Improving care for people with intellectual disability - Removing barriers to general practice

By Dr Jodie Bailie, University Centre for Rural Health and Centre for Disability Research and Policy, The University of Sydney, Bradley Shea, Faculty of Medicine and Health, The University of Sydney, Dr Nicola Fortune, Centre for Disability Research and Policy, The University of Sydney, Professor Nicholas Lennox, Queensland Centre for Intellectual and Developmental Disability, University of Queensland, Dr Sally Hall Dykgraaf, Rural Clinical School, Australian National University  , Professor Ross Bailie, Faculty of Medicine and Health, The University of Sydney 

Source: APNA Primary Times Winter 2023 (Volume 23 Issue 1)

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This is a synopsis of an article we published in 2022 in the open-access journal, BMC Primary Care, titled: ‘Access to general practice for people with intellectual disability in Australia: a systematic scoping review’ (doi:10.1186/s12875-022-01917-2). The article presented findings from a study of peer-reviewed literature to identify factors impacting access to general practice for people with intellectual disability in Australia. 

While all patients are being impacted by falling bulk-billing rates and increased demand for GP appointments, patients with intellectual disability face particular challenges in accessing health care. Evidence shows that people with intellectual disability experience poorer health outcomes compared to the general population. Therefore, it is crucial to remove or minimise any obstacles they may encounter in their quest to access general practices. 

People with intellectual disability make up about 1–3% of the Australian population and, compared with the general population, experience poorer health outcomes, shorter life expectancy and higher mortality rates. Difficulties in accessing appropriate general practice care is thought to contribute to these inequitable health outcomes.¹  

Previous studies have identified multiple barriers to access to general practice for people with intellectual disability, such as communication challenges, lack of training, education for practice staff regarding the care needs for people with intellectual disability, and perceived lack of time during appointments.^2,3 

 

Scoping review 

Our research team identified a need for a more granular analysis of access and access barriers that considers both the supply-side (service providers) and demand-side (service seeking) dimensions.  

To address this, in 2022 we undertook a scoping review of the existing peer-reviewed literature to identify factors impacting access to general practice for people with intellectual disability in Australia,⁴ using a wholistic framework of access proposed by Levesque and colleagues.⁵ We identified 44 eligible Australian studies.  

Our review was timely, as in 2021 the Australian Government released the National Roadmap for Improving the Health of People with Intellectual Disability,6 a policy initiative aimed at addressing health inequity experienced by people with intellectual disability. 

 

Factors impacting on access to general practice  

Commonly reported supply-side factors (service providers) impacting on access to general practice identified in our review were:  

• the level of intellectual-disability-specific education or experience among GPs and practice staff 

• whether there was sufficient consultation time for patients with intellectual disability 

• the adequacy or otherwise of service coordination  

• the provision of targeted health assessments for patients with intellectual disability.  

 

The most frequently reported demand-side factors (service seeking) included:  

• the ability of GPs, practice staff and patients with intellectual disability to communicate effectively 

• the involvement of support people during consultations 

• the level of health literacy among patients with intellectual disability and their support networks 

• knowledge of the relevant medical history of patients with intellectual disability, both by the patients and their support workers.  

Although factors on both the demand and supply sides were uncovered, our review identified that demand-side factors – which impact the ability of patients to access services – receive less attention in the peer-reviewed literature. This is despite contemporary evidence about the need for patient-focused care and for interventions aimed at improving access, targeting not only the availability of general practice but also the level of awareness and ability to access these services in the intellectual disability community. 

Our review identified that demand-side factors – which impact the ability of patients and populations to access services – receive less attention. 

 

Enhancing access to general practice for people with intellectual disability  

Based on our review findings, we propose a suite of strategies on both demand and supply sides to enhance access to general practice for people with intellectual disability (Boxes 1 and 2).  

Box 1: Demand-side strategies to enhance access 

• Create easy-to-read materials to inform people with intellectual disability about general practice services, the importance of preventive care, regular preventive health assessments, and treatment of common health conditions. These materials could then be distributed to patients to aid in communicating health messages.  

• Provide communication training for GPs and other practice staff caring for people with intellectual disability. This could include regular in-service style presentations from external bodies or designated practice staff members who have undertaken training.  

• Strengthen training for support workers, families and allies regarding empowering and advocating for people with intellectual disability, facilitating independent decision-making, and maintaining personal medical records. For example, physical worksheet or booklet resources could make it easier for support people to discuss and record the wishes, questions and concerns that people with intellectual disability may have around their health care.  

