October 2016 – Down’s Syndrome Testing and EDM 44

October 2016 – Down’s Syndrome Testing and EDM 44

Thank you for contacting me about non-invasive prenatal testing (NIPT) and EDM 44.

I understand you have very strong concerns about this sensitive matter.   By practice I do not sign EDMs but let me explain my position.  I recognise that with the correct help and support, most people with Down’s syndrome are able to lead healthy, active and more independent lives.

The NHS in England runs a screening programme which offers women more choice in pregnancy. Screening is an option, not an inevitable aspect of routine antenatal care and the programme carefully explains that women are entitled to choose not to have the test. Women are then able to make an informed choice based on personal values and beliefs whether to participate in the programme and the options available to them.  I must say that in principle, I am certainly in favour of offering individuals more options about their care and supporting women to make the best choices for them about their pregnancies.

The UK National Screening Committee advises Ministers and the NHS in all four countries about screening policy. In January 2016, the Committee recommended that screening for Down’s syndrome using NIPT be introduced into the screening programme. This followed a thorough review of the available scientific and cost evidence relating to NIPT and you can find a copy of the Committee’s review on the below webpage:
http://legacy.screening.nhs.uk/fetalanomalies

Ministers have welcomed this important recommendation which has the potential to transform antenatal care in the future. I know that the Government is carefully considering whether this could be introduced as part of the NHS screening process, based on the advice received.

A range of support is available for families with children born with Down’s syndrome. This includes an early intervention programme to help with the child’s development and provide support to the family. The programme is delivered by health visitors and midwives and can include speech and language therapy, physiotherapy, and individual home teaching programmes. In addition, where a child has a special educational need, the local authority should also make support available to ensure the child has access to the same educational opportunities as any other child.  This support is valuable and I assure you is certainly not under question, and regardless of any decision about screening, the Government will seek to continue to improve support for these families.

Thank you again for taking the time to get in touch.