Tell it Right, Start it Right

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 Of those people, many found the information difficult to understand, and was old and outdated.

Solution

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.

Aim 1

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

Activities

» 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.

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Aim 2

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

Activities

» 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

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Aim 3

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

Activities

» 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

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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.

Risk

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.

Reporting

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 - Project Cost: £100,000

	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

Location

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

Beneficiaries

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.