Supporting women with learning disabilities through pregnancy
Finding out if easy guides to screening meet the needs of women with learning disabilities.
Do you work with women with learning disabilities? Can you help us with our online survey?
Publishing easy guides is one way PHE aims to reduce inequalities, by allowing everybody to get the information they need to make informed decisions about screening. An easy guide is a booklet with more pictures, bigger text and simpler language. With support from PHE Screening, NHS England is beginning an evaluation of how information on antenatal and newborn screening is provided to women with learning disabilities in London, including the use of the ‘Screening tests for you and your baby’ easy guides.
People with a learning or physical disability are among those who access screening less in England.
A review of evidence on antenatal care for women with learning disabilities has found that many struggle to understand the antenatal information communicated during pregnancy.
This information is often mostly text based.
In February 2017, PHE launched the 8 new easy guides that explain the screening tests offered during and after pregnancy. These resources are aimed at people with learning disabilities and are adapted from the standard ‘Screening tests for you and your baby’ booklet.
These easy guides are available for local screening services to download and print off from GOV.UK. But little is known about how they have been used by professionals and women with learning disabilities since their introduction.
Aims of our evaluation
Our evaluation aims to find out more about:
* the process of identifying women with learning disabilities in London’s maternity and antenatal and newborn screening services, so that appropriate information can be given
* awareness of the easy guides, how they are used in London and what professionals and women themselves think of them
* other materials and resources used to provide information on antenatal and newborn screening and what can be learned from them
* any potential need for further materials and support to help provide adequate information to pregnant women with learning disabilities
We also hope the evaluation will enable us to share good practice that will benefit women with learning disabilities across the country.
We will use a number of methods to gather information and evaluate the guides. They will include interviews with people who provide antenatal and newborn screening, professionals working in maternity and learning disabilities services in London, the voluntary sector and support and advocacy groups. We will also consult women with learning disabilities in London, their families, carers and supporters.
In addition, we would like to:
* survey a wider group of professionals to see if the views of those we interview are held more widely
* gather opinions from outside London
How you can help
We would like feedback on the ‘Screening tests for you and your baby: easy guides’ from anyone involved in the antenatal and newborn screening pathway.
The survey closes on 1st March 2018.
If you are in London, have experience of providing information to women with learning disabilities and are willing to be interviewed please contact Sarah Morgan.
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Sarah Morgan is a Public Health Registrar and joined the London Public Health training scheme in 2014. She is currently on placement with the NHS London screening and immunisation team, previously having worked in Local Authority Public Health with the South London Health protection team. Sarah was a junior doctor in the West Midlands and spent a number of years working for international non-governmental organisations in the fields of child health, malnutrition and TB working for Medair, Save the Children and World Vision UK and was Chair of the board of Target TB until 2016. Sarah is also on the executive committee of the faculty of conflict and catastrophe medicine and a guest lecturer in Global Health for MSc students at the University of Brighton.