Breast and Bowel Screening With a Disability

Breast and bowel screening with a disability: positioning, poo samples and the colonoscopy problem

Two of Australia’s three national cancer screening programmes sit at opposite ends of the accessibility spectrum, and they fail people with disability for completely different reasons.

Bowel screening requires no clinic, no appointment, no undressing and no equipment. A kit arrives in the post, you collect two samples at home, you post them back. It is the most accessible cancer screening test in the country. General population participation is 40.9 per cent for ages 50 to 74, based on 2020–21 data from the Australian Institute of Health and Welfare — 42.8 per cent for women and 38.9 per cent for men. People with disability are below that. A test with essentially no physical barriers is being missed at scale, which tells you the barrier is not the test.

Breast screening requires standing, undressing to the waist, and holding a position while each breast is compressed between two plates at a fixed height. For a substantial number of people that is simply not possible in the standard form. BreastScreen Australia participation for ages 50 to 74 was 50 per cent in 2021–22 on preliminary figures. The Koko and colleagues scoping review published in the International Journal for Equity in Health in 2026 found lower participation among people with disability reported in 19 studies for breast screening and 10 for colorectal.

And both programmes share a problem that gets almost no attention: the follow-up test after an abnormal screening result is far harder to access than the screening test itself.

This is written from inside a New South Wales disability service. We do not run screening programmes and we provide no medical care. This is a practical guide to the obstacles we actually see, and the workarounds that exist. For clinical information, your GP and Cancer Council’s 13 11 20 — free, staffed by cancer nurses — are the right sources.

Bowel screening

Why the easiest test gets missed

The National Bowel Cancer Screening Programme posts a free kit to eligible people every two years. The kit is a faecal immunochemical test: you collect a tiny sample from two separate bowel motions using a small probe, seal them in tubes, and post them in a reply-paid envelope. There is no fasting, no dietary restriction, no clinic visit and no appointment.

So why does it get missed more than the test that requires getting undressed in a clinic?

Reason one: the kit arrives and nobody deals with it. This is the most common failure and it is entirely mundane. The kit comes in the post to a group home or a shared house. It looks like junk mail or a medical thing. It goes in a drawer, or in the bin, or into a pile of mail for a family member who visits fortnightly. Nobody opens it, nobody reads it, nobody puts a date on anything. Two years later another one arrives and the same thing happens.

Reason two: nobody knows whose job the sample is. The kit assumes an independent adult who manages their own toileting in private. For somebody who uses continence aids, needs assistance with toileting, or uses a commode or a bedpan, the collection step requires a conversation that nobody has had. Which worker does it. Is it a personal care task or a health task. Does it need to go in a care plan. Is there consent. Can it be done on the morning shift. The practical answer is almost always yes, straightforwardly — but if nobody asks the question, the default is that it does not happen.

Reason three: the instructions are not accessible. The kit instructions are reasonably clear for a confident reader. For somebody with an intellectual disability, limited literacy, or low English proficiency, they are not. The Koko review identified limited caregiver and clinician knowledge as recurring barriers — and the kit instructions are written for the individual, not for a support team.

Reason four: embarrassment, which is real and gets dismissed. Fear, anxiety, pain and embarrassment appear throughout the barrier research. A test involving your own faeces, handled by or in front of a support worker you did not choose, is genuinely undignified for a lot of people. Treating that as irrational is not useful.

Making bowel screening happen

Order the kit deliberately. Do not wait for one to arrive, and do not assume the last one was lost in the post. Kits can be requested. If the person is between 45 and 49, kits are available on request rather than automatically. If a kit was thrown out, you can get another.

Decide, in writing, who handles the collection. This is the step that actually determines whether the test happens. Name a worker or workers. Put it in the support plan or the shift notes with a date range. Specify that the sample needs to come from two separate bowel motions, that the tubes go in the fridge if there is a delay, and that it needs posting. A task that belongs to everybody belongs to nobody.

Practise first if needed. The probe-and-tube mechanism can be demonstrated with water. For somebody who needs to understand what is going to happen before it happens, a dry run removes most of the anxiety.

Protect dignity in how it is done. Where the person can manage any part of it themselves, let them. Where they cannot, do it in the way that involves the least exposure and the fewest people. Do not discuss it in front of others. This sounds obvious and is routinely got wrong.

