Guidance

ANNB screening: reducing inequalities

Published 25 August 2021

Applies to England

Providers must make sure the eligible population for the 6 antenatal and newborn (ANNB) screening programmes is offered screening and, where the offer is accepted, screening is completed

Screening safety incidents can occur when screening is missed, delayed or incomplete. Inequalities can be a contributory factor, for example if a woman’s communication needs are not met during care.

Providers should be aware of these inequalities and make coordinated efforts to reduce barriers to attendance.

Access to care

Early and equitable access to screening is important to allow women time to receive accessible, accurate and evidence-based screening information and to make their own personal informed choices about their screening options.

To help improve access, providers should:

• make information about access to maternity services widely available, for example at GP practices, pharmacies, community spaces and on hospital websites
• provide online or direct self-referral and access to maternity services
• minimise avoidable delays for women booking for antenatal care (the National Institute for Health and Care Excellence (NICE) advises that women should ideally book before 10 weeks gestation) (1)
• make sure relevant education and training is provided for healthcare professionals involved in the screening pathways
• offer flexible appointments if possible, for example appointments outside normal working hours
• make appointments in consultation with women, parents and/or carers to make sure their access needs are met
• where possible, try to provide newborn hearing screening and newborn physical examination screening before babies are discharged from hospital
• make sure pathways are in place to support the timely offer of appointments and referral alongside, if required, access to specialist services such as a haemoglobinopathy specialist nurse counsellor
• where possible, offer screening at a more convenient location if requested

Communication

Effective communication, listening to and considering the needs of the individual(s), is essential to enable people to make a personal informed choice about screening. Access and communication issues should be considered at every stage of the screening pathway.

Text message reminders for NHS screening appointments are effective in increasing informed participation in under-served groups. ANNB screening providers can refer to national guidance on effective text message use.

Resources are available to support providers moving from printed to digital information.

Providers should:

• consider the communication needs of all individuals, including access to interpreting services and provision of screening information in alternative formats, such as easy read guides, if required
• print out any digital HTML leaflets (or sections of leaflets) locally, if required for people who cannot access digital information
• where possible, record communication or accessibility needs on local maternity and/or national newborn IT systems
• make sure every pregnant woman receives the Screening tests for you and your baby information in a format accessible to them at first contact
• allow time for discussion of all screening options
• give staff access to local cultural awareness training if available, or the e-Learning for Healthcare Cultural Competence programme developed in partnership with the Royal College of Midwives
• if possible, enable their maternity IT systems to record protected characteristics to allow an individual’s needs or wishes to be addressed appropriately
• refer to national guidance to ensure women who cannot access information online are not disadvantaged

Personal informed choice

It is especially important to support pregnant women to make a personal informed choice about some screening tests in pregnancy that can lead to decisions and options about whether or not to continue a pregnancy (2).

Women from ethnic minority and social disadvantaged groups may be less likely to take up the offer of screening and less likely to make an informed choice about screening (3); (4).

Screening services need to make sure they can facilitate personal informed choice for all women and parents or carers. Providing screening information in a format appropriate to the individual can help to facilitate personal informed choice. Health professionals should use sensitive, balanced, evidence-based language and terminology that reflects the communication needs of individuals.

Improving access for underserved groups

Many of the conditions we screen for are more common in underserved groups than the rest of the population.

To help improve access to screening for underserved groups, providers, commissioners and other partners should follow national guidance, including:

• Population screening: reducing inequalities for people with learning disabilities
• Population screening: access for people with severe mental illness
• NHS population screening: information for transgender people
• Population screening: reducing inequalities in secure settings
• NHS population screening: support for carers, which includes guidance on assessing capacity, the principles of the Mental Capacity Act and making a best interests decision

Services should consider the needs of individual women who may be disadvantaged by any move towards providing virtual antenatal appointments by default.

All organisations that provide NHS care are legally required to follow the Accessible Information Standard.

Having checks in place along the antenatal and newborn screening pathways will help to make sure no women or babies are missed from completing the pathway, particularly those from vulnerable groups, including, for instance:

• asylum seekers and refugees – personal informed choice, attendance and follow-up may be limited if the family moves or has limited understanding of English
• non-English speakers – patient information needs to be accessible to meet the needs of the parent(s) to support personal informed choice
• ‘looked after children’ and babies with safeguarding issues
• ‘movers in’ (women and babies up to one year who move into the area) – mechanisms should be in place to identify eligible babies and offer timely screening

Supporting pregnant women with learning disabilities

Women with learning disabilities experience poorer maternal wellbeing and pregnancy outcomes compared to the general population. Pregnant women with learning disabilities are also less likely to seek or attend regular antenatal care (5).

Maternity services have a legal duty to make reasonable adjustments for people with learning disabilities, including adapting to individual communication and learning needs, and taking the time to check that they have been fully understood (6).

Women with learning disabilities may find making a choice about screening challenging. This could be because of:

• practical barriers, including mobility issues and difficulty using appointment systems
• a lack of family or carers to support attendance at appointments
• a lack of knowledge about screening
• communication barriers
• a lack of knowledge among health professionals of the needs of people with learning disabilities
• a lack of awareness among health professionals about resources to support people with learning disabilities

To help explain ANNB screening to people with learning disabilities, providers can download and print off copies of Screening tests for you and your baby: easy guides.

