Evidence of the need for patient investigation Part 2 of 2

[johnsmith]

This follows on from Evidence of the need for patient investigation Part 1 of 2:

healthunlocked.com/painconc...

My life is dived into two, pre and post road traffic accident. My losses following my road traffic accident can generate a lot of emotion. My childhood experiences can generate a lot of emotion. I find from experience I cannot talk about childhood and post road traffic experience together because I have to protect myself from emotional overload i.e. not go above my stress breakdown point. In psychiatric reports what has got written is no recollection of childhood. This is an untrue statement. There is no recognition of not being able to handle the combined emotional effects of the two series of events.

Without proper checking of the meaning of the conversation given by the patient, it is highly likely that an incorrect entry will become part of the patient's medical history. How many psychiatrists are there who devote any time to the checking of information in regard to the patient's intended meaning?

The psychiatrist makes a diagnosis on fairly incomplete information. The diagnosis is based on a series of snapshots regarding the seen and heard behaviour of the patient in particular social situations. The background knowledge of the patient concerning these situations may not be known by the psychiatrist. The diagnosis and information received could be incorrect. The psychiatrist often does not make time to inquire after the missing information. Yet there is no effective mechanism for correcting these matters. I have found from experience that I can tell the same story to a psychiatrist and to a friend. It takes me some time to recover from having told the story to the psychiatrist. Yet it takes no time to recover from telling the emotional laden story to a friend.

The body language and movement demeanour of the psychiatrist/psychologist will alter how the patient with the health disability responds to their questions. In all the psychiatric reports I have read there is no record of what the psychiatrist’s body language and/or demeanour is.

I have studied mindfulness using the guidance of Buddhist monks from the Thai Forest school. The Thai Forest Tradition is a lineage of Theravada Buddhist monasticism. What it taught in regard to human emotions matches my experience. Emotions come and as they come they go. The understanding obtained by letting emotions just be with no attachment to them is different than the psychiatric paradigm. The Thai Forest tradition teaches things are as they are. There is no wanting, there is no regret and there is no attachment. This system of thought reduces emotional issues considerably. However, it does take a period of time for it to become part of one’s thinking. My experience is that psychiatrists cannot seem to understand people who notice how their emotions come and go because of the psychiatrist’s belief that a person’s response to emotional events is fixed.

Language is an issue. When we answer a question truthfully we answer a question from a particular viewpoint. If the viewpoint in which we view a question changes we can give a very different answer to the question asked. We are being truthful in both instances. I once did a short course on questionnaire investigations at a local University. The lecturer on that course demonstrated with examples how the answer to the question they were interested in changed according to what questions preceded his question of interest. Before attending his course I had no real understanding that what questions preceded a question of interest affected the answer given to a question of interest.

We often make the mistake of assuming that everyone speaks the same language. We don’t. We at best approximate to a shared list of meanings which vary according to the different peer groups we attend. It also varies according to gender. For example checking the technical working of a piece of equipment with a male friend is straight forward it is understood that they may be a lack of understanding of certain things because of different experiences. Using the same sort of sentence construction with a female friend will result in accusations of insulting her understanding and intelligence and that women cannot understand technical things. I have had to learn about modifying my language usage. This is the result of instant feedback from the person I am speaking to. With the medical profession this instant feedback does not happen. The medical profession makes notes on what you say. After you have left the consultation they write up the notes according to the viewpoint they have at the time they are writing up the notes. This can be very different than the viewpoint at the time of the meeting they have with you. There is a tendency for some medical professionals to make notes during the meeting with the patient. After the patient has left they read the patient’s medical history and then they write up their notes with the viewpoint obtained by reading a person’s medical history. It is the nature of medical history that many issues causing pain and discomfort cannot be seen. The medical profession may not make sense of the pain and discomfort issues and can dismiss them as psychological. The medical professional, who has made notes of a meeting with a person with a health disability, will read the previous medical notes dismissal of the patient's issues as psychological and could write up their notes with the viewpoint that pain and discomfort issues presented are psychological.