Get the Easy Read material. Accessible information about bowel screening exists. Go through it twice, with a gap.

Raise it at the annual health assessment. For people with intellectual disability, MBS item 707 funds a prolonged annual health assessment of more than 60 minutes. The Comprehensive Health Assessment Program (CHAP) — the free Australian tool designed for this, with an adult version from 2023 and a youth version for ages 12 to 18 from 2024 — prompts the GP through which screening is due. This is the appointment where the kit should get ordered.

The part nobody plans for: a positive result means colonoscopy

Here is where bowel screening goes from the most accessible test in Australia to one of the least.

A positive faecal test does not mean cancer. Most positive results are not cancer. But it does mean a colonoscopy is recommended, and a colonoscopy is a serious undertaking for anybody and a major obstacle for many people with disability.

What it involves:

• Bowel preparation. Drinking a large volume of a strong laxative solution the day before, and then having repeated, urgent diarrhoea for hours. The solution tastes unpleasant. For somebody who cannot drink large volumes, has swallowing difficulties, cannot get to a toilet quickly, or cannot be supported through hours of urgent toileting, this step alone can be the barrier.
• Fasting. Clear fluids only for a period beforehand, then nothing. For somebody with diabetes, on a PEG feed, or who does not understand why food has stopped, this is difficult.
• Sedation and a day procedure. Usually conscious sedation or anaesthetic, which means a hospital or day-surgery admission, a consent process, a recovery period, and someone to take the person home and stay with them.
• Dietary restriction for a few days beforehand in most protocols.

Every one of those steps is harder with a disability, and several of them require support hours that may not be in anybody’s plan.

What to do about it. Plan the colonoscopy pathway at the point of the positive result, not when the appointment letter arrives.

• Tell the referring GP and the gastroenterology service what support the person needs, in detail, in writing. They can adapt. Bowel prep regimens vary and some are more tolerable than others; there are split-dose and lower-volume options. A service that knows in advance can plan.
• Ask whether the prep can be supported in a setting with adequate toilet access and staffing. For somebody in supported accommodation this may need extra shift coverage for a day.
• Ask about general anaesthetic rather than conscious sedation if the person cannot cooperate with the procedure awake. This is a legitimate and common accommodation.
• Work out who is taking the person and who is staying with them afterwards, well in advance. A day procedure requires a responsible adult for discharge.

If a positive result leads nowhere because nobody could organise the colonoscopy, the screening test achieved nothing. This happens, and it is preventable with two phone calls made early.

Breast screening

Why mammograms are physically hard

A screening mammogram is an X-ray that requires the breast to be positioned on a plate and compressed. The standard machine requires the person to stand, lean in, and hold still while each breast is imaged, usually from two angles. The plate height is adjustable within a range but the geometry assumes a standing torso.

What that excludes, in practice:

• Anyone who cannot stand for the duration, or at all.
• Anyone who cannot be positioned with their chest against a plate — including people with significant scoliosis, kyphosis, contractures, or high muscle tone.
• Anyone who cannot hold a position still on instruction, because the image blurs.
• Anyone whose seating or wheelchair cannot be worked around, in a room that does not have the space.
• Anyone who cannot tolerate the compression, which is uncomfortable and is held for several seconds.

Cancer Council’s policy work names the absence of accessible imaging equipment as a specific barrier in cancer care, alongside inaccessible parking, transport, ramps and doors. In practice this is a purchasing and room-design issue rather than a clinical one.

Mobile BreastScreen vans — which cover a lot of regional NSW — are more constrained again, because space inside a van is limited and a hoist is generally not available.

The alternatives, and how to ask

Ask the screening service before you book. BreastScreen NSW can be contacted on 13 20 50. Ask specifically: can this person be imaged in your clinic, given these physical needs. Describe the actual situation — seated, cannot stand, cannot hold a position, needs a hoist transfer. Different clinics have different rooms and different equipment, and the nearest one is not the only one. A fixed clinic will usually have more scope than a mobile van.

Ask for the first or last appointment of a session. Less noise, less time pressure, fewer people waiting, and radiographers who are not running behind. The facilitator literature identifies longer appointments and flexible scheduling as enablers; this is the practical version.

