Statutory guidance

Population screening support for carers

Updated 19 March 2021

The NHS screening programmes in England save lives, reduce illness and disability and promote choice. The programmes aim to ensure that everyone, regardless of their personal circumstances, can access the screening tests they are eligible for.

Many of the conditions we screen for are more common in under-served groups than the rest of the population. Despite this, we know people in under-served groups are often less likely to be screened.

Under-served groups include people who face barriers in accessing services due to factors including geographical location, race, ethnicity, deprivation, age, disability, sex and sexual orientation.

Carers and care providers play an essential role in making sure people they care for can access screening.

The term carer includes anyone, including children and adults, who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support.

It is important that carers also look after their own health. They should register with a GP and consider attending screening themselves.

This guidance supports carers and care providers to:

• understand and explain screening
• understand which screening tests the people they care for are eligible for
• help people they care for to make an informed decision about screening and any follow-up tests or treatment
• understand best interest decisions
• access practical guidance and information
• understand the Reasonable Adjustment Flag national NHS record system

Screening tests at a glance

The following animations briefly explain more about what screening is and the screening tests offered to people at different stages during their lives.

The basics of screening

What is screening?

Lifetime screening pathways

Female lifetime screening pathway

Male lifetime screening pathway

Screening offered to pregnant women and newborn babies

Screening for pregnant women and newborn babies

Population screening: applying All Our Health helps frontline health and care staff to raise awareness of NHS population screening programmes among the people they care for.

The printable screening timeline is a double-sided A4 resource that explains the screening tests offered to people during their lifetime.

If a carer, or the person they care for, develops any signs or symptoms of any of the conditions we screen for at any time, they should see a GP. They should not wait for a screening test.

The NHS offers screening tests to people depending on their age and sex as below.

People with diabetes aged 12 and over

People with diabetes aged 12 and over are eligible for diabetic eye screening.

Diabetic eye screening involves a screener putting drops in the eyes and then taking images of the back of the eye with a digital camera. Screening is offered every 12 months to anyone with diabetes aged 12 or over. Extra screening tests are offered to people who have diabetic retinopathy but do not yet need treatment and to pregnant women who have diabetes. This is because the risk of sight loss is greater in these groups.

Diabetic eye screening checks for signs of diabetic retinopathy, a condition caused by diabetes which damages the small blood vessels in the retina at the back of the eye. If left undiagnosed and untreated, diabetic retinopathy can cause blindness.

See more detailed information about diabetic eye screening.

Pregnant women and newborn babies

The NHS offers screening tests for pregnant women and newborn babies.

Screening tests are offered during pregnancy to try to find health problems that pregnant women or their babies may have. The tests – ultrasound scans, blood tests and a questionnaire – can help people make choices about care or treatment during pregnancy or after babies are born.

Whether or not to have each antenatal screening test is a personal choice for the pregnant woman.

Some screening tests are offered for babies soon after they are born. We offer these so babies can be given appropriate treatment as quickly as possible if needed.

See more detailed information about screening tests for pregnant women and newborn babies.

ANNB screening: supporting women with learning disabilities has guidance for health professionals to support pregnant women with learning disabilities to access screening during their pregnancy and for their newborn babies.

Women aged 25 and over

All women and people with a cervix aged between 24 and a half and 64 are invited for cervical screening. People aged 24 and a half to 49 are invited every 3 years, and people aged 50 to 64 every 5 years.

Cervical screening checks for abnormal cells in a small sample taken from the cervix. The sample of cells is tested for certain types of human papillomavirus (HPV). HPV can cause abnormal cell changes which, if left untreated, can develop into cervical cancer.

Screening can help detect cervical cancer at an early stage, when treatment is most likely to be effective. Cervical cancer is a serious illness which you can die from.

See more detailed information about cervical screening.

Cervical screening: supporting women with learning disabilities has guidance for health professionals to support women with learning disabilities to access cervical screening.

Women aged 50 and over

Breast screening is offered every 3 years to women aged 50 up until their 71st birthday.

Breast screening uses an X-ray test called a mammogram to check for signs of cancer.

Breast screening can detect breast cancer at an early stage, when treatment is most likely to be effective. Breast cancer is a serious illness which you can die from.

See more detailed information about breast screening.

Breast screening: supporting women with learning disabilities has guidance for health professionals to support women with learning disabilities to access breast screening.

Men and women aged 60 and over

People aged 60 to 74 are automatically invited to take part in bowel cancer screening every 2 years. People aged 75 and over can request screening every 2 years via a self-referral process.

Bowel cancer screening looks for blood in a sample of poo. Eligible people receive a home test kit by post and are asked to return the collected sample for laboratory analysis.