In the Nature Science journal of 4th April 2019 nature.com/articles/d41586-...

it reported on Duke University having to pay the US Government $112.5 million to settle claims that fraudulent data was used in dozens of research grant applications. More than a dozen papers connected to this case have been retracted. It goes on to say: “..seeds of misconduct, although they grow in only a very few individuals, are planted in the very heart of academic biomedical sciences.”

Elsewhere it goes on to say: “Still, one thing is common: researchers’ careers depend more on publishing results with ‘impact’ than on publishing results that are correct.” A bit further on it says: “...some studies that had a big impact at first were later shown to be fraudulent, or just wrong.”

The late 1970s and early 1980s “...saw major fraud scandals involving cancer, biochemical and cardiology research, all widely covered in the media, and following what is now a too-common plot: each individual wanted impact by whatever means available.”

Further on the article says: “...Generating high-impact work is easier than doing important rigorous research, especially if it can be exaggerated, wrong or fraudulent.”

I have shortened the 4th April Article considerably in order to point out a problem that impacts on many in painconcern.

The book “Rigor Mortis How Sloppy Science Creates Worthless Cures, Crushes Hope, And Wastes Billions” by Richard Harris (ISBN: 978-0465097906) describes how some published research has been found to be unrepeatable.

“Why Most Published Research Findings Are False” by John P. A. Ioannidis was published August 30, 2005.

journals.plos.org/plosmedic...

The lack of accuracy in writing up events is far more common than people may realise. It has created many difficulties in regard to my medical notes. The problem of lack of accuracy has on occasions been denied by those in authority quite vigorously with the person raising questions sometimes being accused of having various mental disorders. Often the person in authority doing the report does not care about the accuracy of the write up or how it may be given multiple different interpretations by others.

The need for the person with the health disability having to do their own research into their own health disability is very evident. The person just does not know if all treatment options have been given, even if the treatment options being given are accurate, or if the treatment options given could cause them serious injury. When considering these issues many doctors are doing their best in very difficult circumstances. There are very few who are not. Unfortunately, there are those who do not care how a wrong treatment will affect their patients. There is a need for a partnership between doctor and patient to develop means of patient investigation for patients to check the validity of the information that is available.

[elicarol]

Very interesting I can relate to some if these findings

[johnsmith in reply to elicarol]

Thanks for the reply.

[katieoxo60]

Hello johnsmith, once again your post is long however it is very true. In respect of mental health reports they are often produced on the basis of trying to make it look like the person has a mental loss of faculty or so that persons version is not beleived. If a person has been through a terrible trauma and facts have been distauted and people they previously trusted have been found to be false, would they not be distressed and even more so when it is discovered that a proffessional has distorted the info given to come up with a diagnosis and even record the patient as being of over anxious appearance and uncooperative, patients often recent the implication that they are mentally ill when the facts show there is a cause for their distress. Telling someone they are fine when they are not does not help. However the mental health stigma remains for life and is held against the patient rather than being seen as the illness it is. Why they need family history from way back I do not know in many cases it has no bearing on the adults mental capacity, however I accept early experience often leaves a traumatic imprint on our memories. With respect your last paragraph about doctors, I am right now suffering the throws of medical mistake once again for the umpteenth time , listening to complacent doctors who don't even appologise for their mistakes, and lawyers who seem to have no power to proof duty of care. I have been told these mistakes help a learning curve, sorry but I don't feel being almost killed by GPS incorrect advice helps me cope with the emotional damage or the added physical symptom increase., and it certainly does not improve my trust in the service or make me feel less emotional. In fact right now i am most upset just typing this to you but can't ask for help from the doctor as they are the culprits of this ongoing saga. I have had three incidents alone in the past 18 months of incorrect facts causing poor treatment but the problems date back much father than that. This is not just doctors wording or different Jargon it is lack of knowledge , lack of time to know, and definately poor knowledge of the patients circumstances even to the degree of poor personal medical details recorded.Another part of this saga is what they call informed consent, if you have no details of the treatment or drugs being given then in law you cannot give informed consent and what happens can be construed as assault. In our area we have a costly poster & stamp on NHS mail that says it is OK to say sorry. Perhaps the staff who use this mail should consider being part of this project and saying sorry when they obviously were wrong. Oh and don't complain about your treatment or the problems get worse. Sorry but your post hit a nerve this morning and this time I am not going to keep quite as this is the final straw that breaks the donkeys back. Fortunately not all medical staff are none caring any ideas how you get help when your medical care has totally collapsed and help to rebuild your creditability after some people have totally destroyed it and your confidence ??????

