Shameful: an under-served cohort

It is everyone’s responsibility to protect people with disability from medicine harm. We must all do more.

Disabilities, which can be impairments, activity limitations and participation restrictions that can interact with a person’s health and hinder their equal participation in society, can range from physical to cognitive and include impairment from birth or acquired through accident, ageing or illness. 

People who live with intellectual disability die younger, have moreco-morbidities and are admitted to hospital twice as much as the general population. They are entitled to just one Home Medicines Review (HMR) every 2 years, unless a specific clinical need is documented by a medical practitioner.

‘They are a really underserved cohort, which is shameful,’ Australia’s leading expert on disability medicines, Dr Manya Angley FPS (see Member Insight AP July 2022) tells AP. 

Simply accessing a doctor or a pharmacy is a significant barrier for many. 

And the taking of medicines for a person with disability can be complex. It can be impacted by issues such as tablet size, substituted brands, sensory issues (including taste and texture aversions), dysphagia or dexterity issues. For example, blister and child-resistant packaging as well as small-capped containers can present difficulties accessing medicines. 

According to the PSA report – Medicine safety: disability care,¹ the fifth in its medicine safety series which was launched last month at PSA22 – there are many barriers to safe medicine use for people with disabilities of all types. 

The seven barriers listed in the report can be present from prescribing and dispensing to administration and medication management. And the takeout message, says National President Dr Fei Sim, is that the barriers to safe medicine show  ‘a health system that is failing Australians with a disability’.

Disability medicine use

For people living with intellectual disability – up to 3% of Australia’s population – around 90% are taking medicines.^1,2 Dr Angley’s stark evidence to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability² has been widely quoted over the past 2 years, in lieu of scant Australian research and probable under-reporting of wider medicine safety problems for people living with disability. 

There also appears to be a lack of monitoring for adverse effects in people with a disability prescribed medicines such as psychotropics and opioids that have the potential for harm. And with more than 4.4 million Australians living with a disability, many with multi-morbidity, there are high rates of polypharmacy and associated problems.¹

Little data or research

The PSA report found no Australian studies on the number and nature of medicine-related problems occurring in people with disability, or that evaluated the effectiveness of HMRs or Residential Medication Management Reviews (RMMRs) in this cohort. 

Nor were Australian studies found that examined problems with medicine administration due to dysphagia for people with disability, or any that related to medicine administration problems by disability support workers, some of whom resort to crushing or opening capsules to modify oral medicines without considering the stability of the medicine. 

‘It’s very hard to do any large-scale research about medicine use in this cohort when it is not possible to link data sets,’ says Dr Angley. ‘Intellectual disability is not even coded, or routinely recorded as a diagnosis!’ Any data examined retrospectively, she says, won’t be complete and comprehensive. 

‘We cannot even tell what proportion of people with intellectual disability are prescribed antipsychotics because that information about intellectual disability is lacking.’ As well, she says, ‘we just don’t know how many medication reviews occur in this cohort. No idea – only that anecdotally it’s very low’. 

The PSA report found no Australian studies reporting the extent of prescription errors affecting people with disability. And what studies there are on medicine use focus on people with intellectual disability, rather than physical or other disabilities.

Chemical restraint

While only justified for short-term use and as a last resort for behaviours of concern, there is little data on which to reliably measure the extent of use of chemical restraint in people with intellectual disability and there are no Australian programs that focus on systematically reducing it. This is despite National Disability Insurance Scheme (NDIS) standards for medicine safety and the requirement for reporting suspected chemical restraint in NDIS participants with Behaviour Support Plans. 

Australian studies estimate that up to 55% of people with an autism spectrum disorder are prescribed psychotropic medicines.^3,5-7 Although there are requirements to record, monitor and report use of chemical restraint, according to the PSA report ‘the degree of compliance and degree of medicine safety problems remains unclear as these do not appear to be publicly reported. And while publication of this data would help guide medicine safety measures for NDIS participants, data on the prevalence of chemical restraint remains hidden. 

According to the ongoing disability royal commission, research suggests that up to 60% of people with intellectual disability are prescribed psychotropic medicines to manage behaviours of concern. This is a large number when only about 30% of this population have a diagnosis of a mental illness.²

One Victorian study of adults with intellectual disability living in residential care examined long-term use of medicines prescribed as chemical restraint. Just under 75% of 1,414 adults who were prescribed a psychotropic medicine as chemical restraint between 2008 and 2010 continued to be prescribed these medicines as chemical restraint in a follow-up period between 2013 and 2015 – some for up to 5 years.⁴

Dr Angley would like pharmacists to have a mechanism to report prescribers who continue prescribing psychotropic medicines as chemical restraint, especially when the patient clearly does not have a psychiatric diagnosis warranting their use. 