Ask for a familiarisation visit. Seeing the machine without being asked to use it removes a lot of the fear. Desensitisation and pre-visits appear repeatedly in the facilitator research.

Ask about ultrasound. A seven-year programme in Japan used breast ultrasonography as the screening modality for women who could not be positioned for standard mammography, and reported low recall rates. Ultrasound does not require compression or the fixed-height standing position a mammogram does — it is done lying down with a handheld probe.

Whether this is available for a given person in Australia is a conversation with the GP and the screening service rather than something you can book directly, and it sits outside the standard BreastScreen pathway. But it is worth having that conversation, because “cannot be positioned for a mammogram” is routinely recorded as “cannot be screened”, and those are not the same thing.

Ask about a diagnostic pathway instead of a screening pathway. If screening is genuinely not possible, a GP can discuss clinical breast examination and, where indicated, diagnostic imaging referral. This is not equivalent to population screening and should not be presented as though it is — but it is better than nothing, and nothing is what a lot of people currently get.

Ask for a female radiographer. The facilitator research identifies female practitioners as an enabler for breast and cervical screening. This is not a preference to be talked out of.

Breast awareness as a complement, not a substitute

For people who cannot access mammography, breast awareness becomes more important — but it needs saying clearly that it is not a replacement for screening, because mammograms find things that cannot be felt.

Practically, for somebody who needs personal care support, the people most likely to notice a change are support workers doing showering and dressing. That has three implications:

• Workers should know what to look for: a new lump, a change in shape, skin dimpling or puckering, nipple change or discharge, redness or thickening, persistent pain in one spot.
• There needs to be somewhere to record it and somebody to escalate it to, with a date.
• The person themselves should be supported to do this where they can, rather than having it done entirely to them.

A dated note saying “lump felt in left breast, upper outer area, 14 October, raised with GP 16 October” is one of the most useful documents in a person’s file. “Mentioned something to the coordinator sometime in winter” is not.

The Australian consensus work that already exists

Weise and colleagues published work in 2024 using a modified Delphi process to reach expert consensus on 52 strategies for improving breast screening access for people with intellectual disability in Australia.

Fifty-two agreed strategies, developed for this country, for this specific gap. The intellectual work of deciding what to do has been done.

What has not happened is implementation. Australia’s National Roadmap for Improving the Health of People with Intellectual Disability reported through its Implementation Governance Group in November 2024 that of 72 short-term actions, 56 had commenced and nine were complete. Cancer Council Australia’s policy priorities include developing an Optimal Care Pathway for People with Disability — a document that does not yet exist — and clarifying roles between health and disability supports.

Until that happens, access depends on a specific person making specific phone calls for a specific individual.

The follow-up problem again

As with bowel screening, an abnormal breast screening result leads to further assessment that is harder than the screening test: diagnostic mammography with additional views, ultrasound, and often a biopsy — core biopsy or fine needle aspiration — performed under local anaesthetic with the person holding still.

For somebody who found the screening mammogram barely possible, the assessment clinic is more demanding, not less. Plan for it at the point of recall:

• Tell the assessment clinic what support is needed, in advance.
• Ask whether biopsy under sedation or general anaesthetic is possible if the person cannot hold still.
• Arrange transport, a support person, and recovery time.
• Expect the appointment to take hours rather than minutes.

What both programmes need from the people around the person

A named owner. The screening registers do not record disability, so invitations are not adapted and no flag reaches the clinic. The Koko review identified this directly. That means nobody in the system is going to make this happen; a named individual has to.

A calendar that the support team actually reads. Bowel every two years, BreastScreen every two years. Written in, with the due dates, not held in somebody’s memory.

A longer appointment, requested at booking. Medicare funds Level C (item 36) and Level D (item 44) consultations for longer GP appointments, and item 707 for a prolonged annual health assessment for people with intellectual disability. Practices that know these exist will book them.

A record of symptoms, with dates. Separate from screening, the thing that catches cancers between screening rounds is somebody noticing a change and escalating it as a change rather than as part of the disability.

Willingness to change services. In 2019, 22 per cent of people with disability aged 15 and over reported experiencing discrimination, against 15 per cent of people without disability, and around a quarter of those who experienced it from healthcare staff subsequently avoided health facilities. Around two in five reported difficulty accessing medical facilities. If a service handles somebody badly, the answer is a different service, not more persuasion.