When it comes to accessing urgent health care when you have a chronic disability, even the UN agrees that there is much work to be done. The rates of misdiagnosis, lack of understanding and acknowledgement and incorrect treatment are high. In a world where the doctors still know everything and patients still know nothing about their own bodies (apparently), those with ongoing chronic disabilities often come worst off. And I believe a new communication system between a patient’s core team and urgent health professionals may be the solution.
After 29 years struggling with a fistful of distressing symptoms, big surgeries and fighting the hospital system, in 2012 my GP found out about a family history of Ehlers-Danlos Syndrome (EDS) – a reasonably rare genetic disorder, and diagnosed me based on exactly matching clinical symptoms and proven family history. I thought my battle for the truth was won. It wasn’t.
For the next 18 months, every time I went to get urgent care at ED, they still didn’t believe me and didn’t believe my pain, heart-rate, nausea and neurological problems were due to EDS, despite the symptoms matching perfectly – and the letter I gave them from my GP. They wanted to make a diagnosis of their own, at the expense of the actual problem.
The extents gone to to come up with their own diagnosis during that period were astounding. You can’t make this stuff up. After a period of extreme nausea, I finally gave in and went down to the ED for help. The dr ignored the diagnosis – which clearly states nausea episodes are an issue – and did test after test instead. Nothing. He came into my cubicle. ‘Can you do a urine sample please?’ Why, I asked? ‘Well, I see in your notes that you’ve had a hysterectomy, but I just want to rule out pregnancy – I need to do a pregnancy test.’ You’re kidding, right? say my two support people and I in unison…
I did the test – such a surprise!! NOT pregnant!! Wow!!!!
They also didn’t believe my GP and demanded a geneticist diagnosis – despite the fact that my type of EDS can’t be diagnosed using genetic testing yet. So for 18 long months, I still had to put up with being sent home with nothing but more judgmental and incorrect labels and diminished hope, and my GP had to put up with his skills being brought into question by letter after letter from disbelieving ED and locum doctors. That’s 18 months where communication systems and a change in attitude would have made a difference to my pain, my self-esteem and my quality of life.
Last June, solely to placate the medical profession, I was ‘officially’ diagnosed by a geneticist from Genetic Services, at my hospital’s clinic. But the confirmation letter was sent only to me, and my GP, because the hospital didn’t have the right specialist to send it to at the time. The hospital didn’t get one to file, and for a further 9 months I was told repeatedly at ED and by a neurologist that I didn’t have EDS, there was no confirmation letter etc. Eventually early this year, after huge frustration, my GP had to send the hospital a copy of that letter – so I was finally allowed to have EDS.
That phrase is really important. I was finally ALLOWED to have EDS – something I was born with – by the urgent health care system. 31 years of denial – even after a proven diagnosis. Who knows – it might not be over yet. No doubt another ED resident will pinch my skin without my permission and advise me my diagnosis must be wrong – because they only learnt 1 thing about a syndrome with many different types and groups of symptomology in med school – and don’t have the time and energy to learn. I don’t necessarily blame ED and urgent doctors for that – they are primed to deal with accidents and clear-cut emergencies. Which is why the health profession need to work together to create better outcomes in acute situations for those of us who are, well, complicated.
You walk in to a receptionist and nurse who have ‘not you again’ written all over their faces. The triage nurse scribbles a few notes as you explain things the best you can between waves of pain, the locum ED doctor starts with that scant information, doesn’t understand or know much about the syndrome acronym scribbled down with a few ???’s beside it, does a pile of unnecessary tests, orders your huge wad of notes, reads the first two pages due to time constraints, doesn’t catch the right info or gathers doubts towards the patient thanks to reading other’s disbelief from last time, and continues to do all kinds of tests. And when they can’t find anything ‘new’ wrong, they don’t fall back on your actual, diagnosed disability as the reason, they decide you must be a bit of a hypochondriac drama queen/king and discharge you. I know this isn’t just my experience, because I have heard it many times from other people with disabilities. It’s endemic.
Imagine how amazing it would be for people like me to go to a hospital that has a system which could use my NHI number to pull up not only records, but a patient summary and treatment plan, to be implemented without question – provided by the GP and diagnosing specialists – and regularly reviewed by THOSE medical professionals. No communication fails, no disbelief and ignorance, no more attempts at alternative diagnoses which impact terribly on people with disabilities seeking urgent care, especially rare ones. BLISS!!!
I want a health system where people with disabilities who need to go to ED or a urgent service all have an online, NZ-wide accessible record, with a clear instruction page from their GP and/or specialists on what the disability is, its effects on the patient, and what to treat it with when acute incidents or injuries occur. This would save the taxpayer, the hospital system, the doctors, nurses and patient’s time, money and resources.
