It’s been a while but here’s some new stuff (dare I say n3#s in Australia)
Don’t get too excited, it’s not guidelines developed in consultation with the lived experience of diabetes, it’s health professional developed continuously contemporary guidelines. Most clinical guidelines are out of date before they are disseminated, by the time everybody involved has commented, revised, argued about, watered down, etc etc a guideline the technology and treatment paradigms have changed. In an attempt to overcome this, a thing called “living guidelines have been developed”.
The diabetes living guidelines are a collaboration between the Australian Diabetes Society (ADS), Diabetes Australia (DA), the Australian Diabetes Educators Association and the Australasian Paediatric Endocrine Group (APEG), with representation from The Royal Australian College of General Practitioners (RACGP), the Australian Department of Health and Cochrane Australia. I do wonder how much input people with diabetes have had.
The living guideline for type 1 diabetes is “Medical Device Technology for the Management of Type 1 Diabetes”
In many ways the guidelines seem to state the obvious that we’ve been saying within the community of people with type 1, there are lots of benefits to pumps and CGM but there are downsides and expense, so it should be your choice. I guess these guidelines are more for those out of date practitioners who would prevent their patients accessing technology, if you’re stuck with one or more of these, then the guidelines can assist in pressing your case.
The Australian Health Department’s Covid vaccine eligibility checker indicates that people with diabetes will be in stage 1B of the vaccine roll out, expected to start in mid-March. The Health Department website has a lot of information about preparing for the vaccine and the roll outs. Price Hike for CGM
I understand the cost of dex sensors has jumped markedly in Australia, what’s been your experience. Yet again it seems a disappointing outcome from pharma, surely more realistic pricing would increase useage and achieve economies of scale.
As you’d know from my frenzied tweeting last week and my last blog post about tech I was at the Australasian Diabetes Congress #19ADC last week. Rather than do a highlights post, I’ve decided to do some topic specific posts on what I learned at the Congress. Coming soon is research about effectiveness of technology in type 1, what’s new in food and diabetes and where’s the voice of the people with D?
Although there are no game-changers yet in terms of the cure I was encouraged to hear about some more small steps in piecing together the puzzle of type 1 diabetes.
Delaying the Onset of Type 1
These results were announced earlier this year I think but are worth reiterating: *A single two-week treatment with teplizumab delayed the onset of T1D in non-diabetic relatives who were at very high risk for development of clinical T1D. *The delay in the median time to diabetes was 2 years. *43% of teplizumab treated subjects developed T1D as compared with 72% of those receiving placebo. *Teplizumab can be safely administered in children and adults who are at risk for t1D *Subgroups of individuals identified by characteristics at screening, may have particularly robust responses to teplizumab. This is the first trial to show that immune therepy can be used to delay T1D.
The next step is discovering the biomarkers that will identify those people most likely to respond, seeing if repeated dosing is efficacious whether teplizumab can be combined with other agents with complimentary mechanisms of action to increase the efficacy towards delaying or preventing. If you are interested in getting involved in screening visit https://type1screen.org
Islet Cell Transplants
Islet cell transplants are accepted as a viable treatment for severe hypo unawareness. A lack of islet cells available for transplant plus the need for immunosuppression means this isnt ever going to be a treatment for more than a handful of people with severe hypo unawareness a year.
One of the big problems that hinders greater success in the population of people eligible for islet cell transplants is the immune response that takes place in the liver in the first few days after transplantation, apparantly a lot of the islet cells die. I first blogged about an Aussie approach to fixing this when it was touted in 2016 and it is encouraging to see that what was reported there, really is going to turn into a human trial. Synthetic skin, developed for treating burns victims is a potentially great means of transplanting islet cells, “The transplantation site is intra-cutanous in a neo dermis, and NOT subcutaneous”. The model has been used in large animals (piggies) and human clinical trials will begin in early 2020. This has the potential to improve the success of islet cell transplants in curing severe hypoglyceamia. Great to see another example of ground breaking research coming from Australia, this time, the University of Adelaide.
