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Many vulnerable people are excluded from the support they need by administrative red tape that leaves them overwhelmed and disempowered, writes Dr Louise Stone.
As a general practitioner, I recently saw a young man who was sleeping rough. He’s had a tough life. Like 50% of the people in this country who left school around year 10, he doesn’t have the literacy to manage everyday life. I asked him if he was receiving payments from Centrelink. “Nah”, he said, “I tried to get Centrelink, but when I went in there, they told me to use the computer. I can’t, so I left”. He went back a few years later with his dad, but “they gave me this form and it was 24 pages. We chucked it out”. I asked him how they manage to cope without support. “We beg”, he said wryly.
What is administrative harm?
As a general practitioner, I see administrative harm all the time. The National Disability Insurance Scheme (NDIS), My Aged Care, Centrelink, Veteran’s Affairs, Workcover and other systems are optimised for those who can read in English, have access to digital devices, have at least some control over their own paperwork and have the confidence to be very, very persistent. Unsurprisingly, the poorest, sickest, most marginalised, and least white tend to miss out.
You need trust to access care. Entering your sensitive data into a faceless database requires a degree of faith in administrative systems and government which may well be misplaced. If you were a victim of Robodebt, or your data have been compromised in one of the many hacking incidents in recent years, or you come from a country with a corrupt administration, you are unlikely to have such faith. My patients who live with domestic violence are also understandably reluctant to use systems that may identify them to others.
There are an army of good people and organisations around Australia trying to help people manage administrative harms. Advocates, volunteer financial advisors, youth workers, non-government organisations, and many, many others work with Australia’s most vulnerable people to ensure they get the support they need. But it’s not enough.
The cost of red tape to providers, consumers and carers
Recently, I helped a woman with early dementia get through the paperwork she needed when she had to leave her job. She’s one of the lucky ones, with two intelligent and capable kids. By the time we secured her a disability support pension, NDIS, and the specialist diagnosis she needed to access both, I had spent five hours with her and her family. Just on administrative needs.
I even had to spend 20 minutes finding a nurse practitioner to sign off so she could get a subsidy for her diabetes equipment. In a staggering misunderstanding of my clinical skills and 14 years of training, the government has decided I don’t know enough to fill in a subsidy form for the National Diabetes Services Scheme (NDSS). A nurse practitioner can, so I had to waste 20 minutes finding one willing to sign. When we questioned a representative of the NDSS as to why general practitioners shouldn’t fill out a subsidy form, he replied “because insulin is a dangerous drug”. I’m sure the nurse practitioner knows this, but so do I.
Families waste much more time. They learn endless acronyms, search through layers of online documents, and have to find appropriate evidence to justify each question on the mountains of forms they are required to complete. Often the patients feel useless, guilty, overwhelmed, and, despite our best efforts to include them in every decision, deeply disempowered.
When I started in general practice, we did all this with a district nurse and, where necessary, a social worker. It was more humane, and I suspect it was significantly cheaper for the taxpayer.
Duct tape jobs
In 2013, anthropologist David Graeber published an article that highlighted the harms associated with pointless work. He called for a cultural shift, valuing creative and caring work over empty tasks, and introduced one form of pointless labour he calls “duct taping”.
Duct tapers fix problems that should not exist. If the system were better organised, then it would not need to taped together to make it work. Duct tape jobs in general practice include rewriting referrals because hospitals have complex and opaque referral systems that general practitioners cannot navigate, responding to endless requests for information that has already been provided to multiple organisations, consulting with carers and consumers to help them navigate increasingly complex pathways, and addressing therapeutic “dead ends”, when patients are repeatedly referred and rejected.
General practitioners are asked to supply increasing volumes of paperwork to enable patients to get the care they need. Frequently, the paperwork needs to be supplemented by phone calls, emails and other methods of advocacy to ensure the patient is accepted into the care they obviously deserve. Sometimes, we need to “sell” patients, calling in personal favours, professional connections, and attractive narratives to persuade others to care for our patients. This form of begging is demoralising and should be unnecessary.
Duct taping from general practitioners is the reason many patients don’t “fall through the cracks” of the health care system. However, duct taping is expensive for general practitioners, who are rarely paid for this form of labour. It also causes moral injury, because highly trained and intelligent health professionals deeply resent the pointlessness of the tasks involved.
The role of tape in workforce attrition
Red tape and duct tape strangle general practitioners, not only using up time, but also using up emotional resources. It is, frankly, soul-destroying to waste time on paperwork that doesn’t need to exist.
In the past few years, the federal government has conducted multiple general practice audits that consume time and energy. The behavioural economists say this is to reduce “low value care”. Perhaps it is time we applied the same lens to administrative harms and started reducing “low value red tape”.
We general practitioners currently spend an extraordinary amount of time on unpaid paperwork or other administrative tasks. Most of it seems pointless. If we spent even half that time seeing patients, we could have 16 million more appointments available to patients per year. I doubt governments are saving that much time and money through all the administrative processes they impose, given how much these processes cost. During Robodebt, I remember the epidemic of mental illness caused by that particular administrative harm. I’m sure the money saved didn’t begin to compensate for the cost to the people targeted and to the health care system who tried to care for them.
It is time governments were held accountable for the administrative harm they cause. No-one should have to beg because they can’t read a form.
Dr Louise Stone is a Canberra GP with clinical, research, teaching and policy expertise in mental health. She is an associate professor in the Social Foundations of Medicine group, Australian National University Medical School.
The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.
