Inquiry into the NDIS Quality and Safeguards Commission
Submission By
Dr Jennifer Torr
Consultant Psychiatrist
MBBS, MMed(Psychiatry)
FRANZCP
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FRANZCP, Member Faculty Psychiatry of Old Age, Member Faculty of Consultation Liaison Psychiatry, Member Faculty of Adult Psychiatry
Torrqe Consultancy
402A/198 Harbour Esplanade
Docklands Vic 3008
I am a psychiatrist who has worked with people with intellectual and related disabilities since 1997. I lead a mental health service for adults with intellectual disabilities and have a private practice where all but one of my patients has an intellectual or related disability. I am also a researcher, educator and advocate.
The NDIS has provided transformative support to many people. It has also failed many people. I have borne witness to the failings of a scheme and the consequences for the person, their families, their peers, and those who provide direct support. Supporting my patients and their families in all matters regarding the NDIS has been challenging and unsustainable. With regret I have scaled back my private practice and no longer accept referrals.
I don’t know where to begin or how to summarise my serious concerns about the NDIS. I expect the issues regarding the development, approval, funding and implementation of plans are well documented. My observation is that the planning process fails to identify critical support need, planners have learnt to censure requests for supports, the approval processes lack transparency with no explanation as why certain supports are not approved, or why essential supports are ceased. This results in a lottery for plans with a few winners but mostly losers, Plans are so often manifestly inadequate, generic and not tailored to the needs and aspirations of the person, silent on serious needs including dangerous behaviours. Plans which are plans for failure. This increases the demands on families, current supports, health services and treating health practitioner. A spot audit at the specialist mental health service showed that vast majority of current patients required an unscheduled plan review. And
Next issue is the gross failures of plan implementation. There is too often a lack of “connective tissue” holding the support structures in place because of deficiencies in support coordination. It is too often families who do the work, when the Charter quite clearly states the one of aims of the NDIS is to increase the social and economic participation of carers.
I am making this submission to raise the issue of the failure of the NDIS to engage with the medical profession. I have much to say. I am writing this submission in my lunch hour. I would very much welcome the opportunity to talk about his.
I haven’t looked at the NDIS website for a few months now. But I have spent many hours, if not days, over time trawling the site for meaning information and resources for doctors who are asked to provide “letters of support”. There is no tab for doctors. Doctors are referred to in the 3rd person. Doctors are treated as a “tool” for NDIS processes. There is no understanding that “letters of support” beyond a basic list of diagnoses are unremunerated pieces of intense intellectual clinical work, which take hours to write and are written outside of consultation time, in a genuine effort to support our patients and their families and support providers. It is demoralising when these efforts make no material difference.
With regards the Safety and Quality Commission I have to ask if there has been any engagement with the medical profession.
Medication Management
The quality indicators for the management of medication practice standard require the registered NDIS provider to demonstrate that:
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Records clearly identify the medication and dosage required by each participant, including all information required to correctly identify the participant and to safely administer the medication;
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All workers responsible for administering medication understand the effects and side-effects of the medication and the steps to take in the event of an incident involving medication; and
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All medications are stored safely and securely, can be easily identified and differentiated, and are only accessed by appropriately trained workers.
This practice standard focuses on procedures required of registered NDIS providers and pertain to keeping a record of the medication and dosage, secure storage, identification of and administration of the medication, recognition of adverse effects of the medication and management of incidents involving medication.
However, the standard is silent on the interface with treating doctors and other prescribing health professionals. The Safety and Quality Commission has not mandated how registered NDIS providers are to keep a keep
Records clearly identify the medication and dosage required by each participant
One registered NDIS provider took a literal interpretation of this requirement and kept a separate record for every single prescribed medication. That is there was one form for every medication. During a consultation when I requested the treatment sheet, I was given one page. When I queried why only medication was on the form, I was given a form, one at a time, for each medication. The form was quite detailed. Each form was completed by the GP by hand, and for each form he had to fill in his name, practice address, contact details and other information. The GP was given one form, which he had to photocopy. No blank forms were brought to the appointment for me to commence a medication. There was no mechanism for me to cease a medication other than to confiscate the page and there was no provision to change the dose or to commence a new medication.
It is simply unworkable and unsafe to have multiple medications recorded on separate pieces of paper. Some other registered NDIS service providers meet this requirement by asking the GP to provide a medication summary however this is also problematic for many reasons and does not allow for in consultation changes to medications and
It has been an industry standard for group homes in Victoria to have treatment sheets, which are taken to all medical appointments. These treatment sheets collate ALL medications prescribed by ALL treating doctors and other prescribing health professionals, provide an reliable and quick means of communication between multiple treating doctors, allow for changes in dose, cessation of medications and commencement of new treatments, and provide a record of medications changes over time.
I have created my own treatment sheet, with my practice logo. Whenever a patient presents with a creative but unworkable record, or a computer-generated medication summary then I provide a treatment sheet with all medications. I sign off on medications I have prescribed and then ask that the general practitioner check, change if necessary, and sign off the remaining medications. Some organisations have not been comfortable having my branded treatment sheet and have implemented their own treatment sheets.