The Problem with Curing Mice
All those jokes about there’s a lot that can be done if you’re a mouse with diabetes, are sort of true. I found one of the presentations that highlighted some of the difficulties with the mouse model of diabetes useful, in short, mouse models are unlikely to translate to people, at least without an enormous number of intermediary steps: (sorry for poor quality image).
Disclaimer, Diabetes Australia organised a media pass for me to attend the Congress as part of their “DA Peoples Voice” initiative. All views expressed are mine and do not in anyway represent Diabetes Australia. Thank-you to DA and the ADS-ADEA for their support of this initiative.
I was fortunate enough to be part of the #DAPeoplesVoice for 2019, this means DA organises a media pass for us to attend the Australian Diabetes Congress, as it’s in my home town this year, I’m organising my own transport and accommodation.
I know everyone’s always eager to hear about new tech, so the big announcement is the launch of the Solo Pump from Roche. Here’s what I know so far:
It’s a pump patch and it’s much smaller than either the Omnipod or the Cellnovo (neither of which are available in Australia as of today’s date).
Before you get too excited the Solo isn’t available in Australia yet either, it isn’t listed on the TGA yet and negotiations re the funding model aren’t complete yet either. The Roche rep I spoke to indicated they are very hopeful of a November TGA listing.
The pump detaches from the body easily, leaving a pump holder attached to the skin. The pump is quite different from the ones we’re currently used to in terms of its pump and consumables set-up and so the funding model will be different too. The shelf life of the different components varies, as I understand it the pump life is 1 year, therefore, your PHI would be paying approximately $2k/year rather than the $7-10k every 4 to 5 years. Downsides it seems to me is that the battery and reservoir are one item and the battery ‘dies’ after 4 days, so I don’t think you can extend the life of the reservoir. I tend to reuse reservoirs a lot a habit I picked up before these consumables were on the NDSS, so I wouldn’t like being restricted to forced replacement every 4 days. You must use the inserter to insert the pump-I rather like the fact that the Medtronic sets don’t need an inserter. An inserter is another bit of kit you have to carry around. You can do a basic bolus with buttons on the actual pump, but mainly you need to carry the Roche meter & remote control to control the pump-again this is all extra kit, but given most of use don’t travel without a glucometer then it’s probably not that big a deal. The pump doesn’t talk to any CGM and unlike, say Ypsomed who indicate they are in discussions to try to get this functionality, Roche give no indication that this is likely.
I know some people really dislike the notion of pumps with tubing, for them I suspect the Solo will be a really exciting addition to the choices we have available for pumping in Australia.
As you may be aware, this product has been developed by Eli Lilly and is being sold in the US. This really IS a gamechanger, in my opinion for people with hypo unawareness, particularly for children at school. Administration of Glucogen via injection has been really, really difficult to implement for first aid officers/teachers etc. This seems like such a great solution. It will not be available in Australia until mid-2020, it is hoped that it could be sold over the counter, at a price comparable to the current product. I not
Stay tuned for more info, I’m totally fascinated by findings around diet and the gut microbiome-seriously it’s exciting, huge potential to overthrow everything we ‘know’ about diet. Tomorrow there’s a session on gut microbiome and type 1 diabetes, I’ve heard it’s linked with the autoimmune response.
We’re still struggling with language around ‘compliance’ at conferences, trying to feel our way between inclusion and tokenism and advocate for our voices to be heard. Then there’s a thing called “The Big Drop” a hypo simulator. The softies at the stand had gone home by the time I made a beeline to investigate the trivialisation of hypoglycemia but there’s always tomorrow…
Lots more interesting stuff, including some really revolutionary stuff on diet coming soon.
Last week I attended the The Association of Regulatory and Clinical Scientists to the Australian Pharmaceutical Industry (ARCS) conference. The conference is a professional development opportunity for scientists (be they doctors, nurses, pharmacists, researcher scientists or software developers) who work in the pharmaceutical or medical device industry-including in the regulatory sphere.
