GP’s — you now hold the power.

The below is the transcript of the speech I delivered at the #GP22 Conference for General Practice in Christchurch, 24 July 2022.

Tēnā koutou, tēnā koutou tēnā koutou katoa.

Thank you for making time for the lived experience voice to be heard in the room today. Following on from the Otago University Long Covid symposium, where we felt overwhelming support and commitment to the concept of momentum, I can stand in front of you today and subsequently provide a mixed report card.

But there have been some wins. On the first of July a quiet little update from the MOH showed that GP’s finally have been assigned SNOMED CT codes for ‘post covid syndrome’ — the first major step we all needed to officially acknowledge long covid.

You can find more on that here

As a lay person it seems sort of odd that I know the importance of this step, but it should highlight to everyone in the room here today how deep I’ve had to travel into the health system in my advocacy — at both a self and group level — with Long Covid.

Whilst many of you are capable and have — as I understand it — learned to navigate around when there is a dearth of codes for new, nuanced or thinly understood illnesses. The reality is that in a time of busy practices, that are under enormous pressure and a shocking shortage of GP’s, it’s therefore completely understandable that when the basic tools for assisting you — such as codes — are not readily in place, it can be extra challenging to undertake that first critical step needed…a diagnosis.

And yes, it does matter.

So much so that today it’s the only thing I want to speak to. You’ve already heard from Dr Anna Brooks about biomedical diagnosis and the crucial role research can play in our ongoing response to better understand and support patients.

You have been given insight into symptoms and experiences through Dr Lynne Russell and Dr Mona Jeffreys who have presented the qualitative research findings from Te Herenga Waka / Victoria University Covid Study — important data that highlights a strong need for increased support for at-risk communities and in those who simply don’t recover. Dr Sarah Rhodes has spoken to the pathways we’re trying to laydown to better support the growing long covid population and try to catch people before they fall out of society, through the cracks and / or out of the work force.

I’m often asked about the size of the group, what is the actual number of people who are suffering? Of those who are diagnosed? In fact just a few short weeks ago the MOH chief `Long Covid advisor’ reached out to ask me to quantify for them what the exact prevalance is. I’ve grown used to fielding calls from all sorts of vastly more qualified people than myself to ask for help in understanding Long Covid, be it via connecting them with those are doing the mahi, or who are interested in collaborating, or simply want to know what to say to a patient. I’ve in fact lost count of the number of times this has happened, it’s that frequent.

I appreciate the calls and the desire to connect. In addition, on the one hand I also find it wildly discombobulating and quite outrageous — particularly because I’m as far from a medical expert as you might be able to find, surely there is someone else by now who can provide this vital intel….but on the other hand I’m very aware of the absolute lack of data, lived experience and tools available to anyone wishing to offer support, and thus it’s great they’re reaching out to find some. I’d absolutely rather a doctor state ‘I don’t know the answer, but I’ll try to find out’ then send a patient packing with only their growing anxiety to keep them company. It is an incredibly lonely ordeal Long Covid, no wonder no one wants to admit they have it.

And to be clear, that is a growing issue we also face. The stigma is real, no one wants to concede - despite the myth that an avalanche of hypochondriacs are going to line up at your door hoping to get assigned the new code.

The reality is that we’ve swung so far into the fear of this now known, but still mostly unknown potential outcome, that people aren’t doing as we hoped — which was to minimise their risk of long covid — but instead are doing as human beings are want to do, and pretending it doesn’t exist.

A recent poll on twitter painted a picture of our new health reality as nearly 60% stated post covid their health is much worse off.

I’ve come to the conclusion that diagnosis is a two way street. Undoubtedly a GP or specialist confirmation can provide a patient with some assurity, steps forward or even an ongoing dialogue which forms a level of support through what will for most be a chatastrophic level change in their lifestyle. It gives them something to check progress against, to keep abreast of as new data and treatments emerge.

An official diagnosis helps a patient do so much more that access medical treatment — from speaking to their employer with confidence or seeking financial support with the knowledge that they are believed and this is actually happening to them. It helps them get whanau rallied, and align their spouses, children and parents. The positive impact of a diagnosis is extraordinary, that’s not something often heard in medicine.

At the risk of making god complex jokes, the power the GP wields in a diagnosis is significant. But I’m not telling you anything you don’t already know — you’ve likely dedicated your lives to this task, taken an oath and is often a thankless job, day in and day out, is focused on giving information back to people, based on what they simply tell you. They need to be able to feel confident to tell you and feel listened to when unable to find the words. The hard reality of self adovacy in long covid patients is that cognitive dysfunction renders the usually articulate people incapable of finding words to support their realities.

Without proper diagnostic tools for Long Covid and the reality that it presents in a myriad of sneaky, complex and non linear ways — from fatigue to brain fog, cognitive interruption, POTS, dysautonmia, joint pain, migraines, chronic pain, gut issues, rashes, shortness of breath, asthma, eye problems, gyneacological problems, heart issues, strokes, and another 79 other possible symptoms, it’s hard to keep track.

I know that as a GP there’s 15 minutes or less to wade through what could only really be described as a constellation of issues. It is of little wonder to me that many patients are walking back out the medical practice nonethewiser as to what to do about their disintegrating health and life. We know that you’re not miracle workers, you are not God and nor should you be expected to be so.

I know many patients are trying to assist you, and they are I think quite generously given the difficulties they’re experieincing, appreciating the part they can play here in helping navigate the system, and we’re doing our bit to school them on how to self advocate, how to turn up prepared, how to provide their symptom tracking information. We show them how to help you to help them.