And it’s ALMOST here, on a small scale. We need to make sure that the government doesn’t shelve it for being ‘uneconomic’ before it can be fully rolled out. At the moment this new system isn’t compatible with MedTech – the system used by most medical centres – putting it in added danger of being shelved. We can’t let that happen. We can’t let it disappear un-noticed, and we also can’t allow bad choices where money trumps quality to derail the entire idea into a privacy or glitch-filled nightmare like Novopay. This means supporting a government which is committed to these systems, and does it by implementing reliable, robust technology based on proven models. Our health and our privacy needs to be held in secure hands – by our government, by the medical profession and their supporting technological solutions. We’re dealing with life and death here.
I can’t emphasise enough how important this has the potential to be for people with disabilities. Doctors need to believe us, our diagnosis and our treatment plan, and act on that. Yes, they should check to make sure there’s nothing new wrong. But they should not judge a patient as healthy and exaggerating because they can’t find anything on top of the patient’s debilitating illness which brought them in to hospital/an urgent clinic in the first place.
It’s really difficult for people with disabilities to decide to make that trip to get urgent care. I know that I have a small chance of striking gold and getting a doctor who’s actually heard of EDS – but I also know that I am more likely to be mucked around – and I am likely to leave the hospital in tears and still in pain – somehow feeling guilty.
Six hours of doctor & nurse time. X-rays and the radiography team. Blood tests and lab staff. Taking up bed space. The records lady. Lost productivity of support people. All to find a carrot that is already dangling in our medical history, somewhere. One simple universal treatment plan page for everyone with chronic disabilities could save a LOT of taxpayer money spent on urgent & emergency staff not knowing what to do – as well as restore a lot of faith between people with disabilities and the medical system.
What do people with disabilities want? We want a health system where we are treated with respect. Where our acute health issues are just as important to the medical profession as the admired rugby league players I am watching on Sunday as I write. We want to be believed when we explain what’s going on with our bodies. We want assistance for what we have, not what people want to be wrong with us. And we want to live as fulfilled and active a life as possible, without the unnecessary anxiety and sense of helplessness that is having to go to a place where we may or may not be believed and get real assistance. Where our health outcomes are the same no matter who sees us, instead of having to buy into a lottery of outcomes depending on who is assigned our case.
Sadly Rachael you have hit the nail on the head in this article, i know similar friends and family who have faced the hospital system with a range of symptoms and been treated like a ‘leper’ and made to feel they are wasting time, while their problems don’t go away, but often fluctuate as disease progresses. Hope things improve for u now u have ur diagnosis.
hi Rachel … I to have eds hypermobility …… and sick I getting told by different organizations that I don’t qualify for funding for specialist equipment that my doctor and specialist both agree I need……. the health system told me even though I was recently diagnosed that I should of planned for my illness….. hahaha …. what a joke…. I live in a housebus and do so because I can get around inside it easiler than a house and I don’t have lawns to mow or gardens to do …… I live without at present hotwater…… without a working fire and without many other basic needs….. but I am freehold in my bus……. the system belives that if I want help then I should go back to a rented house and have the tax payer pay my rent for the next hmmmm maybe 25 or 30 years of my live as I cant work ……. due to the pain of the disabilitys….. and for those reading this it has taken me hours to type this out so no I couldn’t be a receptionist ….. have different parts of my body twisting and muscles wasting away slowly …… yet I don’t qualify for any help with funding for a ramp or a wheelchair which my doctor has asked for …… so welcome to the stuffed up system we live in with this un regonized genetic contion that we didn’t ask for …….. we were born this way ………. not due to eating wrong or smoking or any other type of illness from bad living …. but due to having a stuffed up gentic makeup/////// all we ask for is a fair deal and not to be put in the position that we feel like a lepor or feel as though we are a burden on society……… if we can still be slightly indepent isn’t that a positive thing!!!!! come on govement change the legislation ….. give those who need it a fair deal …. we all paid taxes when we were able to work …… just like those on acc……… but sorry we have a long term illness ……. we didn’t get pissed and right ourselves off………… we were born this way!!!!!! not our choice!!!!! and certainly not of our own making!!!!!
we didn’t chose this!!!!
I considered something like a national medical database that all doctors can access appropriately would be a massive boon for our health system and our people. The problem will come from a few people complaining about the government having too much information on you. Of course, these same people won’t say anything about the fact that Google and other private firms know even more about you than the government does and don’t actually need to know anything about you whereas the government does.
This is sightly off topic.. but I have a disabled sibling who was recently in hospital and nearly died due to lack of basic care (at Wellington Hospital).
We happened to see (quite by accident) his medical records on computer. Despite him being seriously physically disabled and dependent on family, we are not allowed access to his medical records – because privacy…
We were horrified to see a complete strangers name, home address, and contact number listed as his next-of-kin. No family names, no land line, none of our cell numbers… nothing about family.
