This post covers difficulties primarily on antidepressants that medicines can cause to people in schools or universities who end up unable to study or do course-work, as well as the difficulties people can have trying to get off medicines, a process that can be pretty disabling.
The materials linked to this post are being put in your hands to run an experiment and hopefully feedback to all of us. Based on feedback it may become clear just what certificates are needed and if we need different documents for different countries. If we get the formula right, the materials can be extended to include mood-stabiizers, antipsychotics, antibiotics (like doxycycline and fluoroquinolones) and other drugs.
Withdrawal Certificates for Disability
Several people badly disabled by drugs, especially antidepressants, suffering from protracted withdrawal or PSSD and related problems are in such a poor state that work is close to impossible. But they have to survive. So the question of disability or insurance payments comes on their radar – just as it might for anyone incapacitated by any other illness.
Dependence on antidepressants or any prescribed drug is however an iatrogenic illness. This makes things different. It would be good to hear from anyone who has managed to get a payment for a specifically drug induced illness – its a different iatrogenic ballgame if a surgeon has chopped off the wrong leg.
Its desperate thinking but some people have turned to RxISK hoping we can help. We can’t do much but there are two RxISK Certificates Withdrawal Certificate 1 and Withdrawal Certificate 2, which you can download. Read on to see what help if any these might provide.
For anyone hoping to apply for financial or other support in managing the disability that exposure to antidepressants can cause, a report by a specialist confirming that you are dependent on and perhaps effectively unable to stop your medicines may not be a great deal of help.
It might be of minimal help if the specialist actually met you, ideally on several occasions and had access to all your medical records.
The key person is your family doctor. If, for instance, your primary care (family doctor) record does not mention the problem or perhaps casts it in terms of a somatising disorder or more generally arising from factors other than your antidepressant, then specialist input will be of no value, unless the specialist knows you well and has done so over time.
The first step in applying for disability or any other support must lie in acquiring your medical records, to which you have a right, and reviewing these to see what they say.
If your doctor has recently converted to the possibility that your antidepressant is causing problems, it may need a letter from her/him entered into the medical record to indicate that prior views in the record appear to be wrong and s/he is now of the view that there is a problem linked to treatment and has been for some time.
This is where the RxISK Certificates comes in. They state there can be a problem. They don’t state you have a problem. One is more hard-hitting than the other. You can chose, which one to take to your Family Doctor and see how they respond. They will likely respond best, if at all, to Withdrawal Certificate 2.
Another ‘game’ might be to take both and ask which of these works best for them. This gets the message of the hard-hitting (C1) one in under the radar – most will choose C2.
You might have to wait some time, till they come around. You can’t push on the door or it will stick shut.
Even then, it will be uphill.
The assessment for disability or other claim lies in the hands of assessors employed by an insurance company or other payor rather than in the hands of a family doctor or specialist. These assessors are slow to concede there is a problem that warrants a disability payment. They are likely to make suggestions about further treatment – many of which are almost certain to make the problem worse, giving you a terribly difficult judgement call – do you go along with the suggestion or not?
The chances of success in getting a disability or insurance payment are pretty low but it is still worth applying for disability support in that this is definitely a way to raise the profile of these issues with both medicine and politicians. With time the disability is more likely to be recognized and it may stimulate more research on finding an answer.
The alternative is doing nothing which lets the system roll on. It has begun to label people disabled by antidepressants as Treatment Resistant Depression and steer them toward Medically Assisted Dying.
If any family doctor wants to make contact, about the above, they can email david.healy@rxisk.org.
If you have an account of your experiences either with your Family Doctor or with some hired gun assessor that you want to share – such as their fool proof way to get off antidepressants or their absolute certainty you were born with an SSRI deficiency, please share through comments.
What would be most helpful is any ideas about how to shape an approach so that it has a better chance of working – we may need different approaches for different countries and different situations.
People seeking disability don’t need to specify the cause and it may be politically easier to accept your doctors saying you’re depressed and have neuropathic pain (even if all caused by Efexor). Anyone seeking workers compensation needs to specify a cause – such as a failed back surgery for an injury sustained at work. This is where failed antidepressant treatment for burnout caused by bad management practices might start to get interesting.
Legal Action for Dependence
Jim Gottstein of PsychRights has recently had an article published on the possibility of anyone suffering from Antidepressant Dependence taking a legal action for this. Jim’s article focusses on the problems.