Bowel cancer screening can detect bowel cancer at an early stage, when treatment is most likely to be effective. Bowel cancer is a serious illness which you can die from.

See more detailed information about bowel cancer screening.

Bowel cancer screening: helping people with learning disabilities has guidance for health professionals to support people with learning disabilities to access bowel cancer screening.

Men aged 65 and over

Men receive an abdominal aortic aneurysm (AAA) screening invitation by post during the year they turn 65.

AAA screening involves an ultrasound scan of the tummy to measure the width of the aorta. AAA screening checks for weakness and swelling of the aorta, the main blood vessel that runs from the heart down through the chest and tummy. Men aged 65 and older are most at risk of having an AAA.

An AAA will often cause few or no obvious symptoms. Large aneurysms are rare but can be very serious. As the wall of the aorta stretches it becomes weaker and can burst, causing internal bleeding. Around 85 out of 100 people die when an aneurysm bursts.

See more detailed information about AAA screening.

Abdominal aortic aneurysm screening: reducing inequalities has guidance for health professionals to support men from under-served groups to access AAA screening.

Assessing capacity and the Mental Capacity Act

The Mental Capacity Act aims to protect people who may lack the mental capacity to make their own decisions about their care and treatment. It applies to people aged 16 and over who may lack capacity due to:

• dementia
• a severe learning disability
• a brain injury
• a mental health illness
• a stroke
• unconsciousness caused by an anaesthetic or sudden accident

Principles of Mental Capacity Act

The principles of the Mental Capacity Act are:

1. Always assume the person cared for has the capacity to make a decision themselves, unless proved otherwise.
2. Wherever possible, help them make their own decisions.
3. Do not treat them as lacking the capacity to make a decision just because they make an unwise decision.
4. If a decision is made for someone who does not have capacity, it must be in their best interests.
5. Treatment and care of someone who lacks capacity should have the least impact on their rights and freedoms.

Assessment of mental capacity

Before deciding if a person lacks capacity steps should be taken to check if they are able to make a decision themselves. For example, could information be explained or presented better in a different way, by someone else, at a different time or in a different place?

Information may need to be repeated over several weeks before capacity can be assessed.

Carers or health professionals should use the following questions to decide if a person has capacity to make an informed personal choice about screening.

1. Can they understand the information provided about the screening test? Easy read versions of screening information are available.
2. Can they retain this information?
3. Can they weigh up any potential benefits and harms of screening?
4. Can they make a decision about screening?
5. Can they communicate their decision?

If the answer is yes to all these questions, the person has capacity to consent to screening.

If the answer is no to any of these questions, the person does not have capacity to consent to screening.

Person who has capacity to make informed choice about screening

This person has the right to accept or decline the offer of screening.

If they want to attend screening, they or their carer can ask the screening service to provide any reasonable adjustments. If they have a learning disability, they or their carer should contact their learning disability team to help with this.

If they make a personal informed choice not to attend screening, they or their carer should ask for their decision to be documented on their GP record and health action plan.

Person who does not have capacity to make informed choice about screening

If the person might regain capacity in the future to make an informed decision, then their capacity should be reassessed at a later date.

If the person lacks capacity, then a best interests decision is required.

Best interests decisions

A best interests decision is when a carer or a GP makes a decision about someone else’s care because they cannot decide for themselves.

Before completing a best interests assessment, it is important to consider:

• whether the person might regain capacity to decide again in the future
• whether the person has been involved in the conversation as much as possible, even if they lack capacity
• what the person’s wishes are
• the views of other people who know the person well – such as their friends, relatives, GP or learning disability team
• if there are more potential benefits of screening than risks of distress
• if the carer has thought about how reasonable adjustments could make screening possible, for example through pre-visits or longer appointment slots

Remember that the person’s learning disability team can support the carer. An independent mental capacity advocate (IMCA) can also be contacted for support or advice if the carer is struggling to make a decision. The carer will need to know if anyone has lasting power of attorney or if there are any court appointed deputies (whether anyone has been given the legal right to make decisions for the person).

Decision made to screen

If a carer or GP agrees that it is in the person’s best interests to be screened, this decision should be noted in the person’s GP record and health action plan.

The learning disability team can help to make sure reasonable adjustments are in place to improve access to screening. A few attempts may be needed before a successful screening.

If screening cannot be carried out after a few attempts, refer to the guidance on decisions made not to screen.

Decision made not to screen

If the carer or GP decides it is not in the person’s best interested to be screened, this decision should be noted in the person’s GP record and health action plan.