[katieoxo60]

Ps I am well aware that medical staff work hard , I used to work for the NHS including weekends and rewards are not massive other than grateful patients reports, we want care not government controlled decisions about how standard health problems are addressed, like giving everyone over a certain age vitamin D3 even when they have normal blood results.Maybe research should be done into how much wastage there is on supposed preventative medicine that doctors seem to accept readily these days.

[johnsmith in reply to katieoxo60]

Thanks for the replies in your two posts.

I appreciate the effort you have put into the replies. Once a long time ago before "Shipman" it was me against almost everyone else. How dare I criticise a world famous institution. I must have something wrong with me. I still get this. The internet and the access of data changes things. I can now present evidence that is easily found. Whereas I once had to rely on faulty memory.

Part of the problem is that a large cohort of people think and experience things as okay. We are the small percentage who are swamped by a large percentage. As our percentage is small our problems can be covered up as if nothing wrong is present.

Despite the problems I find many medical people bury their heads in the sand as if there is nothing wrong.

healthunlocked.com/painconc...

My reply to abellemed.

I know a person who used to be a newspaper reporter. They said trying to find out what was happening in the local NHS was very difficult because of all the strange wordings for things. They had to spend a lot of their time determining what the wordings meant before they could find out what was happening. Often they could only find out what the mandarins were praising.

There was a local charity for carers. They used to have meetings where they spelled out the problems with the local NHS for carers. When the grants came up for renewal their grant was not renewed and the grant was given to another organisation.

Things were better than they once were. They are still not good enough. Hopefully, we can give the words to the next generation to improve things. However, the "safe space" campaigns where people are prevented from hearing anything upsetting is going make things difficult for those who want to improve things.

[katieoxo60]

Thank you for your reply , it is a difficuilt world we live in but some things seem to alter little especially departments financed by the peoples taxes or dare I say it , "The Government ". And yes agreed we may be in the minority because we speak up, but many others are in our minority and are fearful to speak out due to recriminations. It often turns into a personal vendetta to show who is Boss so to speak, but they are our servants they get paid from our taxes to do a proffessional job unbiasedly. Not inflict more suffering on the few. Plus we the few have to endure the torture they inflict on us on top of ours or our families medical distress. Keep up your researching into anomalies because its complaints & publicity that expose bad practice even if it can't help us maybe it might save others.

[Aligil]

Reading these posts has been interesting and leaves me greatful that my partner on the whole have not encountered or been able to tackle the problems you have experienced. Our Gp has been hugely supportive over many years and is very responsive to our thoughts and opinions. Not all medical practioners have been so good of course, but as I am willing and able to ask questions and challenge opinions that cause individual concerns, I feel confident that we are getting the best possible care. I don't want to make it sound like that's an easy thing to accomplish; there was a time I did not feel well or strong enough to take the lead and make myself heard effectively. But needing to support my partner who, along with other health issues, has Aspergers, bipolar and accute depression helped me to find my voice. Whilst very intelligent he has social and communication difficulties which can cause confusion and misunderstandings. I am quite sure many practioners still consider me to be too vocal and extremely bossy, talking on his behalf, but we now make it clear at the start of any appointment that I will be staying throughout, and that I am speaking for my husband who will make it clear to me immediately if I'm not representing him accurately. I had to interviene too many times, prior to us establishing our routine, when it was obvious to me that the Doctor or Psychiatrist had not understood something or were misinterpreting his responses. Whilst I expect the medical staff to know more than me, that is after all why I'm there, I do think it is essential that everyone has some ideas about their health issue prior to an appointment and carries out their own research to some extent along the way. Everyone should feel able to question and challenge their health practioner if they are not happy; as you've said, they are working for us, which means they shouldn't be acting against us. This of course does have to be carried out in a realistic way, ie being aware of time constraints for busy practitioners and thinking about your condition objectively. For instance I have Fibromyalgia and Arthritis which leaves me with excruciating pain and walking difficulties. I have had to acknowledge that being overweight does not help and that I need to address this in order for a knee replacement to be effective.