Most plaintiff law firms will only be interested in something like this where there are thousands of claimants. Baum-Hedlund in the United States took a successful action paroxetine dependence case in 2004-2005. Its not clear that anyone has done much since.
Taking Political Action
One of the contributors to RxISK who hopefully will have a post soon, found a quite extraordinary development. In New York seven years ago, there was a serious effort to get the major hazards of antidepressants noted as part of an informed consent process. Somewhere along the line, this sensible bill S2243a got written out of history. It would be good to find out what happened.
The people who are most likely to get a Bill or something like it (that won’t backfire on them) to happen are the pharmaceutical industry as part an effort to kill the SSRIs and replace them with something that will cost a lot more.
And all of our efforts will be used as evidence that everyone should avoid those nasty twentieth century, last millennium drugs. Heads they win, tails we lose. Still it is worth exploring avenues like this.
Educational Certificates
The disabilities that many drugs can cause don’t just affect people in work or unable to work. They affect students both at school and university. The problems are not confined to antidepressants or withdrawal. Over 200 drugs can cause pretty bad agitation, up to suicidal or psychotic levels, with people ending up on a cocktail of drugs as a result, none of which are likely help their cognitive function. Memory and concentration may be impaired, with people reporting Brain Fog or Chemo Brain, not just on the cocktail but after they stop.
Again as with the Withdrawal Certificates, the Educational Certificate here states in principle that many drugs can compromise educational performance. But it will be down to a Family Doctor or other doctor who knows you, has access to all your records and can interview you and perhaps family members to work out whether these problems that can happen in principle have in fact happened to you.
annie says
This Bill, is so on the right-track.
PURPOSE OR GENERAL IDEA OF BILL:
To require an enhanced level of informed consent before psychotropic medication can be prescribed for patients residing in nursing homes or adult care facilities.
CURRENT
https://www.nysenate.gov/legislation/bills/2021/S2103
It is a Bill we should have in the UK and to cover all weak areas of psychotropic medication prescribing to all children and adults, wherever they are in the ‘system’.
Very pertinent article from Jim Gottstein who knows his business – The Zyprexa Papers
I wish I could have had this information in this great piece by RxISK with accompanying ‘Certificates’.
There I was in Glasgow in front of a lawyer who knew nothing about drug prescribing, but I was there, in front of someone who could have changed the course of history, who could have made a precedent, who had the power and we both knew it. So why did she insist on a GP, not known to me, but obviously known to her, to be the one to make or break my assertions about my treatment by various doctors who unilaterally made the wrong calls.
At the heart of my case was a psychiatrist, invited to my home, when I was happily walking my dog on the beach in front of our house. I knew this whole thing was a bad idea, why didn’t I just send him away. In many ways, it was because I was too polite. If he had made the effort to come and see me, then I should hear him out. “Are you suicidal?”.
Anyway –
Because this psychiatrist palmed me off to the GP and walked away from the whole thing, it was only evident in my medical records, that he had in fact given written warnings in a letter to the surgery. This letter was submerged in my medical records, which I might add, my lawyer said were in such a total state of disarray that she had to spend hours putting all the paperwork in some semblance of order which took her and her assistants hours of work.
So the GP goes cold turkey from Seroxat, ignores his letter, gives me more and more medications and without a care in the world sends me to back to his hospital where he breaks every rule in the book.and she subsequently breaks every rule in the book.
Two years of complete and utter madness.
“It must be awful for your mother watching you fall apart” quips the medical receptionist.
The GP broke all rules of doctor patient relationship.
Familiarity of a week long stay in her Island house, me walking her dogs for her, me having coffees in her village accommodation and her calling the ‘Doctor Union’ when my formal complaint arrived at the surgery.
My one and only email to her “You were there for two years why won’t you help me?”
I think it was not unreasonable for me to send this. No reply.
Then her boss in Nova Scotia calling me out with his phone call.
Anyway –
This post is quite possibly one of the most important to assist the drug wreck and if you go along with the way it is designed you may find yourself getting a little more help than is currently on the table and able to breath a little freer that good advice is worth its weight in gold.
It will be wonderful to hear about success stories for the formula and how others have beaten the system … and that there aren’t too many currants in the bun…
Dee says
Thank you for another great post.
Like many perhaps, I was reluctant to finally have to apply for Disability.
