Tell it Right, Start it Right campaign update 2016

Since the launch of our new Tell it Right campaign, we have been busy spreading the word about the importance of balanced up to date information about Down’s syndrome and the manner in which it is delivered to women and their families.

We have also been seeking support in Parliament and looking for ways to influence the provision and delivery of information.

February – Correspondence with the Department of Health

The DSA exchanged a number of letters between February and June 2016 with the Department of Health requesting a meeting to discuss the implementation of mandatory training, the regulation of private providers of NIPT and non compliance with NICE guidelines related to women undergoing testing, or with a diagnosis of Down’s syndrome. We were given the assurance:

“…that if NIPT is introduced into the screening pathway for Down’s syndrome, Edward’s syndrome and Patau’s syndrome it will be supported by a programme of information and training for health professionals to enable them to facilitate the offer of screening and to explain the test and the options following the test.”

However the Department considered current regulations regarding the delivery of NIPT in the private sector to be sufficient.

MayParliamentary briefing

In May we sent a briefing to all Members of Parliament and asked DSA members to make their MPs aware of the document. The briefing addressed a number of issues. These included the additional pressure NIPT is placing upon the need for healthcare professionals to be able to support women through the screening process and beyond and regulation of NIPT in the private sector. It also called for mandatory training to include all health professionals involved in the delivery of NIPT. You can read the briefing in full here.

June – Tell it Right, Start it Right training accreditation

In June we received our new accreditation from the Royal College of Midwives.

June – Nuffield Bioethics Committee

The DSA attended a consultation meeting with committee members where our Chief Executive, Carol Boys again stressed the need for balanced up to date and accurate information about Down’s syndrome and pre-natal testing, regulation and the mandatory training of all health professionals involved in this area.

JulyNuffield Bioethics Committee consultation response

The DSA submitted its response to the consultation paper about the ethical issues raised by recent and potential future scientific developments in NIPT which can be read here.

September – Meeting with Judith Cummins

The DSA met with the Labour MP for Bradford Judith Cummins to discuss the objectives of the Tell it Right, Start it Right Campaign and the implications of NIPT. Judith is keen to support our campaign. You can read the updated briefing we shared with her here.

December 2016Updated Parliamentary Briefing

In December 2016 we updated our Parliamentary briefing which you can download  here.

What’s next?

At the end of September we will be meeting with Public Health England (PHE) to discuss information and training.

We have also been asked to join a group being established at PHE regarding the NHS Fetal Anomaly Screening Pathway. The remit of the group will be to develop quality information for prospective parents about the offer of screening and the screening pathway. It will also look at the development of training resources for NHS staff delivering care along the screening pathway. Its first meeting will be on 29 November.

Tell it Right training

The DSA is continuing to raise funds to enable us to deliver training for midwives and health professionals. As a result of donations to the Tell it Right Campaign our bookings have tripled in the last six months. We have delivered ten events to hospitals or student midwives and new bookings are averaging at three a month.

In addition the DSA has established a Tell it Right study day that health practitioners can attend at the DSA offices at the Langdon Down Centre in London. This means midwives and other health practitioners working in maternity services can book on the training event directly, through the DSA website. The next event will be on the 7 November. Please promote this event with your local maternity services.

Thank you to everyone who has supported our campaign so far. We hope that working together we can make sure health professionals are provided with training which helps them to deliver with sensitivity, balanced up to date and accurate information about Down’s syndrome.