Our names we’re there in the past, yet had been replaced by a woman we’ve never met, nor heard of.
Check your medical records, folks…. and if you have a vulnerable family member, find some crafty way to check their records!
Let me guess – an ex-caregiver?
A possibility, but my brother didn’t know her and there was no record of her working at the group home he lives at.
I suspect it was a vindictive employee in the hospital system…
There was blatant neglect when he went in for a simple operation, which led to a 5 week coma from infection. Nurses didn’t know the basics of how to care for a paraplegic person, such as turning him to prevent bed sores.
They didn’t feed him or give him a nutrition drip for NINE DAYS, despite our pleading and the hospital nutritionist saying she was ‘deeply concerned’ to doctors. He was literally starving and dying.
I caught out R. nurses openly celebrating at the ward reception when they found out he was going home. Not because he was “well”, but because they were awful. Lost all trust in Wellington Hospital.
Welcome to the club. In the last five years, three doctors diagnosed my Asthma/Bronchitis as all in my head. All the time my coughing was ignored, my lungs were collapsing. And the consequences is an experience between seizures and passing out.
I have been waiting since May last year for a diagnosis for chronic health problems, in the end I gave up on the public system and went private, hopefully I will have a diagnosis soon. I have given up on going to ED even when in excruciating pain because one neurologist decided I have psych issues so what I was feeling was being made up. For the specialists to actually listen to our GPs would be awesome. GPS are the ones that have to cope with us, they know so much yet are often dismissed.
A online system for our notes would be great, let’s hope it happens
The same doctors that work in the public system also work in the private system. NZ is just too small to support both and, as the US proves, we can’t afford a totally private system.
Nice piece Rachael.
A couple of questions. Do you have a medic-alert badge? I know these are seen by some as old fashioned, but hey computers do fall over. The other positive affect of the badge and why I encourage disabled to get one – is that emergency staff have a tendency to look and follow what it says without to many questions. Indeed this follows on nicely to my second question.
If these people are not your primary health provider, do you tell them your medical history? Because if you do, don’t. ED staff are there to learn the craft of medicine in/to a strict bio-medical approach. So they will not treat you as a whole person, and they will think you are (probably) lying. Sorry, but the profession has some real problems and it’s dominate ideology limits it’s ability to deal with disabled and chronic illness well. Indeed they have embedded in the physic, they can cure you if they find that one thing that needs fixing.
Good luck, I hope your management of your EDS goes forward in leaps and bounds. You have a interesting journey ahead, but know, all the people I have known with EDS (you make 3) – once they get control of their own health, they are an unstoppable force.
Centralised registers are also only as good as the doctors who enter the information. In my early 20s I got a fairly serious back injury, which could have been treated adequately at the time. Instead, I had the bad luck that the first doctor I saw with it decided I was exhibiting drug seeking behaviour, and this characterisation followed me for years. It wasn’t until about 20 years later, when my sister married a doctor and he got to see the problem first hand, that I was able to start getting treatment. What could have been fixed fairly simply took 35 years to get on top of. By then, I had terminal liver disease anyway 🙂
Something needs to change, and I wish you luck in your medical adventures.
A central health register that is accessible to all health professionals will not necessarily change that much for most with illnesses. Of course it would make it easier to exchange information, but first of all correct diagnosis and data is needed, otherwise it solves little.
And while people rightly demand that their conditions causing sickness, illness and disability are acknowledged and fairly considered and treated, what chance will there be to convince WINZ’s designated doctors, their internal Regional Health Advisors and Regional Disability Advisors, who often still question and challenge diagnosed permanent conditions, only to try and push people off certain benefits, and to make them chase for work even the fit and healthy can often not find?
A UK professor and his few colleagues, called Mansel Aylward, and MSD’s Principal Health Advisor Dr David Bratt have a dim view of most sickness and disability, claiming that most of it is based merely on “illness belief”.
They have with other influential key persons managed to even influence the general thinking within the medical profession, and an increasing number of GPs fall for their ideology, thinking it is based on “compelling evidence” and “science” (albeit much research was “sponsored” by a controversial medical and disability insurer called UNUM, having very vested interests).
So yes, better access for health services and treatment are needed, but are we getting it, while the health budget is kept tightly controlled, and while there are shortages in many areas, despite of the Minister’s propaganda?
My impression is that there is an unwillingness to accept diagnosis for certain conditions, amongst GPs and other medical professionals, as they are all being constantly reminded of the “cost” to society. Just yesterday I got more proof of how WINZ and Dr Bratt are doing all to influence GPs to make the “right” kind of diagnosis, and to avoid sending people onto benefit dependency and to stop certifying people as too sick to work.