• Raise awareness of the availability and importance of general practice and preventive care among people with intellectual disability, their families and support networks.  

• Strengthen health literacy among all people with intellectual disability, their families and support workers. For example, create lists of accessible health information resources that GPs and practice nurses can recommend to patients. 

• Checklist-style resources could also be developed to help people with intellectual disability or their support people collate their medical records and ensure they have relevant information with them at appointments. 

 

People with intellectual disability experience poorer health outcomes, which could be partly due to difficulties in accessing appropriate general practice care. 

Box 2: Supply-side strategies to enhance access 

• Offer adequate remuneration for GPs and practice nurses to provide care, including longer appointments or out-of-hours follow-up.  

• Among general practices, promote health assessments targeted for people with intellectual disability and associated follow-up care through raising awareness and developing systems to implement in general practice. This could include automated reminders or supported internal campaigns to remind GPs and practice nurses of targeted health assessments and to encourage uptake. 

• Strengthen integration of allied health, disability, and specialist medical services with general practice, and improve communication between these services. This could be through GP Management Plans, Team Care Arrangements, and yearly health assessments.  

• Ensure general practices are physically accessible and suitable for people with intellectual disability, for example, by offering quiet spaces, shortened waiting room periods or flexible appointment times. It may be possible to provide appointments in a designated ‘quiet period’ during the day, during which efforts could be made to reduce stimuli from music, TV, lighting and other sources. We also recommend portable waiting room furniture that can be moved to accommodate mobility aids, or relocated to the most appropriate areas within a practice. 

• Upgrade clinical information systems to enable identifying, recalling and reminding people with intellectual disability to attend general practice, including specifically for health assessments and follow-up care. This could include the development of a list of patients with intellectual disability.  

• In clinical information systems, automatic alerts could be set up so practice staff can prompt people with intellectual disability to return for appointments, as well as prompts for practice staff to book follow-up appointments opportunistically when people with intellectual disability present in a practice. 

• Practice staff could provide opportunities for constructive feedback from patients with intellectual disability on access to general practice.  

• Improve the nature and extent of intellectual disability content during medical education and nursing training. This could include opportunistically involving students on placement in encounters with people with intellectual disability, where possible. 

 

 

Conclusion 

Too many people with intellectual disability are dying too young from preventable causes. To ensure that we have an equitable primary health care system, we must look at ways to improve access to general practice for people with intellectual disability. Our research provides an overview of the research in Australia on the factors impacting access to general practice. We have identified that we need to address access barriers on both the demand and supply sides.  

 

References 

1 JC Weise, P Srasuebkul and JN Trollor, ‘Potentially preventable hospitalisations of people with intellectual disability in New South Wales’, Med J Aust, 2021, 215(1):31–36, doi:10.5694/mja2.51088. 

2 AJ Doherty, H Atherton and P Boland et al., ‘Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review’, BJGP Open, 2020, 4(3):bjgpopen20X101030.  

3 J Bailie, A Laycock, V Matthews and RS Bailie, ‘Increasing health assessments for people living with an intellectual disability: lessons from experience of Indigenous-specific health assessments’, Med J Aust, 2021, 215(1):16–18.e1, doi:10.5694/mja2.51124. 

4 B Shea, J Bailie, SH Dykgraaf et al., ‘Access to general practice for people with intellectual disability in Australia: a systematic scoping review’, BMC Prim Care, 2022, 23(1):306, doi:10.1186/s12875-022-01917-2.  

5 JF Levesque, MF Harris and G Russell, ‘Patient-centred access to health care: conceptualising access at the interface of health systems and populations’, Int J Equity Health, 2013, 12:18.  

6 Australian Government, Department of Health, National Roadmap for improving the health of people with intellectual disability, Department of Health website, 2021, accessed 20 February 2023. www.health.gov.au 

 

 

Lead author biography 

Dr Jodie Bailie is a Senior Research Fellow with The University of Sydney. Jodie has focused her research and evaluation efforts on understanding and improving the way our primary health care system delivers care to socially vulnerable populations. For full publication list see here: https://www.sydney.edu.au/medicine-health/about/our-people/academic-staff/jodie-bailie.html  

Twitter: @JodieBailie1 Email: jodie.bailie@sydney.edu.au  

 

Acknowledgement 

Bradley Shea undertook the scoping review as a course requirement for the Doctor of Medicine at The University of Sydney’s Faculty of Medicine and Health and Dr Jodie Bailie provided primary supervision.