We have been invited by Healthcare Improvement Scotland (HIS) to take part in the development group that is reviewing the clinical standards for pregnancy and newborn screening. Work on this is ongoing and we will keep you informed of progress in due course.
- We provided feedback to NHS Health Scotland as they worked on the new pregnancy screening leaflet ‘You’re pregnant!’.
- NHS Health Scotland is also in the process of redesigning its publications Ready Steady Baby! and Ready Steady Toddler! The aim is to improve health information for parents and carers and we will stay involved in this project over the coming months.
- We met with Lesley Regan from the Royal College of Obstetricians and Gynaecologists and Down’s Syndrome Association and are now working together to help raise awareness of Down’s syndrome in the field of foetal medicine. The three organisations are developing a proposal for a new eLearning resource with the aim of helping professionals working with pregnant women to provide balanced and accurate information about the condition.
- The UK Department of Health (DoH) approved the UKNSC recommendation on NIPT. The test will be rolled-out gradually over an initial 3-year period alongside a programme of staff training. The DoH expects the test to first be offered across NHS maternity services in England in 2018/19. For more information visit the DoH website.
- In Scotland, the Scottish Government confirmed that no changes will be made to the Fetal Anomaly Screening Programme at present since health is a devolved issue. The Scottish Screening Committee will carefully consider the UK National Screening Committee’s advice on the use of Non-Invasive Prenatal Testing (NIPT) as an additional screening test for Down’s syndrome next year.
- Professor Lesley Regan from the Royal College of Obstetricians and Gynaecologists (RCOG) has welcomed the opportunity to meet with the Down’s Syndrome Association and Down’s Syndrome Scotland to discuss how the three organisations could work together to ensure women considering and undergoing NIPT receive high-quality information and support.
- Letter from Carol Boys and Pandora Summerfield, Chief Executives of the Down’s Syndrome Association and Down’s Syndrome Scotland to the Royal College of Obstetricians and Gynaecologists. You can read this letter here.
- Briefing on NIPT sent to all MSPs, Scottish Government, Chief Medical Officer and Chief Nursing Officer. You can read this briefing here.
- Future of Down’s campaign on screening: As health is a devolved issue we asked them to direct families in Scotland to their MSP rather than MP and we also asked for our briefing to be put on their website in support of their actions.
- ‘A World Without Down’s Syndrome’ documentary by Sally Philips :
- In advance of the programme being aired we shared this via social media to alert families to it.
- We had 6 families pre-arranged and lined up who were willing to speak to the press and journalists as we expected further coverage. The Sun followed up with 3 but chose not to use their stories in the piece they ran.
- We monitored all our social media live on the night of the show and actively encouraged discussion/comment and also offered a full day of live chat the following day on social media.
- We offered input and to speak on a BBC Radio show discussing the ethics of screening and the costs of support. On this occasion the BBC wanted families’ opinions and thoughts.
- Updated statement on screening on our website (as are the older versions and release dates). You can read these statement here.
- We participated in a BBC Scotland radio show with an adult and her Dad raising awareness around increasing life expectancy and what life is like today for people with Ds, this was shared via social media.
- Our Chief Executive was invited to attend that Nuffield Council on Bioethics NIPT consultation meeting with families of and charities for people with genetic conditions, Sally Phillips was also at the meeting. Their report and recommendations are due to be published in February 2017.
- The UK National Screening Committee’s (UK NSC) recommendation: that the new blood test known as Non-Invasive Prenatal Testing – or NIPT- should be offered as part of the screening process for women who choose to go through that process and only for those amongst them who are found to have a 1 in 150 chance or greater of having a baby with Down’s syndrome, as part of an evaluation process.
- Our Chief Executive and our Family Support Service Manager met with the Chief Nursing officer for Scotland regarding: screening and diagnosis information and support and our concerns over current practice; the likely implementation of NIPT, families concerns and our call for more accurate and unbiased information, Ds awareness and staff training in giving this information. Issues that people with Ds and their families face when they come into contact with health professionals and the importance of health checks were also discussed.
- Following this meeting we spoke at an NHS Education for Scotland event for student nurses raising awareness, tackling attitudes and discussing what support families want.