Step 8: Strategies for enabling people living with disability to participate in cancer screening

steps This section covers the following steps:

Step 8.1 Audit barriers to cancer screening for people with disability in your health service
Step 8.2 Implement your improvement ideas
Step 8.3 Use resources and programs designed for people with disability
Audit table Audit barriers to cancer screening for people with disability in your health service

The information below provides a range of suggestions on actions that can be taken to support increased participation in cancer screening by people with disability.

These strategies should be used in addition to strategies described in

  • Step 2: Use good practice strategies for increased participation in cancer screening
  • Step 3: Address health literacy as a barrier to screening.

Use the Action plan template to implement the actions your team decides to undertake.

Practice point

Practice point

“People with disability, their carers and families ultimately hold the most valuable insight when it comes to planning and designing health services and facilities for improved inclusion; for guiding us on improving our systems and processes; and for advising us on what characterises highly inclusive attitudes and behaviours”

- NSW Health Disability Inclusion Action Plan.

Seeking feedback from patients with disability and/or working with a local Disabled People’s Organisation to complete the audit table and to develop and prioritise ideas for improvement, will strengthen your practice’s delivery of patient centred-care for people with disability.

People with disability and cancer screening

People with disability face barriers to accessing health care, including cancer screening: 

  • More than 1 in 5 people receiving health services in NSW have a disability.28
  • 1 in 5 people with disability aged under 65, either delayed or did not see a GP because of the cost.29
  • 2 in 5 people with disability aged under 65 had difficulty accessing medical facilities (GP, dentist, hospital).29

It is important for health services to recognise the rights of people with disability to access cancer screening and to take steps to enable people with disability to increase participation in screening.

Success in practice:

Success in practice:

“I have never been asked about my sexual health by any GP."

“My GP always asks me when I had my last blood test but not when I had my last cervical screen."

“The only thing stopping me [from having a Cervical Screening Test] is the bed!”

- Women with disability, Tweed Heads and Richmond Valley, NSW30

Step 8.1 Audit barriers to cancer screening for people with disability in your health service

Disability adds a layer to personal, cultural and social barriers to cancer screening.30

Key to the delivery of person-centred care is putting people with disability, their carers and families at the centre of decision making.28

Disabled People’s Organisations (DPOs) are organisations that are led by and made up of people with disability.

DPOs are representative organisations of people with disability, and distinct from representative organisations for people with disability.

Visit Disable Person’s Organisations Australia to learn more.

The audit table below will support your practice to identify:

  • barriers to cancer screening for people with disability that exist within your practice
  • improvement ideas that will support your practice to facilitate participation in cancer screening.

 

Download Audit table

Audit table

Barrier

Reflection questions/processes

Improvement ideas/Follow-up actions

Note: Use the Action plan template to implement your ideas

Accessibility:

  • The design of buildings and equipment.29
  • Access to suitable transport and transport cost.29
  • The duration and lack of flexibility of screening appointment times.30
  • An absence of trained service/practice staff to support, encourage and assist people living with a disability with screening.30
  • Attendance at screening services was considered challenging for some people requiring complex thinking and organisation.30

 

  • Answer and document the questions outlined in table 1 of ‘Fitting disability into practice’ to better understand if your service meets the needs of people who use wheelchairs.
     
  • Does your practice provide patients with disabilities any support to access transport to attend your practice and/or screening services?
     
  • Does your practice have height adjustable exam tables and equipment?
     
  • Reflect on the barriers and engagement strategies to cervical screening for women with disabilities outlined in the Toolkit for engaging under-screened and never-screened women in the National Cervical Screening Program  and on Family Planning’s ‘Just Checking’ website.
     
  • Has your team spoken with your local BreastScreen NSW service or read the BreastScreen information for women with disabilities brochure so that you can support people with disability to understand the breast screening process?
     
  • Do you ask patients with disability what support they need to complete a bowel cancer screening kit?
     