If possible, these resources should be printed single sided and in colour.

Before screening appointments, providers can:

• find out if the hospital has a learning disability liaison nurse, or other health professional involved in the woman’s care, who can offer support during the screening appointment
• consider how the individual likes information to be presented and tailor it accordingly – for example, by using pictures, simple words, symbols, signing or film to explain screening
• be aware of any jargon or medical terminology they may be using and try to explain things in a simpler way
• find out if the woman has an up-to-date communication or hospital passport which can help to make them feel comfortable
• discuss any adjustments or communication needs the woman might need with them ahead of any appointments
• think about the logistics for the appointment, such as checking how they are going to get there
• appropriately share information and ensure a coordinated support package is in place so relevant health professionals can work together – effective handovers can improve accessibility and understanding
• consider showing the woman what will happen during the appointment by showing her the rooms and explaining what the equipment does, including any noises it makes – using photos if a visit is not possible
• give the woman the chance to meet members of the healthcare team most likely to provide care
• let the woman know she can have somebody present during appointments and help arrange this if necessary – engage with the woman’s family or friends, if the woman agrees
• check if the appointment will take place in a quiet environment and consider a home appointment if necessary

During screening appointments, health professionals can:

• use simple language, avoiding long words and long sentences
• speak slowly and clearly, and stop to check understanding at regular points
• show the woman the relevant Screening tests for you and your baby easy guide or video and discuss it with her
• always talk directly to the woman, not her carer or supporting professional
• follow the woman’s lead and go at her pace
• be aware that women with learning disabilities are more likely to have hearing loss, so do check they can hear you

These are suggestions and will not be appropriate in all cases. Find out how best to support each individual.

Use of failsafe processes

Effective failsafe processes should be used across the whole screening pathway from the offer of screening and receiving results into referral and treatment. When the offer is accepted, the screening pathway should be completed in a safe and timely way and the women, parents and carers should receive the results.

Failsafe processes are especially important to make sure that women and babies who may be more likely to experience inequalities, such as those from vulnerable groups or with specific communication needs, receive equitable care.

Antenatal screening programmes

Providers of infectious diseases in pregnancy screening (IDPS) should make sure that:

• pregnant women who initially decline the IDPS offer receive a formal reoffer from a member of the screening team, ensuring the full benefits of screening have been understood by the woman
• blood samples are taken on the same day the woman accepts screening and are not delayed to coincide with future appointments
• midwives inform the screening team immediately of women who disclose that they are living with HIV or hepatitis B so that they can be promptly referred to specialist services
• women are told that they can ask to be re-tested at any point in their pregnancy if they feel they have been put at risk

Sickle cell and thalassaemia (SCT) screening providers should:

• have a fast track pathway for known at-risk women and biological fathers
• take blood samples at first contact to facilitate screening, ideally by 10 weeks of pregnancy

• have processes to ensure biological fathers are offered counselling and testing, including, for example:

  • direct contact between the healthcare professional and the biological father to inform and support the request for the need to have a blood test, and highlight the importance of screening

In the fetal anomaly screening programme, where the 20-week screening scan is incomplete, providers should make sure:

• repeat scan appointments are booked
• women understand the importance of attending the repeat scan to complete the screening pathway

In the Down’s syndrome, Edwards’ syndrome and Patau’s syndrome screening pathway, where screening is accepted:

• make sure women complete both components of the test (blood and ultrasound)
• where it is not possible to measure the nuchal translucency, refer women into the quadruple test pathway

Newborn screening programmes

Newborn screening providers should have tracking and failsafe processes in place at all stages of the screening pathway. This is particularly important at handover of care between and within providers, for example transfer to a neonatal unit or specialist children’s hospital, to make sure babies are identified quickly and the parent(s) or carer(s) are offered timely screening for their baby.

References

1. National Institute for Health and Care Excellence (NICE, 2019). Antenatal Care for uncomplicated pregnancies. Clinical Guideline (CG62). [Accessed May 2021.]

2. Dormandy E, Bryan S, Gulliford M, Roberts T, Ades A. Antenatal screening for haemoglobinopathies in primary care: a cohort study and cluster randomised trial to inform a simulation model. The Screening for Haemoglobinopathies in First Trimester (SHIFT) trial. Health Technology Assessment 2010;14(20)

3. Dormandy E, Michie S, Hooper R, Marteau T. Low uptake of prenatal screening for Down syndrome in minority ethnic groups and socially deprived groups: a reflection of women’s attitudes or a failure to facilitate informed choices? International Journal of Epidemiology 2005, 34.

4. Lewis C, Hill M, Skirton H, Chitty LS. Development and validation of a measure of informed choice for women undergoing non-invasive prenatal testing for aneuploidy. European Journal of Human Genetics; 2016 June 1;24(6): pages 809 to 816.

5. Homeyard C and others. Current evidence on antenatal care provision for women with intellectual disabilities: A systematic review. Midwifery, 2016. 32: pages 45 to 57

6. Malouf R and others. ‘We both just wanted to be normal parents’: a qualitative study of the experience of maternity care for women with learning disability. BMJ Open, 2017. 7(3).