While it is ‘wonderful’ when general practitioners make HMR referrals for this vulnerable cohort, it is not so wonderful when the pharmacist’s report, chock full of suggestions and recommendations, is not considered and acted upon. 

‘Sometimes,’ she says, ‘you will get in touch with prescribers on several occasions to follow-up or request further information and they don’t reply. They might be trying to get around to it, but it seems to never happen.’ 

Figure 1 – Quick facts on people living with disability in Australia

References: PSA¹, Royal Commission²

Dr Angley believes ‘pharmacists [with concerns] need to be empowered to report potential abuse via chemical restraint’. ‘If you’ve had numerous attempts to get in touch with the GP trying to improve things and nothing happens’, she believes there needs to be a better pathway to reporting inaction. 

This is neglect, she says, particularly when adverse effects and the impact on physical health are not monitored, as this is a requirement in World Health Organization prescribing guidelines. ‘So, there is a lot of work to be done in this space and it can’t be adversarial,’ Dr Angley maintains. ‘It has to be authentically collaborative.’

Calls for help

Between 2015 and 2020 calls to the NSW Poisons Information Centre (PIC) from disability service providers increased by 111% to 11,197 calls, according to the PSA report.¹ Many were on simple medicine safety issues that could easily be resolved by a pharmacist.

In calls from disability care homes and those from carers of people with disability the most common medicines wrongly administered were psychotropic medicines. The top five medicines that were the subject of PIC calls were valproic acid, paracetamol, cholecalciferol, risperidone and quetiapine. 

On occasion, the centre’s Senior Pharmacist, Poisons Information, Genevieve Adamo (see Career Pathways APJune, p14) and a speaker at PSA22, reviews and analyses calls from disability workers to assess areas where improvements to medicine administration practices can be made to minimise risk of errors. 

For instance, this can include client photos on dosage administration aids (DAAs) and clear or different labelling for clients with multiple DAAs. 

‘The Poisons Centre provides advice on all exposures, including medication errors. Pharmacists are perfectly placed to answer medication queries from group homes and disability carers, which is the most common type of call they make,’ Ms Adamo says.

‘Enquiries about clients refusing medications, adverse effects, and drug interactions provide important insight into the client and this information should be documented by the pharmacist as part of the primary care team to assist overall medication management.’

Pharmacists can be a lifeline: Rose and her pharmacists

In Sydney’s outer western Mt Annan, pharmacist Mario Cocco MPS and his pharmacist in charge Marguerita Djodan are part of the healthcare team for Rose and her family which includes her 8-year-old son Alex. Alex is non-verbal and lives with autism, attention deficit hyperactivity disorder (ADHD) and anxiety. 

Rose has high praise for Ms Djodan who helps with Alex’s medication management needs, including providing advice on contraindications, adverse effects and swallowing difficulties (see CPD, p 44). The pharmacy will also give her script reminders and compound some medicines such as suitably flavouring his night-time melatonin ‘because they know we don’t cope when we go without’. 

With other family needs as well, Rose’s local pharmacists ‘guide us on nutritional needs, pain, fever, skin irritations, cuts and bruises and care for all of us’. 

‘Every now and then they have a general chat with time – making sure I’m OK and looking after myself. We really would be lost without them’, she says. 

Alex is just one of the many people living with disability in her geographic area that Ms Djodan and the five other pharmacists give ‘thorough, patient-centred care’, dealing with up to 1,000 prescriptions per day. There is special emphasis on phone consultations with prescribers, who tend to bulk bill and are ‘restricted in time’ with patients. 

‘We’re all working together in relaying the information to the patient or the carer who’s involved in continuing the care at home where they don’t have that practitioner or pharmacist to assist,’ says Ms Djodan. ‘We’re open from 8.30 am till 7.30pm most nights, so we have the long hours to have that “full-approach” to service.’

Physical disabilities and pharmacists

The PSA report cited examples of people living with blindness and deafness experiencing difficulty understanding health information.

This was due to either an inability to read, comprehend, a lack of Auslan translations or Braille, audio and Easy Read, as well as other access challenges. Improvements need to be tailored to an individual’s circumstances to improve medicine safety, the report stated. 

