Guidance

Population screening: pathway requirements supporting information

Published 21 June 2021

Applies to England

This document contains supporting and background information relevant to all current population screening programme pathways. Programme-specific information is available separately for:

• 20-week screening scan
• abdominal aortic aneurysm screening
• bowel cancer screening
• breast screening
• cervical screening
• diabetic eye screening
• Down’s syndrome, Edwards’ syndrome and Patau’s syndrome screening
• infectious diseases in pregnancy screening
• newborn and infant physical examination screening
• newborn blood spot screening
• newborn hearing screening
• sickle cell and thalassaemia screening

Detailed information on each of the population screening programmes is available on GOV.UK.

Informed choice

The population screening programmes in England operate under the principle of ‘personal informed choice’, as outlined in the UK National Screening Committee’s (UK NSC) guidance on the development, review and production of information to support UK population screening programmes. NHS England (NHSE) provides information to help people to make informed choices about screening tests offered to them. People may make a decision whether to be screened based on the:

• condition being screened for
• testing process
• risks, limitations, benefits and uncertainties of the test
• potential test outcomes and ensuing decisions

If someone is given access to the above information and chooses not to have screening, the screening provider must respect this decision as a valid choice. It is not acceptable to persuade or pressure someone to have screening if they have chosen not to.

An individual can choose to opt out of the young person and adult NHS screening programmes (pregnant women will receive the offer of screening in each pregnancy). See guidance on opting out of screening. This process means a person no longer receives screening invitations. They can opt back in to screening again at any point in the future (if they still meet the relevant programme’s eligibility criteria).

Screening providers are encouraged to use a variety of prompts and reminders to maximise screening attendance while supporting informed choice. These may include:

• text reminders
• GP endorsement letters

Screening information

NHSE provides screening information to support the invitation process for all population screening programmes in England (HTML versions of national screening invitation leaflets and follow up leaflets are available on GOV.UK). This nationally-produced information must be included with, or signposted in, invitation letters or face to face offers of screening. The information may be supplemented with, but not replaced by, locally produced information.

Providers should consider people’s communication needs, including the use of interpreters and translated materials, and follow the Accessible Information Standard by law. Guidance is available on the use of accessible information (see NHS population screening: identifying and reducing inequalities. This includes using national resources, such as easy guides, to provide information to people with a disability or sensory loss in a way they can access and understand.

Digitalisation of screening information

Since April 2021, the majority of screening information has been provided digitally (online). Printed leaflet information continues to be available for people unable to access information online.

In antenatal and newborn screening, only women who would not be able to easily access digital information should be given a leaflet.

In young person and adult screening, printed leaflets should only be sent with the first invitation letter to screening (the ‘call’ or prevalent invitation). All subsequent (‘recall’ or incident) invitations should signpost to information online about the screening procedure and its possible benefits and risks. Most programmes also have a summary of this information on the reverse of the invitation letter.

See guidance on moving to digital screening information.

Education and training

Education and training resources for screening professionals are available, covering guidance for training, initial screener training and continuing professional development (CPD) for each of the screening programmes, as well as general information on screening.

This includes:

• e-learning resources, including the introduction to population screening module which we encourage all screening professionals to complete
• taught courses, including a masters module on screening from Warwick Medical School and a screening masterclass
• programme-specific education and training guidance for the screening workforce in:
  • abdominal aortic aneurysm screening
  • bowel cancer screening
  • breast screening
  • cervical screening
  • diabetic eye screening
  • fetal anomaly screening
  • infectious diseases in pregnancy screening
  • newborn and infant physical examination
  • newborn blood spot screening
  • newborn hearing screening
  • sickle cell and thalassaemia screening

Quality assurance

Screening services need to be regularly reviewed to help maintain high quality services and support improvements. Providers must participate fully in national quality assurance (QA) processes.

The Screening Quality Assurance Service (SQAS):

• supports services to improve quality
• assesses the quality of local screening programmes
• monitors compliance with standards
• undertakes regional quality assurance visits
• provides incident advice and support for investigations
• gives expert advice and support through regular attendance at screening programme board meetings
• organises network and educational meetings
• provides targeted support to providers

Find contact details for the 4 regional QA teams in England.