A carer or GP may decide it is not in the person’s best interests because:

• previous attempts of medical interventions were too difficult
• the potential risk of distress is higher than the potential benefits of screening

In this case it is important to:

• have a long-term plan to check for symptoms of the conditions screened for, which should be attached to the person’s health action plan
• check if reasonable adjustments could be made which might make screening possible in the future

If at any time the person cared for develops any signs or symptoms of any of the conditions screened for, they should see their GP. Do not wait for a screening test.

Personal information

Carers can check that the person they care for is on the GP register. We recommend that the person cared for approves the sharing of their GP record personal data with NHS screening services so that the screening service can provide any reasonable adjustments needed.

The NHS screening programmes use personal information from NHS records to invite people for screening at the right time. Public Health England also uses this information to make sure people receive high quality care and to improve the screening programmes. Find out more about how information is used and protected, and the options. Find out how to opt out of screening.

Reasonable adjustments

The NHS must make it as easy for disabled people to use health services as the rest of the population. This is called making reasonable adjustments.

Improving access to screening

The person cared for may need more help and support before and during screening. Some things carers can do to help include:

• accompanying the person to their appointment to help reduce anxiety
• preparing a pack or bag for the person to bring to appointments, which contains their health information and any reasonable adjustments they need
• asking if screening is possible in a location the person is already familiar with
• asking the GP to make a best interests decision if the carer has no power of attorney (if the carer has not been given the legal right to make decisions for them)

If the person cared for has a learning disability or autism, they may also benefit from the carer speaking to their learning disability team to ensure that the screening services make any reasonable adjustments required. This can include, for example, sending out easy read information, allowing extra time for appointments or arranging a chaperone.

Shared learning examples

Each person is different. Carers can use their knowledge of the person’s needs, likes and dislikes, and speak to others involved in their care to discuss what could be done to make screening accessible.

Things that could affect the person during screening include:

• appearance – for example, someone might refuse to sit on a red sofa or refuse to speak to someone who is wearing black clothes or wearing glasses
• temperature – for example, someone might dislike feeling hot or cold
• sound – for example, someone might dislike the sound of a machine
• the people present – for example, someone might feel anxious if there are too many people in the room or if they are not with a familiar person
• human interaction – for example, someone might not like making eye contact or would prefer to talk via another person
• physical access – for example, someone might need help getting on to an examination table or need space for a wheelchair

Examples of things that can help to improve screening appointments for people who need additional support include:

• the carer and learning disability team talking to each other so they can make reasonable adjustments, such as sending out easy read information, allowing extra time for appointments or arranging chaperones
• the carer accompanying the person to appointments to help reduce any anxiety
• asking a GP to make a best interests decision if the carer does not have power of attorney over the person they care for and the person cannot consent to screening
• arranging screening for someone who has difficulty walking or moving at a venue which is accessible to them
• arranging screening for someone with autism at a venue they are used to visiting on a regular basis
• warming up ultrasound gel for ultrasound scans for someone who does not like new sensations
• showing a photo of their cat to someone who will only speak to their pet, so they can answer questions
• showing video footage of goals being scored on a smartphone behind the screener’s head to someone who loves football and would otherwise find it difficult to keep their head still during a diabetic eye screening appointment
• the screener building a connection with someone who is anxious around new people by looking through photos with them before screening

Contact the local service

It is important for many people to build trust and familiarity with the people and places involved in screening. This can help to reduce anxiety. Carers should contact the local screening service if they think the person they care for would benefit from any or all of:

• a pre-visit or ‘desensitisation’ visit
• 2 appointments
• a longer appointment
• familiar music, pictures, videos or people at the appointment
• disabled wheelchair access
• help in finding a learning disability nurse
• help from their learning disability nurse
• mobility support

Find the local service

Details are available on how to find local screening services for :

• diabetic eye screening
• newborn hearing screening
• breast screening
• AAA screening

To find contact details of local providers of other screening programmes, speak to a GP.

Explain screening

It is important to explain screening as simply as possible. Easy read guides explaining screening tests in simple text and images are available for:

• diabetic eye screening
• screening tests for pregnant women and newborn babies
• cervical screening
• breast screening
• bowel cancer screening
• AAA screening

Information may need to be repeated for some people to fully understand it. Some people benefit from hearing the information repeated across several days.

Screening for trans and non-binary people

Trans and non-binary people are invited for screening according to how they are registered with their GP. If the person cared for is trans, the carer should check that their GP knows.

More information is available on screening for trans and non-binary people.

More information

Other useful sources of information include:

• NHS.UK social care and support guide
• Carers UK
• Carers Trust
• Mencap
• Foundation for people with learning disabilities
• NHS screening overview