Disability is also a poorly represented area in health literacy (see Health Literacy in Practice, AP July 2022) with significant implications for policy makers as ‘the voice of this priority population is unlikely to be heard’ without appropriate advocacy, says Dr Rosie Nash, a pharmacist and Australia’s foremost researcher in children’s health literacy. ‘Continued advocacy of people with disabilities is required to ensure health systems respond to their needs and uphold their human rights,’ says Dr Nash.

So, what does one of the larger disability groups want from pharmacists? Deaf Australia CEO Jen Blyth says deaf, deafblind and hard-of-hearing people in Australia may struggle to understand pharmacists’ explanations of dosages ‘when even gesturing can be confusing when the amount of milligrams or tablets is unclear, and also the scheduling (prior, during or after eating and for how long)’. 

‘For instance, I have experienced a pharmacist using their hands to show the sign for two and then three to signify: “take two tablets three times a day” (at least I hope that was the dosage!).’ 

‘Deaf, deafblind and hard-of-hearing people who may also be carers for the ill person may also struggle to understand what side effects they should be keeping an eye out for – is a temperature normal or not? And whether there is a strict compliance needed for the medication, e.g. what happens if you don’t finish the entire antibiotics dosage?

‘We would encourage people in this industry to consider clear, easy-to-understand information, without an assumption that it is understood immediately,’ she says. This is particularly so with the challenges of deafblindness, some of which may not allow for gesturing or writing, or is compounded by a history of less access to Auslan for deaf, deafblind and hard-of-hearing people from migrant/refugee or Aboriginal or Torres Strait Islander backgrounds.

Where to from now

The PSA’s recommendations to the federal government (see Box 1) aim to improve safety across the disability sector with ‘a clear and pressing role for pharmacists to be engaged’.¹

And person-centred services are vital to ensure equity of access for people with disabilities to be supported to use their necessary medicines safely. 

Medicine safety is the responsibility of everyone, so structural changes by the government that would enable pharmacists to be providers under the NDIS and ensure that disability service providers have on-site pharmacists are key factors in making medicine use safer. 

People with disability are not second-class citizens and their invisible, often unmet needs are why, as the disability royal commission has heard, ‘there needs to be more effective integration of the health and disability sectors’ to reverse current failures.²

In March this year, the first-ever formal joint statement was published by the Aged Care Quality and Safety Commission), the NDIS Quality and Safeguards Commission and the Australian Commission on Safety and Quality in Health Care. 

In it, the three commissions agreed to work together to reduce the inappropriate use of psychotropic medicines. ‘This is great progress and very powerful,’ says Dr Angley. 

‘The statement highlights the common issues between the sectors and should resonate with all stakeholders – health, disability and consumers – and hopefully promote interdisciplinary collaborations and in turn solutions to address these issues.

Box 1 – PSA’s recommendations

References

1. Pharmaceutical Society of Australia. Medicine safety: disability care. Canberra: PSA; 2022.
2. RC into Violence, Abuse, Neglect and Exploitation of People with Disability. Opening address counsel assisting – Kate Eastman SC. Public hearing 6: psychotrophic medication, behaviour support and behaviours of concern. 2020. At: https://disability.royalcommission.gov.au/system/files/2021-10/Opening%20Address%20Counsel%20Assisting%20-%20Public%20hearing%206%2C%20Sydney.pdf
3. Cvejic RC, Arnold SRC, Foley K-R, et al. Neuropsychiatric profile and psychotropic medication use in adults with autism spectrum disorder: results from the Australian Longitudinal Study of Adults with Autism. BJPsych Open 2018;4(6):461–6. At: www.ncbi.nlm.nih.gov/pmc/articles/PMC6235990/pdf/S2056472418000649a.pdf
4. Richardson B, Webber LS, Lambrick F. Factors associated with long-term use of
restrictive interventions. J Intellect Dev Disabil 2020;45(2):159–66. [40 in psa report] 5. Birch RC, Foley K-R, Pollack A, et al. Problems managed and medications
prescribed during encounters with people with autism spectrum disorder in
Australian general practice. Autism 2018;22(8):995–1004.
6. Rasmussen L, Pratt N, Roughead E, et al. Prevalence of psychotropic medicine
use in Australian children with autism spectrum disorder: a drug utilization study
based on children enrolled in the longitudinal study of Australian children. J
Autism Dev Disord 2019;49(1):227–35.
7. Lim R, Moffat AK, Young R, et al. Use of medicines in adults with autism spectrum
disorder in Australia. J Pharm Pract Res 2021;51(5):410–4.