The theme of the conference was “Putting patients at the centre of healthcare”, and it was heartening to see ARCS starting to walk the talk by awarding 17 consumer scholarships to cover 17 non-professionals with an interest in this area for full conference attendance. Thanks to ARCS for this opportunity and for making us so welcome-the ‘Consumer Lounge’ in the trade display hall was a really nice touch too.
Some random observations:
In general there was a real openness to consumer perspectives but this is still very new territory. Patient-centricity, patient engagement and empowerment are all the buzz but they are used in many different ways to mean wildly different things. The presenter from Google Cloud waxed lyrical about empowering patients by providing an App that would tell you that you hadn’t walked 3 miles that day and/or that you ate a muffin at 1pm. N’ah surveillance isn’t my idea of empowerment, thanks all the same. This slide looks ethically worrying to me:
The level of intrusion and sheer volume of information that can be amassed about you sounds like a recipe for discrimination and profiteering without adequate safeguards.
In general the technology with us or ‘almost’ with us is outpacing the ethical frameworks. Do you know where and how the medical data from your diabetes apps is stored and treated?It was pointed out that the business model for most app developers were built around the sale of data.
It was encouraging to hear from PBS representatives that they are very interested in hearing patient stories and about the qualitative impact of new drugs on patients’ lives. It was noted that the platform for input didn’t really encourage this. I perceive that both government and industry are recognising ‘patient’ power, I’m not sure that us patients are as smart about using that power as we could be.
I saw a number of slides like the one below, the patient in the centre of a ring of connected ‘players’, no doubt trying to embody the ‘putting the patient at the centre theme of the conference but it’s worrying that the patient is adrift whilst everyone else is connected and the arrow is only going one way-the patient is being acted upon. A telling visual representation of our lack of agency. I’d like to see us as ‘patients’ step up and change this, it’s our health, how do we make sure that we can impact upon academia, industry and the healthcare system. I think it’s a united we stand divided we fall thing so how DO we get a more unified voice?
Fortunately the ‘patients’/consumers at ARCS were neither passive nor lacking agency, what was particularly great was the response to our presence and input at this conference
“So good to see many of you at the conference. My name is Shanny and I am the CEO of ARCS Australia. I think having patients, consumers and carers at the conference was awesome and added a whole new dimension – I so loved how you stood up and asked questions, challenged folk and made your presence felt. Very proud of you and very proud of ARCS members.“
In this brave new world of big data and personalised medicine there are lots of opportunities and threats, here’s to more opportunities for us to work together as patients and with the other stakeholders, whilst reminding them that there should be ‘nothing for us without us’!
Is it wrong to steal a loaf of bread to feed your starving family?
The diabetes world knows that people are travelling to Canada and Mexico to buy insulin. We know that people have died in the United States from a lack of insulin. We know that the prices of all but the most basic and ‘peaky’ biosimilars are unaffordable for many, many working Americans.
“Last month, the powerful Senate Finance Committee asked the three dominant insulin makers detailed questions about the drugs’ price increases. The price for one vial of Eli Lilly’s Humalog surged from $35 in 2001 to $234 in 2015. From 2013 to this year, Novo Nordisk’s Novolog jumped from $289 to $540 and Sanofi’s Lantus from $244 to $431, according to a committee letter.”
Let those costs sink in for a minute. For those readers without diabetes, type 1 diabetics will require not just one of those insulins but two-a short acting and a long acting. So if the cost of 1 vial Humalog is $234 and 1 vial of Lantus (the long acting insulin) is $431. Say if you use 2 vials of each per month (many, many people would require more than 2 vials per month), that’s a cost of $1,330 a month just to stay alive, that’s $16,000 a year before you pay for your rent, your food, your blood testing supplies, your children’s clothes, transport and heating costs.