I have come across consultants who definately need to improve their people skills, but standing up for myself firmly and politely it has never turned into a situation as described by katieoxo69 or johnsmith. I would advise everyone to remember that medical staff are service providers, we should be respectful of them and their expertise but that doesn't mean we can't question their diagnosis or ask for a second opinion. I hope that if someone feels that they can't do it for themselves, they are able to take someone along to an appointment who would be able to advocate on their behalf. Everyone can atleast challenge and follow up anything said to them, or written about them themselves (perhaps with help) in writing afterwards even if they feel unable to hold their own at the time.

Doctors, surgeons etc are not infallible; they are human like the rest of us. If they get it wrong it can cause serious conseqences and so the sooner issues are sorted the best possible practice is the result for everyone. Having another person there to support you is a great idea. I'm never refused when with my husband but I have accompanied friends, at their request, to dental and medical appointments and having been told I should wait outside have very politely but firmly told them I am accompanying them for support.

Sorry for the long post, johnsmith's reports have me fired up...

[johnsmith in reply to Aligil]

Thank you very much for the reply. It was most useful. There is a saying in the New Testament. "It is easier to see the spec of dust in someone else's eye than the plank in your own." You have demonstrated that there is the need for someone to help someone with a long term health disability to explain things. We live with our difficulties and have adapted to our own difficulties and we cannot see how someone without our difficulties sees our difficulties.

As a supporter of your husband's difficulties you can see things as an outside observer and vocalise the things he cannot notice because he cannot see the plank. I suspect I have same problem is that when I am trying to communicate with medical professionals I cannot see the plank. This applies to many others as well.

Your reply has highlighted something very important which I am going to have to do some very serious thinking on.

[Aligil]

Thank you for your response johnsmith. I have found that I can be objective about other people's needs more easily than my own, both in a supportive way and in identifying areas of concern. It seems much less difficult to see a wider picture and ask questions of others to clarify, than to be rational about and practical for myself. I become defensive sometimes when it comes to comments about my health, especially when really I know that I am falling short in taking the best possible care of myself. In addition whilst I readily try to recognise the problems others in my life have and feel empathy for them, sometimes I get caught up in thinking that I am alone and nobody can understand my pain and obstacles due to Fibromyalgia. A good reason to log in here; a reminder that there are others out there struggling and feeling just as frustrated and indeed much worse off than I am. I wish you every success with your research and health management.

[waylay]

Agreed! I read through my medical notes a few years ago while applying for disability benefits, and discovered some very weird stuff! The worst is that I apparently suffer from alcohol-induced MH problems! Huh? I do occasionally drink unhealthily, and I definitely have (long-standing) MH problems, but my MH probs began long before a drop of alcohol ever passed my lips....

[johnsmith in reply to waylay]

Thanks for the reply. I wish I could give good answer to your comment. I can imagine the anger you had when you read what you read. MH (mental health) means all sorts of things. I suspect MH is often because we lack a skill base to handle certain things in the time scales required. Develop the skill base and the MH issues can reduce. Still working on this idea.

I had an assessment yesterday that was difficult because the answers that I had to give were in a format which I had never experienced before. I struggled right though the assessment. If the format had been slightly different to match what I have been use to the assessment would have been a lot easier.