Incident management

Providers should comply with:

• guidance on managing safety incidents in NHS screening programmes
• the NHSE serious incident framework

Standards and programme specific operating models

There are defined standards for each NHS screening programme to ensure services are of a high quality.

There are programme specific operating models (PSOMs) which explain the QA process for:

• abdominal aortic aneurysm screening
• antenatal and newborn screening
• bowel cancer screening
• breast screening
• cervical screening
• diabetic eye screening

New technologies should not be used for screening unless approved by the UK NSC through the programme modification process.

Inequalities

The screening inequalities strategy developed by Public Health England sets out approaches to reducing inequalities and ensuring equitable access to screening.

The NHS England Standard Contract Service Condition 13 (SC13) outlines the contractual requirements for equity of access, equality and the avoidance of discrimination.

Under the Equality Act 2010, screening providers have a legal duty to make reasonable adjustments so that screening services are accessible to everyone, including people with one or more protected characteristics.

Screening provider responsibilities

Local screening providers should make sure systems are in place to address health inequalities and ensure equity of access to screening, subsequent diagnostic testing and any treatment or interventions for everyone invited for screening.

Providers must be able to demonstrate evidence of how this has been done on request from their commissioners.

Providers should:

• take a systematic approach to identifying and addressing screening inequalities by conducting a health equity audit (HEA) that includes equality characteristics, socioeconomic factors, local vulnerable populations and geographical variation
• provide screening in a way that addresses local health inequalities, tailoring and targeting interventions when necessary
• provide screening in a culturally sensitive way to meet the needs of local diverse populations
• involve service users in developing and evaluating the service
• apply high levels of diligence when considering excluding people with protected characteristics from screening and follow equality, health inequality and screening guidance when making such decisions

Screening HEAs should result in screening inequalities action plans, which are monitored at programme boards.

Providers should have procedures in place to identify and support people who are considered vulnerable or underserved (see NHS population screening: identifying and reducing inequalities).

Providers will comply with safeguarding policies and good practice recommendations for such people.

Providers will include appropriate cohorts of local armed forces personnel and their dependents who are registered with defence medical centres within their responsible population boundaries.

Providers should take steps to ensure equitable access to screening for people in secure settings (see guidance on reducing inequalities in secure settings), residential mental health facilities (see guidance on screening access for people with severe mental illness), nursing homes and other residential settings.

Data and intelligence

NHSE collects and monitors data to ensure safe and effective programme delivery. Data analysis helps to inform and support service improvements.

Key performance indicators (KPIs) are in place for each of the NHS screening programmes. The NHS population screening: reporting data definitions document outlines the KPIs for each programme.

Guidance is available on submitting KPI and other screening programme data.

Annual NHS screening programmes KPI reports are available.

Research advisory committees

Screening research advisory committees (RACs) are in place to assess applications to access screening data for research purposes. Each young person and adult screening programme has its own RAC, and a single RAC covers all antenatal and newborn screening programmes.

Information governance

Guidance is available on how and why population screening programmes collect and process data. It also covers how personally identifiable data may be shared in order to:

• invite people for the right screening at the right time
• ensure the safety and effectiveness of the screening programmes

Personally identifiable data is never published.

Governance and leadership

Providers should:

• co-operate with, and have representation on, local oversight arrangements as agreed with the commissioner
• identify a Trust director who is responsible for screening
• ensure internal clinical oversight and governance, including evidence of:
  • an identified clinical lead and a programme manager or equivalent
  • compliance with the NHS Trust and NHSE information governance/records management
  • user involvement, experience and complaints
  • checks and audits procedures
  • a regularly-reviewed risk register and mitigation plans
  • the Trust board being assured of the quality and integrity of screening services
  • a local screening board, including relevant internal and external stakeholders, which reports to the Trust board
• ensure that there is regular monitoring and audit of screening
• produce an annual report of screening services, which is signed off by the Trust board
• ensure screening services are delivered by a trained workforce that meets national requirements

Keeping in touch

Providers should regularly check for the latest national screening programme documentation and guidance that is published on GOV.UK.

You can also subscribe to the UK NSC blog, which covers its role in making evidence-based recommendations on new and changed screening programmes.