A security guard in the US, has just been charged with 1 count of theft, for stealing insulin. The average wage in the US for a security guard is, $12.66/hour which equates to $26,000 a year, before tax, if you work a 40 hour week You need to find $16,000 just to live before you pay your taxes, your rent, your electricity, your food and other diabetes supplies and doctors bills.
The disingenuous news reporting on this is telling, it’s so very ‘let them eat cake’. Fox media says:
While the county attorney’s office confirms the suspect is diabetic, they say it remains unclear why he stole more than $4,300 worth of insulin.
How outrageous is the implication that he stole some wildly excessive amount of insulin, as though it wasn’t just for his personal use. The amount he stole is three months worth of life.
Why is it that the price of insulin has skyrocketed in the last decade? In short the answer is because it can.
It’s not just one insulin, it’s all of them, the lock step in which the oligopoly of insulin manufacturers move is uncanny, it almost looks like they’er colluding.
When your wage is $26,000 is it criminal to steal insulin-the substance that keeps you alive?
Who’s the bigger criminal? The Security Guard who has stolen 3 months supply of a substance that he needs, for the rest of his life. A substance that is priced way beyond his means to afford it?
Or is it the US government who fails to protect its citizens from price gouging? Is it the fat cats of pharmaceutical companies who are not just generating profits for sustainability and research, no they are exploiting human beings who rely on their product to stay alive in order to boost their bonuses.
Is it the citizenry of a democratic country who put up with this and vote against universal healthcare?
One thing I know in my heart, the security guard who took some insulin isn’t the real criminal in this scenario.
Thank God, I live in Australia, otherwise I could be in the same situation as that security God. There but for the grace of God, go any of us. You might not have diabetes now but who knows when you might fall ill and be beholden to the capitalist system for your very life. #insulin4all #universalhealthcare
National Diabetes Week (July 14-20) is almost upon us and the theme is “early detection saves lives”. Diabetes Australia have a webpage devoted to It’s about Time and I’m glad to see this positive campaign again.
My plea though is that amongst early detection and screening and pre-diabetes, the general public and particularly the medical profession don’t get confused about the urgency of a type 1 diabetes diagnosis.
Undiagnosed type 1 diabetes kills and does so quickly, particularly in children. Most of the children who are diagnosed in DKA don’t have a family history and they don’t have the typical risk factors that come to mind when ‘diabetes’ is mentioned.
PLEASE if your child(or yourself or anyone) is sick, think about the four Ts, Thirsty, tired, toilet (frequently) and thinner. If you have any of these ask your GP for a diabetes test.
Doctors PLEASE think about type 1 diabetes, PLEASE do a 1 minute test for glucose AND Ketones in your office. If high glucose and ketones are present DO NOT SEND FOR BLOOD TESTS, DO NOT SEND FOR OGTT, contact your hospital IMMEDIATELY. Parents if your doctor is still waiting for tests etc, don’t be put off, get in the car and take your kid to emergency, if they are becoming or are unresponsive call an ambulance.
NO PARENT SHOULD HAVE TO SUFFER THIS. NO CHILD SHOULD DIE OR SUFFER IRREVERSIBLE BRAIN INJURY FROM A TREATABLE CONDITION
Sadly too many people are being diagnosed way too late with type 1 diabetes, mostly they have been diagnosed with ‘flu’ or ‘virus’ by a doctor weeks before the condition becomes life threatening. I still don’t know why we can’t do more education with GPs on this issue, as I blogged about a few years ago. I don’t understand why it is so hard for GPs to diagnose type 1.
I too have been surprised to see the longest lines at conferences being for the on-the-spot A1c checks. Perhaps all these people are wanting a free diabetes screening because they’re worried about their diabetes status-it would be charitable to assume that. I have my suspicions though, just like Renza’s neighbour who feels it’s about feeling good about their own number whilst judging yours.
I think this checking of A1c is a way in which professionals strengthen their psychological defences against the illness and vulnerability they are surrounded with. I can imagine the need to reassure yourself that you’re different from those who are being discussed at conferences, what better way than by proving you are not ‘diabetic’?