It was long after my injuries and impairments had impeded my ability to work, a decade after Seroxat had damaged me so badly and irreparably that I had been unable to teach. Also a matter of pride and self-delusion that I would succeed at finding another way to earn.
The application process was so difficult (especially with by then less severe akathisia, suspected “fibromyalgia”, severe “IBS” etc. and with crippling cognitive impairments), I ended up writing (badly) to a then local TD. Also at least twenty pages in support of an appeal to have iatrogenic disabilities recognised after my application was initially rejected.
This was also sent to the Irish Health Minister given that we may expect hundreds of thousands, if not millions, to follow a similar clinical picture via an awful trajectory. Many perfectly well and in no need of drug treatment before initial prescription.
In the end, I was “awarded” it. But, for (drumroll…) depression. And likely to get that nutty woman off their backs.
The ideas presented, and where the medical system and State have worse than failed millions, may also really help prevent those afflicted young from incurring further damage (or even death).
They may help prescribers to be more mindful and to better recognise the difference between the symptoms they are trained to look for (or for MUS symptoms…) and for signs or symptoms of what may be iatrogenic neurobiological damage or injury.
I suspect the gas-lighting (intended or unintended), frustration, and often the hostility, towards people suffering from iatrogenic horrors and/or disabilities (no one more frustrated than them) compounds the illness, worsens symptom and disability management, and so further increases suicide risk.
A lot of preventable damage may be reduced and a lot of lives may be saved if practitioners
may be prepared to undertake a little more paperwork.
Not only will it also make them better doctors, it will reduce the likelihood that a small minority of iatrogenically disabled patients or their families may be so aggrieved that they may end up sending them legal paperwork (or worse!) in the future.
I hope some more good ideas come of this. I’m all out, still hard to “think” or to type at all.
As for any progress regarding in Ireland, and though there are no doubt some great doctors, I think we’d have better luck in China.
susanne says
Are there any hints of what may come next? re above ‘The people who are most likely to get a Bill or something like it (that won’t backfire on them) to happen are the pharmaceutical industry as part an effort to kill the SSRIs and replace them with something that will cost a lot more.’
– So people can be warned ,prepared as early as possible to check them out, Maybe some pre-emptive action might be possible before too many people are harmed by whatever comes next
S says
Imagine one of the most helpful things would be to have a doctor who knows you well, is willing to listen and is receptive to what you’re saying. I don’t really have this at the moment as see a different GP each time but I think these could be really important conversations if they’re had with the right person. A certificate feels like the right kind of direction.
Spoke to a GP this morning. Talked about sporadic fatigue/pain/neuropathy post Seroxat. Very frustrating conversation. Explained about protracted withdrawal (most problems started post stopping- no other cause found) She doesn’t see a link-told me half life of drug means it out of my system etc. Also said fatigue can be attributed to a number of factors – anxiety/psychological. I explained mood wise I’m okay- she asked if I was working/did I live alone? I felt these questions were leading to a mood type conclusion so did my best to explain its physical and not anxiety.
She will send me for another round of bloods- usual stuff, iron/thyroid and also glandular fever?(Explained I had this at uni- didnt think you could get it again but she will check) She said lots of people have these symptoms we don’t always know reasons.. maybe rather than needing to know the cause symptom management is best/learning to live with…
The bit I found most infuriating is how she said post pills difficult to know what’s original symptoms! She said I was obviously prescribed them for a reason initially. I told her my original symptom was anxiety, not what I’m presenting with now. When I saw a Neurologist a few years back he wrote symptoms of fatigue were likely related to changing Serotonin levels. I did ask if I could send her some info, she said I could but she couldn’t promise she would read…I thought I would send Adele Framers paper and something from RxISK on protracted withdrawal. Hard to know what she might make of a certificate but am willing to forward anything that might make a difference.