  • Does your clinical team need further training to feel comfortable:
    • communicating effectively and respectfully with people with disability
    • obtaining consent and performing cervical screening tests for people with disability
       
  • Does your practice routinely offer patients with disability longer appointment times?
     
  • Is the availability of appropriate appointment slots a barrier to access for people with disability within your practice? (Note: Patient feedback may be required.)

 

Cost:

  • 1 in 5 people with a disability delayed or did not see a GP due to cost.29
  • Costs associated with screening is an identified barrier to screening for people with disability.30

 

  • Does your practice have a policy or process for ensuring cost is not a barrier to health care for people with disability (e.g. offering bulk billing when appropriate)?

 

Lack of communication and education:

  • Women with disability who participated in research about cancer screening in Northern NSW reported:
  • that health professionals did not talk to them about cancer screening
     
  • limited knowledge about the reason for and benefits of cancer screening
     
  • wanting women with disabilities to be included in screening education programs and campaigns  to improve the personal relevance of screening messages
  • False assumptions about people with disabilities sexual orientation and preferences are a barrier to health professionals discussing cervical screening with people with disability.31

 

  • Do you know the screening status of people with disability in your practice?
     
  • Does your clinical team have the skills they need to discuss cancer screening with patients with communication limitations?
     
  • Does your clinical team ask patients with disabilities about their cancer screening history, including cervical screening?
     
  • Does your practice display screening promotional materials that feature people with disability? (See Step 3 for links to materials that can be downloaded or ordered for free.)
     
  • Is your team familiar with Family Planning’s ‘Just Checking’ website that includes a range of cancer screening educational resources for:
    • people with intellectual disability
    • building the confidence of health professionals to effectively discuss cancer screening with patients with intellectual disability, including through clarification of common misperceptions about sex and sexuality for people with intellectual disabilities?

 

Sexual abuse and discrimination:

  • Women with disabilities’ attitudes towards breast and cervical screening may be impacted by30:
  • Previous past experiences of physical and sexual abuse; and
  • Negative experiences and contact with the medical profession
  • People with disability, especially those with intellectual disability or mental illness, are at high risk of violence perpetrated against them, especially sexual exploitation.32
     
  • 1 in 6 people with disability aged under 65 experienced discrimination by health staff).29

 

 

Competing priorities:

  • Contact with health professionals is often focused on care and treatment related to specific health issues (rather than preventative actions such as screening)

 

  • Is screening integrated into your health assessments, so it forms part of routine care for patients with disability?

 

The attitudes of carers and family members may influence some people’s perceptions of the risks of getting breast and cervical cancer and their motivation to participate in screening programs.

  • Do you engage family and carers in discussions about the importance of preventative health care, such as cancer screening?

 

 

Note: The barriers and improvement ideas in the audit table above were guided by the following resources:

Step 8.2 Implement your improvement ideas

Use the Action plan template to:

  • document which of the improvement ideas identified in Step 1 that your team will implement
  • plan the implementation of your ideas
  • track progress and identify follow-up actions.
 

Step 8.3 Use resources and programs designed for people with disability

Screening program promotional materials:
  • Brochure: BreastScreen information for women with disabilities.
  • Brochures/booklets: Large print and braille brochures and booklets can be ordered from the National Cervical Screening Program.
  • The Family Planning NSW ‘Just Checking’ website provides a range of information and resources for increasing the participation of people with intellectual disability in bowel, breast and cervical screening. ‘Just Checking’ was funded by Cancer Institute NSW.

Other helpful resources:

  • Advances in technology have improved the range of communication options available to people who are deaf, hard of hearing or who have a speech impairment. The Australian Government’s Accesshub is a central source of information on the range of communication options available to these people. 
  • For a small fee, Communication Rights Australia provides tailored communication disability workshops via skype. These workshops can assist your practice to identify and respond to the needs of people with communication disabilities.
  • The RACGP’s Standards for General Practice 5th Edition Criterion C1.4 specifies requirements for meeting the needs of patients with communication impairments.
  • Monash University’s Centre for Developmental Disability Health provides free online learning modules for improving the health and wellbeing of people with developmental disabilities.