GP Dr Clare Gerada argues that during their training doctors come to believe that they are special and entirely different from patients: patients become ill but doctors do not. This belief defends them psychologically against their close proximity to sickness and suffering. However, feelings of difference can slip into feelings of superiority; …
Charlotte Williamson British Journal of General Practice 2019; 69 (680): 150-151
I suspect that the A1c check isn’t playing at diabetes, it’s a psychological prop for healthcare professionals. Who am I to judge them for that, but here’s hoping they are led to more empathy and care for diabetes distress, rather than feelings of judgemental superiority about their intact beta cells.
I find hypo simulators more problematic. Diabetes is not a theme park experience. Even if a simulator could come anywhere near the shakes, the extreme hunger, the sweats of a normal hypo let alone the visual impairment and cognitive disfunction of a severe, should they? To what end? There is copious evidence (and isn’t medicine all about being evidence based) of the harmful effects of, and people’s death as a result of hypoglycaemia, why would a very poor imitation of a few hypo symptoms have any impact on professionals? More likely give them a false sense of confidence that they actually understand hypos when they have zero idea.
As for wearing pumps or testing blood sugars or injecting saline, none of these come anywhere near simulating what it is like to live with diabetes. I am reminded of reading Alan Marshall’s excellent autobiographical “I Can Jump Puddles”. Marshall was crippled by polio and permanently relied on crutches-amongst other problems, he was frustrated when people told him they knew what it was like because they had to use crutches for 6 weeks when they broke their leg. It’s nothing like it ok!
Not all attempts to simulate diabetes, however, are necessarily completely useless. Decades ago before there were diabetes communities online, I was at a friend’s extended family gathering. Like all good ethnic families food was piled onto my plate and I was being pressed to “eat, eat”. When I told the GP cousin I hadn’t met before that I had met my carb quota, she said “oh, you have type 1 diabetes, that is really hard. They did a study and GPs couldn’t manage to do all the things diabetics are supposed to do.”
This was the first time somebody acknowledged the degree of difficulty in diabetes and I was grateful. A good diabetes simulator although it can never do justice to the emotional and psychological impact of diabetes could potentially help make doctors aware of the burden of diabetes in terms of the additional tasks that are just piled upon us with no consideration of quality of life or just capacity to do so many things on top of a busy life.
That said, until you have it or you have cared for a child with it (the issues are somewhat different but no less intense) do not ever presume that you know what it’s like because you’ve played around the edges of some diabetes tasks for a while.
When doctors resist changes to policies or practices that would support patients’ autonomy or voice, they act oppressively. Explanations from patient activists and doctors’ own understanding can lift that oppression, but often only after patients have suffered unnecessarily.
Williamson, C. The Emancipation of Patients: a theory whose time has come. British Journal of General Practice, March 2019. p150
A British Medical Journal article proposes that doctors often act in a ways that oppress patients, and improving things for patients should be understood as emancipation. When I think about this in relation to living with diabetes, I’m like ‘hell yes” why didn’t I see this before? I think we have understood nd we have been quietly fighting for emancipation for a long time, the internet has sped up the underground railway and now the time has come, as the article says for this concept to take hold.
One of the ways in which doctors hold onto the power to oppress is, the article claims by resistance to change. Williamson highlights the issue of unrestricted parental visiting in all children’s wards in the UK. This change in policy took 30 years to implement despite consistent advocacy from parents, evidence from research and the direct evidence of distress witnessed by professionals every time small children were separated from their parents.
This is not dissimilar to the current state of diabetes inpatient care. There is good evidence that inpatient care of diabetics, particularly those with type 1, around the developed world is very poor. Insulin errors in dose and timing, high rates of dka developing in hospital are attested to by people with diabetes, research (see the UK National inpatient with diabetes audit) and by diabetologists. Why is it that patients who manage their own diabetes 24/7, 365 days a year must be routinely denied access to the tools they need to manage their care whilst fully compus mentus in hospital. Sometimes people are too sick or under the influence of anaesthesia or pain relief to manage their own diabetes but that is usually only the case for short periods of time during a hospital stay.