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How many medical consultations in general practice involve the GP performing a social work role, and also dealing with patients’ extreme distress, when patients present on multiple occasions requiring further Centrelink forms to be filled in over the years with slight permutations. NSWDepartment of Housing also requires GPs to repeatedly fill in application forms for patients as the patients previous application forms expire quickly if the Department has not acted on them within a certain timeframe. This substantial administrative load reduces GPs availability for other health care provision to the population. It is a bureaucratic harm.
Great article, and so true. I have always felt that I can help people out who find paperwork daunting, by agreeing to fill in such forms within a consultation: but now that means that my consultations are full of paperwork. Medicare is paying me to read between the lines of housing department applications, repeat script applications for ADHD drugs for patients I hardly see ( the psychologist does the work), complexities of Carer allowance or pension, not to mention NDIS application paperwork to support Allied health requests which are made by perfectly sensible practitioners. Did you know that having an ACAT package denies you community nursing in Sydney? that took hours of forms to discover , undertaken by our nurses and me. Such a waste of GP time, for very little value it seems.
So what do we do?
I couldn’t agree more with this article.
So much wasted time and effort that could be spent doing something useful
Just gets worse by the day
Paperwork Prisoners
Death by a thousand paper cuts
This is possibly one of the most important articles of the year. Thank you for highlighting this issue.
I wonder if we used the technical jargon of human factors engineering and safety system, this could give an academic and technical pushback against the officious rule-junkie administrators.
Common sense can, and should be, be officially coded
“No, sorry, we can’t implement that extra administrative burden, because it breaks every rule of human factors and psychological science. It is not safe.”
I’m a specialist medical practitioner and academic. Despite my system literacy, I have, at times, found it prohibitively overwhelming, dealing with paper work and red tape when it comes to my kids who have had chronic health problems.
For people who have learning difficulties or from another culture or have little system literacy, “filling out this and this and this and this form” can seem like standing at the foot of Mount Everest
There is a special place in hell for those that created such a system to deter people from even applying for services due to their complexity and an impossible level of numeracy literacy and IT knowledge.. Drove me to tears working in a community where patients were largely elderly and CALD and living alone. So many couldn’t get to see specialists that they needed to see at a centre 850km away – murder for not having our being able to use smart phones which were the only means used to communicate by the tertiary hospital. Requests for more information, pre anaesthetic questionnaires etc – all missed and no follow up through a human interphase. I really believe the system was directly responsible for earthly deterioration and death for many in such communities.
What an excellent article! Thank you Louise for highlighting this increasing burden. The creation of red tape is deliberate to stop access to services and supports, and shifts the work burden to the consumer/patient and away from the provider. Thank goodness for clinicians like you who support our most vulnerable to navigate this!
I remember applying for Parenting Payment and CCS over 10 years ago. Despite 2 degrees and 7 years of tertiary education, it took me 2 full days on a screen (with a newborn), 2 in-person visits to Centrelink and 2 hours on hold on the phone. Imagine doing this when you’re about to run out of fuel or phone credit. Then imagine doing it again, every few weeks.
I absolutely believe that some of the improvements to the mental health of the poorest patients that I saw during COVID lockdowns were directly as a result of increased NewStart, suspension of reporting/ mutual obligations and a moratorium on rental evictions. Shows you that as a society we have the solutions to help people accessible within days, we just don’t want to.
Thank you Louise for a great article. Agony to watch people falling through the gaps due to paperwork and also as you point out, a massive waste of time for health professionals .
Thank you Louise, I was homeless at 20 after my mother died. There were so many systemic harms, just trying to acquire youth allowance. This is not automatically granted if you are under 25, because you are not considered independent, unless you have earnt above a threshold amount – which is hard to do when you are poor.
what can we do about Centrelink in that It is deeply demoralizing dismissive, and extremely difficult to navigate, as you say on behalf of someone else. There are signs in thd centrelink office all over the walls that say, “we do not tolerate violence”, but from my point of view the whole presentation of the Centrelink office is passive,-aggressive, emanating, subdued violence.
Politicians keep the unemployment rate down by creating pointless bureaucratic jobs, the occupants of which find purpose through creating red tape, so harming productivity or worse as in this article. Given this political context, the prognosis is poor, despite the federal government’s purported focus on the nation’s stagnant productivity.
It would be useful to ensure that this article is forwarded to all major banks who make next to no provision for those with poor memory regarding passwords, slow or non-existent internet access and / or poor telephony coverage. It is not just G.P.s who are being “strangled”. Members of the community less advantaged than the executive levels of large financial institutions and their IT departments similarly find their figurative chariot wheels bogged in sand. How is it that an ex-Labor premier, Anna Bligh, heads the banking industry’s lobbying machine but does not seem particularly interested in the burden that security and other regulations places on the less well supported elements of our society?
During more than 40 years in general practice I only ever saw these problems getting worse. Who will hold governments accountable for the administrative harm they cause?
Agree completely. The Queensland work cover form is so confusing. Hopefully something will come out of the recent review but I am not holding my breath.
As a GP near retirement the paperwork is getting to me and will be the reason I leave. The triple authentication for QScript the many steps to get into Proda to do an authority script. It all gets to you in the end.
Thank you Louise. You have put into words the unease and lack of clarity that I feel when trying to make a plan for a person with multiple (physical, emotional, social, and practical) needs.
Totally agree Louise.
I experienced this myself recently trying to apply for Commonwealth Health Care card after retiring..
It needs a computer ,multiple documents uploaded and alot of time .I was rejected the first time and had to reapply after I received my Australian citizenship certificate.
I even went into Centrelink to get some help but that was only partially successful.
I cant imagine how alot of people cope with the bureaucracy ….