But in reality this isn’t often met with open minds. I’ve personally tried this on a number of ocassions with my suite of specialists (at last count I had 6) and it’s fair to say that the reception to pulling out the laptop is often met with a raised eyebrow and often a thinly vieled sigh. If there was ever a fast-track to an ‘over thinking it’ diagnosis, this would likely be how to go about it.

In fact, at the Otago University long covid symposium, Dr Brian Betty himself stated that the biggest factor challenging GP’s in diagnosing Long Covid is the anxiety of presenting patients and thus discerning which is what.

And that’s an elephant not escaping from this room today.

Anxiety.

I mean, I get it. We live in a fear filled, anxiety overwhelmed world today. Thank the alogrithms, the media, the bots. But I have family members who are riddled with it and it quite literally thwarts their paths and stops them from experiencing human joy as they should. That’s real.

Around me I see anxiety every where, from parents to kids, to colleagues and fellow advocates. I’ve experienced more than my fair share too. I’ve had panic attacks — thankfully not too many of them — because they’re horrifying, traumatising, debilitating and depressing.

And whilst I’ve personally taken steps to understand my own anxiety and have a solid therapist who has helped me talk through what I can do to regain control in times where anxiety rides high, I have also learned that when anxiety is a factor, it’s not a solo performer. It’s a pathway that’s been opened by something biomechanically that is going wrong with me. In other words, I inevitably have something to be anxious about.

At the height of my long covid there were 29 symptoms oscillating and competing for constant attention, stopping me from working, living, loving, participating in life, wrecking my sleep, my sex life, my self worth and all of that can have a pretty substantial impact on mental health. But please, do get the order right, the anxiety is an outcome, not the cause. Putting it down to anxiety causes more anxiety…and worse.

Here are some choice words offered by our lived experience group, specifically the ones who walked out of their GP’s office without an official long covid diagnosis:

Invalidated, frustrated, discarded, fraudulent, disposable, gas-lit, abandoned, adrift, defeated, deflated and even betrayed…

These are not emotions that live easily in a vaccuum. Given enough space and time, they can percolate, evolve, expand and expedite into other issues…including anxiety.

We can report an increase in negative self talk, suicidal ideation, depression, a decline in self worth — the mental health toll that comes with not being believed causes anxiety. Sitting in front of a doctor unwilling to entertain or even discuss the possibility of long covid is an exercise in anxiety induction.

Being rushed to hospital with an acute symptom flare causing you to fear for your life even though there is real data to support what’s physically happening and yet still being told that ‘we think it’s anxiety’ — in spite of blood work backing up the activity, is a prophecy in fulfilment. If you speak it, anxiety will come. It doesn’t dissipate, it expands.

I’ve known from about six months into this pandemic that I sit in a position of privilege and one that I will not waste. It may not make me popular, it at times it makes me feel very vulnerable and exposed. And I can tell you, there are moments that I absolutely hate being an advocate and that this — what i’m doing right now — has become what I’m most known for.

I recently left an event early that my husband asked me to attend with him as I got totally over being asked “and how are you?” accompandied by the side head tilt. A room full of emotionally evolved individuals and yet at no point did anyone say “how’s the research into long covid going” or “are you getting any headway into long covid recognition?” or even “have you seen any increase in support for long covid?”

The level of vocalness from myself and many others on this subject should have reached every person in this room many times over, we have been clear, consistent and continous. Persistence be thy middle name. And yet when faced with 300 of my peers in a room, it still comes back to a personal question about my own health.

How are we still only at that place?

How do they still think this is something affecting only me? Why are there no other anecodotes for them to share? Why are they not more interested in the bigger picture?

Because people are not getting diagnosed. That’s it.

Over 60% of our support group have yet to receive an official diagnosis. So when we think about how the head of LC advisory for the MOH was asking me about prevalance, you know that we have more than a data problem — we have a gap in diagnosis.

You’re scientists, I know. Diagnosis needs tools, I get that. And thus, we have our circular reference, but I do sincerely hope that we can break through now that we finally have that crucial first step with these GP codes.

Next, use them!! Like the virus itself, a novel idea! But seriously, please don’t be afraid to. It seems a simple ask, but we are hearing from patients whose doctors are saying “I don’t like the term long covid”. The bad news I have for those practitioners is that world over the experts disagree with them — it exists, whether you like it or not. I can understand that it’s an umbrella term, that treating the individual symptoms is often the only pathway available for any kind of improvement, but it should not mean dismissing the terminology as a notion, or an idea that doesn’t suit your views. This is not a time for further division. It is a time for rampant uptake, over subscription if you must — but for all of the reasons I have conveyed today, the risk of non diagnosis far out weighs the risk of over frequency of assignment.

Use it. Use it. Use it. The code is our lifeline for more support, in every possible area — it is how we can mount an offence for the future to get critical help where there is dire need. The part perhaps that is often forgotten as leaders in our communities, is that your patients turn to you for not just medical advice, but wellbeing support. It starts with you.

And finally I offer this: it is not simply on the government to provide the answers to this growing problem, we must not wait. I’m not and you shouldn’t either. If we wait for that, people will die in higher numbers, and of increasingly avoidable circumstances. Be it this government or another one, world over we have seen demonstration of an acute difficulty in relying on democracy to solve a health crisis.

I believe the choices we are left with are the ones where we all get involved, we all do our bit to be community leaders, contributors and participators. We all have a role to play in forming a response, evolving it and improving on it. It requires critical analysis, rallying, vulnerability and commitment. It it thankless, confronting, tiring and daunting. Often it is overwhelming.

But when we come back to that elephant in the room, we know one thing for sure — it can only be eaten one bite at a time. So by collaborating, with open palms, minds and hearts, we can better serve each other and our communities together.

Please, start diagnosing. I urge you to.

And I thank you for your incredible service.