I posit that this interference with self-management, the lack of generally accepted guidelines and recommendations for self-management is all about power.
Individual professionals are probably not sitting in their offices maniacally laughing about having their inexperienced (diabetically speaking) hands around the lives of diabetics but the systemic resistance to diabetes self-management in hospitals sure seems oppressive and something I’d certainly like to be emancipated from. We need to start asking why self-management isn’t the norm in hospitals and we need to agitate for change. It shouldn’t be up to every individual with diabetes to fight for their care when they’re in hospital. Where are our advocacy organisations? Probably too fearful of pushback and been infiltrated by doctors who act within these organisations to resist change that redistributes power.
It’s always been a battle for us to access the tools and equipment we need. Take home blood glucose monitoring as an example. Doctors were opposed to people testing their own blood sugar levels, patients couldn’t buy meters-even if they were prepared to shell out for the hospital priced ones until patients started taking things into their own hands. In my case, my first meter was built by the dad of another type 1 kid in his garage (he supplied affordable meters for kids at the Children’s Hospital in Sydney).
I suspect that the resistance to the #wearenotwaiting movement in diabetes, that is DIY closed loop pumps is similar. This movement is very threatening to doctors who generally don’t understand the technology and see a dimunition in their input. There are some great doctors who are onboard and encourage patients because of the good results they’re seeing.
It is a strange thing that being engaged with our care results in such resistance.
To people with type 1 who feel obliged to post blaming, shaming and just plain scary pictures on social media: (I’m not going to share the social media image in question as I don’t want to perpetuate the awful message).
1.I know you’re scared of complications, we all are but you need to learn how to cope with the fear. Sticking your head in the sand and saying bad things only happen to people who eat sugar is ignorant and it’s not going to help you.
2.Diabetes is difficult, being simplistic doesn’t help anyone. The person I know with the worst a1c, never ate cake, never ate ice cream, never had dessert, never drank juice in the whole four years I knew her at university, she exercised too and was underweight. She had an eating disorder and hypos terrified her, she was also depressed about complications. A1c does not simply equate to sugar consumption, that’s a ridiculous notion and it should not be perpetuated.
3.Risk reduction does not eliminate complications. People with low a1cs develop complications and those with high a1cs don’t. Before about 1980 ‘tight’ control was impossible, what would be considered alarmingly elevated sugars was pretty great control back then. Not everyone developed complications.
4.Have some compassion on people who, for a variety of reasons, may be suffering complications. It is disgusting that, to allay your own fears, you are deliberately promoting a false message and shaming people.
5.As people with diabetes we can do better than this. Do it for yourself, face your fears even if you can’t do it for the sake of accuracy and compassion for others.
There was a rule on social media that simply said “don’t be a dick” in this case I think I’ll say don’t be a TypeOneShit.Tweet
Just read a great article from the British Journal of General Practice (shout-out to @ipump1 for sharing it with me) and Charlotte Williamson for writing it-kudos. It’s about the emancipation of patients from the oppression of doctors and as the subheading of the article says, it’s “a theory whose time has come”.
Firstly, it acknowledges the high ideals and high levels of competency inherent in being a medical practitioner. The article does, however, draw attention to societal and professional factors that inhibit a just distribution of power. Doctors’ training, beliefs and methods of operation serve to put patients in the position of being a weaker group subject to the (sometimes) unjust use of power by doctors as the dominant, stronger group.
“What doctors see as benign beliefs and actions, patients may see as putting them at an unjust disadvantage.”
The theory is certainly timely for me as I’ve pondered patient engagement, activism and autonomy even more than usual lately. Williamson’s theory makes a lot of sense. She outlines three examples of the way in which what is generally accepted in medicine can actually enforce the will of the powerful (the doctors) upon the weaker group (the patients). These are doctors’ sense of being different and special (C’mon you know that’s true), secrecy and resistance to change. I thought I could include all three issues in one blog but realise that would make it too long so I’m going to do one at a time.
