Perceptions of Down Syndrome in antenatal care (FOI)

​​​​Request 706070381

I am conducting research into perceptions of Down Syndrome in antenatal care and would like to request copies of communication materials sent to expectant women within your Trust. 

Specifically, I would appreciate copies of the following: 

• Letters sent to expectant women advising of screening test results following combined or quadruple screening for Down Syndrome. If the content differs based on the likelihood of a high or low chance result, please provide examples of both. 

• Letters or result notifications from Non-Invasive Prenatal Testing (NIPT), including examples for both high and low chance results if they differ. 

• Any information shared with expectant women regarding these tests (combined/quadruple screening and NIPT), including letters, leaflets, or signposting materials. 

• Any materials provided to expectant women about Down Syndrome itself, including guidance on pregnancy and care following an antenatal diagnosis. 

Response

Examples of letters which may be sent to expectant women in respect of antenatal testing results are attached below. Health and Care Jersey (HCJ) letters for first and second trimester screening results are generated within the Electronic Patient Records system. Sample documents have been prepared in consideration of legislation, and personal information has been redacted in line with Article 25 of the Freedom of Information (Jersey) Law 2011 to protect the privacy of individuals.

Screening results letter - First trimester Redacted – attached. 

Screening esults letter - First trimester_Redacted.pdf

Screening results letter - Second trimester Redacted – attached. 

Screening results letter - Second trimester_Redacted.pdf

NIPT result - Low risk Redacted – attached. 

NIPT result - Low risk_Redacted.pdf

NIPT result - High risk Redacted – attached. 

NIPT result - High risk_Redacted.pdf​

Where test results indicate a pregnancy as high risk for a screened condition, HCJ call the expectant woman, and following verification of identity, invite the individual in to discuss the results in person and provide one-to-one counselling, support and signposting. Affected individuals have open access to HCJ, and can revert with any further questions. Counselling is with skilled Foetal medicine midwives, sometimes in collaboration with the Obstetric consultants. These midwives have completed additional training on counselling for choices after a higher-chance screening result, have attended the Down’s Syndrome Jersey Group study day, and provide balanced, supportive information. Information incorporated in these study days is available at Tell it Right in Jersey - Downs Syndrome Association.

Occasionally results will be provided via telephone, but if specifically requested by the individual, and this would always be followed up with a same day (if required) appointment to come and ask any questions they may have, and signposting.

The following organisations / guidance is signposted:

ARC contact information and website details are provided. A copy of the sticker which is attached to the person’s antenatal notes is linked below:

ARC Contact Information (scan) – attached. 

ARC Contact Information (scanned).pdf

• A printed version of the newest NHS England guidance is supplied to all women with a higher-chance result, as below:

NHS Guidance (scan) – attached. 

NHS Guidance (scan).PDF

• The Down’s Syndrome ‘This is Me’ booklet is also freely available HCJ’s Antenatal Clinic waiting room, accessible for all attending clinic appointments a scanned version is provided below:

This is Me (Booklet scan) – attached. 

This is Me (Booklet scan).PDF​

Information on antenatal screening and scans is available on the Government of Jersey’s website, at Pregnancy and birth, and a patient information leaflet on ultrasound scans in pregnancy is provided below:

Ultrasound Scans in Pregnancy Leaflet – attached. 

Ultrasound Scans in Pregnancy Leaflet.pdf​

Article applied

Article 25 - Personal information

(1) Information is absolutely exempt information if it constitutes personal data of which the applicant is the data subject as defined in the Data Protection (Jersey) Law 2018.

(2) Information is absolutely exempt information if –

(a) it constitutes personal data of which the applicant is not the data subject as defined in the Data Protection (Jersey) Law 2018; and

(b) its supply to a member of the public would contravene any of the data protection principles, as defined in that Law.​