“The role of GPs in realising the health benefits of work”:
http://www.racp.org.nz/index.cfm?objectid=E1D5428F-B1BF-2C2F-7A247F80DC4F363C
http://accforum.org/forums/index.php?/topic/15463-designated-doctors-%e2%80%93-used-by-work-and-income-some-also-used-by-acc/
Living with disability may mean being able to do some work, but the way this is being pushed now, it is done with an ulterior motive, and that is above all else cost saving. The pressures put on an increasing number of sick and disabled on benefits is unreasonable and will eventually prove to be counter productive, yes potentially seriously harmful.
Designated doctors need to be made illegal. You go to your doctor and they provide the diagnosis. People such as WINZ should then work on that diagnosis. A second opinion is probably a good idea in some cases but that should still be a doctor of your choice and not a choice of WINZ or others.
Which also needs to be illegal as it doesn’t save costs at all – it makes them larger at a later time.
DRACO T BASTARD – I appreciate your strong opinion on designated doctors, but opinions alone are little use, when they are not shared by enough and not backed up by actions, forcing authorities using them to stop doing so.
We are now moving beyond the use of designated doctors, with MSD and WINZ going to use outsourced private service providers to offer “assessments” of sick and disabled on benefits, which is new territory, and you can bet on it, that those providers will not need to provide much information under the Official Information Act, and only limited info under the Privacy Act.
http://www.odt.co.nz/news/dunedin/278489/tests-disabled-flawed-model
http://www.odt.co.nz/news/dunedin/294767/regime-still-untried
Forget CCS and their comments, as they are giving the government too much credit!
AND professional medical organisations and their colleges are now also falling for the “science” of one Mansel Aylward and his loyal supporter and follower Dr Bratt (WINZ Principal Health Advisor). The AFOEM has virtually fully adopted the UK approach to sickness and disability in regards to work ability:
http://www.racp.org.nz/index.cfm?objectid=E1D5428F-B1BF-2C2F-7A247F80DC4F363C
http://www.racp.org.nz/page/racp-faculties/australasian-faculty-of-occupational-and-environmental-medicine/realising-the-health-benefits-of-work/may-2010-video-presentation-professor-sir-mansel-aylward/
http://www.racp.org.nz/page/racp-faculties/australasian-faculty-of-occupational-and-environmental-medicine/realising-the-health-benefits-of-work/latest-news/
Not just designated doctors are now told to follow this kind of ideologically coloured “research”, ALL GPs and health professionals are expected to adopt it, and the new training by the RNZCGP has integrated some components of this already (equipping GPs with mental health training, to use those skills to assess and treat mentally ill themselves).
There is more to ponder on here, as the agencies that have been contracted to do outsourced, private assessments for WINZ (apparently 16 of them) have already been looking for staff to hire:
http://www.wisegroup.co.nz/file/position_descriptions/position-description-rhp-work-ability-assessment_feb-14.pdf
This is just the Wise Group and another one of their “entities” again, and one must remember, their “Strategic Policy Advisor” Helen Lockett also sat on the Health and Disability Panel advising MSD, Paula Bennett and the government on welfare reforms in 2011 to 2013. Talk about “conflict of interest” and getting contracts to do assessments on sick and disabled on benefits:
http://accforum.org/forums/index.php?/topic/15264-welfare-reform-the-health-and-disability-panel-msd-the-truth-behind-the-agenda/
Many here have no clue about what is already going on, and that WINZ is following the UK welfare reforms, not trusting people’s own doctor’s assessments!!!
Perhaps do some research?
Emergency departments and hospitals are set up to deal with life threatening illness. To maximize your chances of establishing a diagnosis of a rare disorder you are best served by having a long term GP you have seen multiple times for a range of complaints. I suggest in life a good GP will add several years to your life. Invest wisely. Change your GP if you’ve seen them at least a couple of times and no progress has been made by referring you on if need be, but don’t give up too easily. Doctors do not know everything about all diseases, new discoveries and knowledge are the rule not the exception in medicine. If your GP is familiar with you, they will know when something is not right and will keep looking, even when they don’t know what they are looking for or at ( they will also do their own research). Emergency departments focus is on making sure you are well enough to go home, they will not follow up your case once you are out the door, they will generally always advise you see your GP though for follow up though.
You’ve missed the entire point and run the process backwards. This blog is about people who have been diagnosed by GP’s and specialists who need urgent care due to breakthrough symptoms.
YES what you say in opening statement is so true and i have suffered brain damage memory problems from ECT at 15 years old forced on me by the government against my will I’m now 53 and have found no one willing to do any tests / brain scan to prove or disprove this its a struggle every day and no rehab/help available to help me just have to struggle along on a sickness benefit forever
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