Costs Trainer salaries - inc N.I. and pension
      £10,000 Travel and Accom Travel and Accomodation costs
      £27,500 Co-Trainer This a person with DS and their carer. Expenses include fee, travel and accom.
      £30,000 Catering .....catering for 50 training sessions @ £600 per session.
      £7,500 Information delegate packs Includes promotions, postage and packaging.

    Current Funding / Pledges

    Source Amount
    DSA Membership £15,000 Guaranteed
    Corporate and trust donations £27,000 Guaranteed
  • Background


    Tell it Right Start it Right will be delivered throughout the UK. The locations are dependent on need.


    Fundamentally children with Down's syndrome and their parents. Midwives and interested professionals will also be major beneficiaries by way of being educated to then tell parents that their child has DS in the correct manner.

  • Why Us?

    Why Us?

    The DSA identified the need for this programme as a result of concerns raised by new parents of babies with DS and a subsequent survey. This survey was conducted by the DSA in 2009 to determine what information new parents of babies with DS received at various stages during pregnancy and at birth. The survey found 63% of these parents did not recall receiving information about DS prior to screening. We have the resources, staff and knowledge to deliver this training to a high level.

    Read more about the Charity running this project.


    Staff Trainers

    Their role is to deliver training on relevant DS topics. In this case - Midwives, Health Visitors, Fetal Sonographers and other health professionals