Bridging healthcare gaps for people with intellectual disability

Approximately 1.8% of Australians have an Intellectual Disorder (ID), with severe or profound impairment. 

This equates to almost half a million people, and more than 300,000 of them are aged under 65 years, said Consultant Pharmacist Dr Manya Angley FPS, who addressed the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability last year. 

The healthcare challenges of this patient cohort are significant.

‘They experience high rates of physical and mental health problems, while access to appropriate healthcare is often poor,’ Dr Angley told Australian Pharmacist ahead of the 2021 International Day of People with Disability (3 December).

‘Life expectancy is lower, and [there is] a relatively high rate of potentially avoidable death.’

Specific consideration of people with ID in Australian mental health policy is also missing, Dr Angley said.

‘This is a significant exclusion, given the very high rate of mental illness [among people with ID] of up to 50%,’ she added.

Another key challenge is the high rates of medicine use and polypharmacy, said accredited and cognitive pharmacist consultant Dr Hayley Croft MPS.

‘Polypharmacy can in part result from a prescribing cascade,’ she said. 

‘Commonly encountered problems in medicine reviews for people with cognitive disability include patients receiving multiple laxative preparations from inappropriate psychotropic medicine use.’  

PRN medicine prescribing may offer appropriate therapeutic options, but could present challenges for people with ID, Dr Croft said.

This is especially so where multiple PRN medicines are prescribed, or there is limited carer understanding of the indication for these medicines. 

‘I have provided medicine reviews for patients with ID in group homes with benzodiazepine or psychotropic medicines charted PRN for agitation,’ Dr Croft told AP. 

‘However, it was difficult for support workers to determine if and when the medicine should be administered.’

Skills and service gaps

Pharmacists also do not receive specific training to understand the health and communication needs of people with ID or autism, Dr Angley said.

‘The few pharmacists who elect to work in this area of health care have to gain experience “on the job”,’ she said. 

Pharmacists might also hesitate to take on this work because service delivery to this cohort is complex and time consuming.

‘Remuneration is low relative to effort required,’ Dr Angley said. ‘This translates into compromised medicine safety.’ 

Pharmacists may also be reluctant to challenge the prescribing of specialists, even if it looks unsafe at face value, or they may lack access to the required information to confirm their suspicions. 

If a psychiatrist prescribes high doses of psychotropics in combination, for example when the patient does not have a psychiatric diagnosis, the agents are being used as chemical restraint, Dr Angley said.

‘The patient may not be having their physical health and potential adverse effects monitored as is recommended,’ she said.

Antipsychotics have cardiometabolic adverse effects and increase cardiovascular risk. They can also cause movement adverse effects, some of which may be irreversible and increase risk of osteoporosis via hyperprolactinaemia. 

‘[But] the person may not be prescribed calcium and vitamin D to optimise bone health,’ Dr Angley added. 

In this situation, as well as identifying inappropriate chemical restraint, pharmacists can highlight the need for appropriate adverse effect monitoring and recommend mitigation strategies.

Patient-centred care

Medicine reviews are a key mechanism to provide patient-centred care to people with ID and DD – whether conducted in a family home, group home or residential aged care facility.

‘Home visits allow the person to be involved in the review, but they are not constrained by the health service environment, which may pose issues with sensory overload if it is noisy, visually overstimulating or the person has to wait in a confined space for a prolonged period,’ Dr Angley said. 

Through medicine reviews, pharmacists can play a role in optimising cardiometabolic health through regular monitoring for risk factors including weight, glycaemic control, lipid studies and identifying inappropriate use of psychotropic medicines, Dr Croft added.

Pharmacists can also provide education to family members and support workers, and in some instances allied health professionals, during home visits. 

For people with disability living in supported independent living arrangements, however, Dr Croft said decisions about medicine use are affected by the protocols and procedures, risk management strategies, staff training and medicines safety culture within the organisation.

‘Pharmacists need to be aware of these additional layers of complexity when reviewing and communicating a patient’s medicine needs,’ she said.   

But as medicine experts, pharmacists can be integral to the team around people with an ID or DD, Dr Angley said. 

Together with allied health professionals and support workers, pharmacists can:

• ensure appropriate person-centred non-pharmacological interventions have been considered and trialled.
• trigger annual medicine reviews via GP or medical specialist (e.g. psychiatrist, paediatrician, or neurologist) for every client prescribed a psychotropic.
• ensure informed consent is obtained wherever possible if psychotropics are necessary.
• ensure monitoring of physical health and adverse effects, including use of a monitoring chart.
• watch for any adverse effects in patients and ask questions to determine if they are troublesome.
• encourage patients to self-report any unusual symptoms, and develop communication tools to facilitate this.
• consider underlying triggers if a patient’s behaviour has changed.
• ensure support workers understand PRN chemical restraint is a last resort.

Communication tips and resources

Pharmacists need to be aware of the communication and sensory processing difficulties many people with ID and DD have, which can be a barrier to accessing healthcare settings and services.

To facilitate communication, Dr Angley recommends a resource co-designed by the NSW Council of Intellectual Disability and people with ID. Key tips include open body language, finding common ground, speaking calmly and clearly and waiting and listening.

‘Be sensitive to the unique needs of people with a disability, and look for opportunities to tailor your contemporary knowledge and skills to the way you deliver health services,’ Dr Croft added.

The recently updated Developmental Disability Guidelines (2021) are also a good place to start for pharmacists seeking to upskill in ID care. 

The UK-based Easyhealth website has sections on specific medicines and how pharmacists can help. Another valuable resource is University of New South Wales’ Department of Developmental Disability Neuropsychiatry, ID, which includes e-learning modules for health practitioners.

‘I would also recommend pharmacists find a mentor to shadow or seek advice [from], as there is no resource that can replace on the job training,’ Dr Angley added.