Restrictive Practices
I understand and support the need to monitor and reduce the use of restrictive practices. This requires trained workforces in the disability and health sectors and well design, funded, and implemented NDIS plans. There is a cost which is applied to a person’s NDIS plan for the development and implementation of behaviour support plans and complying with the reporting requirements via a portal which is apparently laborious and time consuming. All data must be re-entered whenever there is a dose change which requires all data be re-entered every time the dose a restrictive medication is change. This includes medications with no changes to dosage. Perhaps the portal could be improved.
Recently I have been asked to by service providers for a “letter” identifying which prescribed medications are restrictive. A letter to “whom it may concern”. I know why I am being asked, but that is because I work across the sectors. Once again there is no communication from the NDIS with medication profession, no forms, nothing. It is difficult to not feel disrespected and expected to provide yet another unpaid service for the NDIS. It is cost shifting and takes advantage of doctors doing what is best for their patients at the expense of their practice and of themselves. It is also a bewildering task because it is not defined. It is vague. Again, I don’t know what the NDIS – in this case the Safety and Quality Commission – wants from doctors. I am also acutely conscious of the stress this causes direct support workers who are under pressure to provide this information and to devise behaviour support plans but a deadline. They are even more stressed if I say that all of the medications are restrictive by definition because I have no idea why they have been prescribed. For a new patient on excessive psychotropic polypharmacy it is resource intensive to gather the information to construct a clinical and medication history. This can take weeks of work. That is just the beginning of the task. Sometimes it can take years to assess, diagnose, and restructure treatments. This situation arises when medications have been added to contain aggressive and destructive behaviours which are usually a manifestation of an undiagnosed mental illness – most often mania. It is like a giant game of clinical Jenga – you never know the withdrawal of which medication will bring everything crashing down.
There has been a recent upswing in referrals seeking medication reviews. I suspect that this is in relation to the implementation of the restrictive practice framework and if so I expect the reason the person is being referred is so that I can see them for a “291” and divine why the mediations are prescribed. Another reason why I am seeing an upswing in requests for “letters” and in new referrals is that apparently the Commission is not accepting diagnoses provided by general practitioners. Australian psychiatrists report the they have received limited if any training, have limited expertise in making diagnoses of mental illnesses, and prescribe psychotropics generically to manage symptoms not to treat diagnosed conditions. There have been many gains over the last 2 decades but there is a such a long way to go.
But I have deeper concerns about the framework, and it is complicated. I would like to see this framework revised and a reworking of how medications are determined to be a restrictive practice or not.
To keep it simple not all prescribed medications deemed to be restrictive by the Commission are restrictive. And sometimes psychotropic medications prescribed to a person with a psychotic or bipolar disorder can be prescribed with intent that is restrictive. I consider a restrictive practice as something that is done to someone to control them rather than to treat them. But the framework includes treatments are restrictive practices. It is problematic to define a prescription of a medication as a restrictive practice by the Commission’s definition when in actual fact the prescription of the medication is specifically to treat a diagnosed condition or to alleviate distress. For example: The Commission states that the prescription of clonidine for anxiety is “off label”. I have provided a written explanation that I prescribed clonidine for one patient to treat debilitating anxiety and as an adjunctive treatment for bipolar disorder and provided references to some of the published evidence. It was still deemed as being a restrictive practice. I have a problem with this. First of all because is in incorrect. It is an implied criticism of considered clinical practice (which is guaranteed to alienate doctors) and it is very unhelpful when the family fret over each and every medication resulting in treatment delays and high demands on overstretched service. With regards to defining any off-label use of a medication as restrictive no matter the reasons for prescribing, could capture valproate, carbamazepine, lamotrigine and chlorpromazine.
There is an inherent pressure for medications classified as restrictive to be ceased, and if not carefully managed this can and has caused serious harm to the person and others. There is a real risk that people who do not have medication qualifications and who cannot provide the required clinical follow up will seek to have medications ceased. This has happened in the past and it must not happen in the future. I will be presenting evidence on this at the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.
Furthermore, the restrictive practice framework does not capture the restrictive prescribing which is cast as accepted treatment for a diagnosed condition but is excessive. It also does not address the possibility of undiagnosed, misdiagnosed and therefore untreated, or mistreated conditions. Addressing the provision of expert and effective mental health care to people with intellectual and related disabilities is another universe of challenges. However, the restrictive practices framework should not be parallel to and disconnected from health and mental health if we are serious about the well-being of people with disabilities.
Many doctors in the field have long argued that all psychotropic medications be overseen because of the long standing systemic issues resulting in so many people with intellectual and related disabilities and mental ill health not having their illnesses diagnosed and correctly treated. This would capture the extent of psychotropic prescription to this population and my hope is that this might lead to long overdue systemic reforms.
My view is that there should be a standing committee of medical experts to work with the Safety and Quality Commission on these issues and the develop a constructive framework for the interface with health and mental health and to improve the health, well-being and lives of people with intellectual and related disabilities
Yours sincerely
Dr Jennifer Torr
MBBS, MMed(Psychiatry)
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FRANZCP, Member Faculty Psychiatry of Old Age, Member Faculty of Consultation Liaison Psychiatry, Member Faculty of Adult Psychiatry