‘The most extreme case of the misuse of psychotropic medication that I have ever seen.’

Pharmacists, and accredited pharmacists in particular, need to be empowered to report inappropriate prescribing of psychotropics in people with intellectual disability if they perceive it to be abuse and/or neglect, says one expert

Pharmacist Dr Manya Angley has given evidence to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, highlighting the abuse she has seen via chemical restraint.

Academic and consultant pharmacist Dr Angley’s statement to the Commission says that in her observations conducting medication reviews and from her research, psychotropic medicines are “often prescribed as ‘chemical restraint’ for people with intellectual disability”.

These medicines most commonly include benzodiazepines and antipsychotics.

“When psychotropic medication is used to manage behaviour, it may be classed as chemical restraint,” she wrote.

Dr Angley said that there is evidence to suggest that people with cognitive disability experience more mental health conditions than the general populace, but they face barriers to accessing consistent and timely mental health care, and need access to regular monitoring and review to watch for the adverse reactions and atypical responses to psychotropic medications they may experience.

However, “From my experience as a consultant pharmacist, I observe that comprehensive monitoring of all parameters of concern… only occurs infrequently.”

Dr Angley said in her statement that because of the cap on HMRs and the low remuneration they attract, “I believe many accredited pharmacists shy away from conducting HMRs for people with intellectual disability and service delivery for this cohort is limited”.

She said she believes that about 100 of the HMRs and 25 of the RMMRs she has conducted have been for people with intellectual disability… and chemical restraint featured heavily in them.

“The majority of the people with intellectual disability for whom I provided medication reviews have been prescribed psychotropic medication for purposes other than the treatment of a diagnosed mental health condition, which from the information available to me I understand would be defined as chemical restraint,” she warned.

She gave three deidentified cases studies of patients; one had no documented psychotic illness but was prescribed an antipsychotic – not TGA-approved for management of behaviour in intellectual disability – at an average maintenance dose for psychosis as recommended in the AMH 2020, as well as two anticonvulsants concurrently, and were experiencing adverse effects though there was no evidence available of monitoring of their medication.

This patient had been on an antipsychotic since the age of four, and when giving evidence Dr Angley said that there is evidence “that that shows that anti‑psychotics in people with dementia increases the risk of TIA, stroke and death”. 

“It also shows they increase falls, they increase a risk of pneumonia, and I expect if we could have that data to hand, we would find at least those same problems in people with intellectual disability. 

“And, of course, people with intellectual disability, young people commenced on anti‑psychotics become old people with intellectual disability, and so why would we expect anything different?

“And the earlier these medications are prescribed in people, the longer they’re on them.  When they’re prescribed early, they have a lot of living to do, and there is a lot of harm that can be made.”

The case Dr Angley cited as Patient Two was “the most extreme case of the misuse of psychotropic medication that I have ever seen”.

Patient Two was on two antipsychotics to manage challenging behaviour, each at a dosage two to three times higher than the maximum dosage indicated for the treatment of psychosis.

“They were also prescribed a third antipsychotic on a PRN basis which, if taken at the maximum prescribed dose, would equate to three times the maximum daily dose indicated and approved for psychosis.”

Patient Two was also on an anticonvulsant and an “extremely high” dose of benzodiazepine on a PRN basis for medical procedures such as blood sampling.

“His support workers told me that he was not improving in any way with respect to his behaviour; in fact, his behaviour was worsening despite the escalating dose,” Dr Angley said when giving evidence to the Commission.

“He was also prescribed an anti‑cholinergic agent called Benztropine which is intended to be prescribed when required, but he was prescribed that continually, and that agent can mask the development of these abnormal movement side effects that can occur that can become irreversible. And they’re like Parkinsonian type movement disorders, and they are very distressing and disturbing. And they have a lot of stigma associated with them.

“So—he was also prescribed a benzodiazepine in very high doses, but that was just for sedation for medical procedures. 

“But the issue here was that he was prescribed two regular anti‑psychotics, a third one on a when‑required basis, and none of it was working. 

“So his mother had been told there was only one psychiatrist who went to that regional area, and that was the only option, and so my role was really to identify chemical restraint and to facilitate a pathway for him to see another psychiatrist who was employed by a government agency, and for that to occur in a timely manner and to be fully assessed by the psychiatrist and then embark on a de‑prescribing program.”

When asked if she would consider the treatment of this patient to be abuse, she said that it was.

Patient Three had an acquired brain injury and intellectual disability and was on four times the dose of risperidone recommended for the management of challenging behaviours in intellectual disability.

They were experiencing adverse effects including hyperglycaemia and akathisia – and were not being appropriately monitored.

Dr Angley said the common themes she had observed included inappropriate use and overuse of chemical restraint, and informed consent from the patient, family or substitute decision-maker before psychotropics were prescribed.

Multiple antipsychotics were being used at once and there was “overuse and inappropriate use” of PRN medication as chemical restraint by support workers, due to a general lack of understanding of why they were prescribed.

Prescribing of anticonvulsants to manage behaviour, when the evidence base was lacking, was a common theme, she said.

“There is a dire need to develop similar standards for intellectual disability care,” Dr Angley told the Commission.

“There are now strict requirements for obtaining consent regarding prescribing chemical restraint in aged care residents.

“The same should exist in service providers and facilities delivering care and support to people with intellectual disability.”

She recommended that HMRs or RMMRs should be made mandatory each year for people with intellectual disability who are prescribed antipsychotic mediation.

Remuneration for these services should be amended to include a loading for patients with intellectual disability, she said, due to the complexity and increased time pharmacists need to complete them.

There should be remuneration for up to five follow-ups, she said.

She also recommended the monthly cap on the number of HMRs an accredited pharmacist can complete should be increased to include an unlimited number for people with intellectual disability.

“Pharmacists/pharmacies should be able to obtain a NDIS provider number to provide medication-related services to complement the HMR and RMMR programs,” she recommended.

“Pharmacists should be integral to the range of models of care for people with intellectual disability.”

“The changes to the HMR and RMMR program rules in April 2020, which in addition to GPs, now allow referrals to be made by medical specialists including psychiatrists, paediatricians, and neurologists, are advantageous for people with intellectual disability,” Dr Angley told the AJP.

“Also, the two funded follow-ups will provide opportunities for pharmacists to support implementation of a deprescribing plan, and monitoring of adverse effects and physical health in people with intellectual disability prescribed antipsychotics.”

Royal Commission Chair Ronald Sackville AO QC has stressed the need for a better approach around
the use of psychotropic medication for people with cognitive disability.

On the last day of the hearing he told the ABC that, “there is plainly a problem with the overuse
of psychotropic drugs’.

He said there was also a problem with “the extent of training amongst health professionals and the broader disability support services”.

“We have no option but to look at these matters in an attempt to come up with a better approach, including how we can improve understanding of the causes of behaviour and not attribute responsibility or fault to the person that is engaged in that behaviour.”

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