While there have been strategies implemented to address cancer screening and disability both in Australia and internationally, to date these have not been properly evaluated.
The following have been identified by the needs analysis performed by Cancer Council Victoria as critical to empowering people with disabilities as well as their carers and families, to participate in cancer screening. It is important to ensure a whole-of-system approach is taken to promote screening to people with disabilities, health professionals, families and carers.
It is also important that programs are co-designed with people who have disabilities and that people with disabilities are provided with practical supports to participate in the co-design process. Information about engaging with people with an intellectual disability is available at Voice at the Table.
Increasing access at health services:
- GPs play an important role in enabling people with disabilities to participate in cancer screening pathways, including associated pathways. It is important for GPs to consider risk factors and the ability of the individual to undergo screening, diagnostic assessment and cancer treatment when discussing suitability with individuals progressing through cancer screening and associated pathways. More information available in the GP toolkit.
- Accessible facilities should be standard in GP clinics and health services. This includes provision of adjustable beds and hoists, as well as accessible toilets, walkways and parking.
- Medical receptionists are encouraged to ask at point of appointment-making whether the patient has any special needs which may require longer appointment times, requesting a female doctor, booking of treatment rooms with height-adjustable beds or an additional nurse or radiographer present. Referral letters should include information about any special needs or limitations to ensure patients receive the appropriate service during diagnostic assessments.
- Health services staff of all levels (receptionists, radiographers, GPs, nurses) throughout the entire screening process should be trained on how to ensure people with disabilities can safely, respectfully and equitably access screening services. Training on engaging with women with disabilities on cervical screening is available at the National Cervical Screening Program toolkit.
- Ensure professional support workers, as well as interpreters (when required) are present for appointments. Relying on friends and family is not best practice and can result in messages being miscommunicated.
Mobilising participation among people with disabilities:
- Make accessible resources available, considering differing needs and abilities (e.g. Easy English and/or pictorial based for people with intellectual disability; video and audio resources are also necessary for those who are hearing or vision impaired). Cancer Council Victoria have produced booklets for bowel and cervical screening which explain the screening process which can be found in the related resources below. There are also Easy English guides named ‘Having a Colposcopy' and ‘Having a Colonoscopy’. In addition; Family Planning NSW have videos discussing bowel, breast and cervical screening.
- General practices can identify women with disabilities who are under-screened or never-screened and flag them in the practice database. Tailored resources can be sent out (e.g. invitation and recall/reminder letters in plain English, Braille, diagrams, large print materials, videos) to encourage participation.
- Carers and disability support workers can be provided with more information on the importance of cancer screening and the skills to promote screenings to the people they care for. An online learning program is available on Family Planning NSW website.
- Day services, residential services and community groups are channels for promoting cancer screening. Consider running peer education programs where people with disabilities are equipped to educate others about cancer screening in a sustainable way, by increasing awareness and mobilising participation.
Involving people with disability in decision making
Informed consent is a person’s agreement to allow something to happen to them (i.e. cancer screening) based on full disclosure of risks, benefits, alternatives and consequences of refusal. For people with an intellectual disability this can be difficult, or impossible to obtain (Carers Victoria).
Throughout the Cancer Council Victoria needs analysis it was identified that for some health professionals, families or carers it can be difficult to explain a procedure to a person with intellectual disability. Where appropriate, use a modified communication style appropriate for each person (i.e. using clear, short, direct language) and make use of accessible materials to communicate the procedure.
It is important to note that health practitioners need a patient’s consent before providing medical treatment. If a patient does not have decision-making capacity to make a medical treatment decision, the Medical Treatment Planning and Decisions Act 2016 sets out the process for health practitioners. Information on the process is available at the Office of the Public Advocate.