Doctors’ Sense of Being Special
General Practitioner, Dr Clare Gerada posits that during their training doctors come to believe they are special and quite different from patients, this protects them psychologically from constant exposure to illness and death but feelings of difference morph quickly into feelings of superiority that in turn leads to oppressive behaviours. Williamson says “In medicine feelings of superiority sometimes glimmer through in, for example, the way some doctors speak patronisingly to patients, disregard what they say, or assign patient-speakers at conferences the worst spots.” (Williamson,C.)
Conferences are an interesting example methinks. A couple of illustrations spring to mind. Recently I read Renza Scibilia’s experiences of presenting at medical conferences. Check the whole blog post out it’s a good read, but essentially a dietitian stood up and told her ‘in no uncertain terms’ that she was “irresponsible” for talking about a piece of research on diabulimia and more than one endocrinologist criticising her and saying she needed to be ‘reined in’ when she related her personal story of using an open source app to create a closed loop pump.
An endocrinologist (whose name I’m withholding because this blog is about the system, not him as an individual) chastised me for my blog post, He declared my blog ‘unhelpful’ and ‘inappropriate’-perhaps it was to him but he wasn’t the intended audience. He’s entitled to his opinion and to put it on social media but he wants to deny me the same courtesy. He also falsely claimed the post was a personal attack, that’s a bit more problematic:
Note the assumption that he has the right to make universal statements about helpfulness and appropriateness and the ‘othering’. I am implicitly excluded from the right to make comment because I am not a ‘peer’. When I and others pointed out that it was a critique of practice and the claim that it was a personal attack was false given that neither the the presenter nor the hospital were named and there was nothing ‘personal’ about criticising research methodology and the publicly stated practices of a public hospital, he changed his tac to telling me I shouldn’t be ’emotive’.
This defensiveness, as though health service providers are beyond criticism and it is outrageously inappropriate to critique their publicly presented practices and research is hugely oppressive and that’s why it only every works one way. Professionals criticise patients openly and publicly but when a patient criticises a professional, it is portrayed as a heinous attack by the holders of power. This handily silences patients’ concerns from ever being raised. Patients are criticised and attempts made to silence them for presenting matters of significance at conferences and when practices that are harmful to patients are presented as though they’re best practice (discharging patients from publicly funded care, for reasons that can’t be articulated for example) there are vigorous attempts by some professionals to silence any criticism. I would put money on the fact that not one professional gave feedback to the public hospital that kicks people out, nor did one professional take to task those practitioners who criticised Renza’s presentations. It’s not the criticism that gets me, it’s the double standard.
All of this conspires to keep patients in their place, subject to the decisions and power of the professionals. Life is surely much easier when you can do as you like without having to worry about what other (lesser) stakeholders might be concerned about.
I’ll consider the use of secrecy and resistance to change in future blogs, these too contribute to maintenance of existing power structures within health. I hope that together we can think about ways in which we can emancipate ourselves from these constraints and ways of thinking which, as Williamson says hinder ‘medicine from being as humane as doctors’ talents and good motives should ensure.’
*Yes, my criticism of a presentation at a conference last year was scathing but not particularly more so than standing up at a session and calling the presenter ‘irresponsible’ nor telling a person’s boss that she needs reining in, despite the fact there was a very clear disclaimer that presenter was speaking of their personal experience and not on behalf of the organisation for which they work/ed. I note that nobody has actually attempted to defend the validity of the research or the practices that I criticised (they don’t have to, but if I’m to be castigated for criticism it should be about invalid or unsubstantiated criticism, not tone) butI believe the hospital continues on its merry way with kicking patients out.
You will find the article to which I refer here:
Williamson, C. The Emancipation of Patients: a theory whose time has come. British Journal of General Practice, March 2019. p150