Its absolutely crazy we are having to think about disability payments, at the very least I would hope it sparks a conversation. I guess a large part of it is showing it to the right person? What percentage of GP’s are themselves on AD’s? Noticed it says in the certificate about possibly not doing such a good job if on treatment- pilots, GPs…Is that going to touch a nerve if read by a doctor themselves on treatment?! How many GP’s have partners/friends/patients who take these drugs without problems? This is where it gets difficult.
susanne says
This FOI was made in 2013. It would be useful to get a copy of the latest WCA Handbook . to see what changes have been made to it –
To: Miss Lloyd Williamson C/O request-166659-7685b8b9@whatdotheyknow.com
Dear Miss Lloyd Williamson Thank you for your Freedom of Information request which we received on 27 June 2013. You asked: Many ESA & PIP claimants use powerful prescription medication (such as morphine, fentanyl, anti-psychotics) which commonly have significant side effects and come with the legally required warnings of ‘may cause drowsiness, if affected do not drive or operate heavy machinery’ or similar. Clearly such side effects may make it unsafe for claimants, or those around them, to always be able to carry out commonplace day to day activities. If a claimant is then unable to do some activity on a regular basis then surely the side effects become disabilities in their own right? 1. Can you please advise how Atos & Decision Makers are instructed by the DWP to record information relating to any side effects of prescribed medication? What standard, or personal, comments/recommendations can they record & how do DWP guidelines (for Atos & for Decision Makers (DMs) make use of this information in assessing disabilities in relation to ESA or PIP decisions? Can you please provide a copy of that specific part of DWP guidelines? 2. As these side effects can often make claimants more prone to accidents & injury, as well as making them more liable to injuring others, can you please confirm how this information is recorded & how DWP guidelines (for Atos & DMs) recommend making use of this information in assessing disabilities in relation to ESA or PIP decisions. Can you please provide a copy of the DWP guidelines specific to this question. 3. Do Atos & DMs have a reference guide to the medications and side effects of all medications that any claimant takes? Are they mandated to use that information and include that in their decision making or assessments? Or mandated to ignore it? Or is the onus on the claimant or their doctors to spell these out? Is there is a DWP or any other guide to medications and their known side-effects & warnings available to both Atos & DMs and the recommendations they should make as a result? If so can you please provide a copy? Or DWP guidelines advising side-effects experienced, such as sleeping for 36 hours straight through, are not to be accepted as disabilities for the purpose of ESA or PIP assessments? 4. Is there a DWP requirement to specifically ignore side effects of prescribed medications that make a claimant’s quality of life somewhat better/ improves life expectancy/is ultimately a cure or even a partially effective treatment, on balance, for that claimant’s condition despite such side effects? Would ignoring such side effects equate to indicating that the patient should not take that medication in order to be assessed correctly? Is doing so (stopping medication) an acceptable course to take when being assessed? Both the ESA50 and the WCA & no doubt PIP assessments would then, in all likelihood, be very different as new (to the DWP) signs & disabilities would have to be taken in to account. Could you please provide a copy of DWP guidelines relating to recognising the impact of side effects from prescribed medication and on assessing patients who are not taking their prescribed medication at the time of being assessed. Do DWP guidelines state that Atos/DMs can insist on a claimant taking their DWP Central Freedom of Information Teame-mail: freedom-of-information-rxxxxxx@xxx.xxx.xxx.xxOur Ref: FOI297618 July 2013
medication when they complete their ESA50 or WCA? Or instead that they should be assessed as if they were taking it? Or if they were taking what an Atos HCP such as a physiotherapist would prescribe for those conditions? Please provide any specific DWP guidelines relating to this area, thank you. 5. Where in the ESA50 or in the proposed PIP form is pain taken in to account? Being able to do something, such as reach for a jacket pocket, is not the same as being able to do it but the action causing the claimant significant pain. Could you please provide a copy of any DWP guidelines relating to pain experienced by a claimant and it’s ‘place’ in any assessment or an initially submitted form? How is refusing to do something on the grounds that it would be painful to do it viewed within DWP guidelines for Atos/DMs/JCP staff? Is refusal to do something on such grounds an ‘automatic fail’ on any benefit claim or an instantly sanctionable offence? (Most people could get over a 1m high wall made of broken glass but it would be stupid to choose to do so). Again could you please provide the relevant DWP guidelines. 6. Does the DWP consider pain to be a mental or physical condition? Pain cannot be recognised without the brain (the mind) recognising it, no matter how severe (there is actually a rare condition in which this occurs) it may be. Many physical conditions are only recognisable by the brain ie the mind. Is a migraine a mental or physical condition? Are neurological conditions arising from brain injury mental or physical? Even where the damage does not arise from an external injury to the brain? Is feeling nauseated a mental or physical condition – many treatments for many physical conditions work by having an effect on the brain, the mind, not on the stomach or other body, or brain, part. Would you please provide a copy of the DWP guidelines (for Atos, DMs and the DWP) relating to a complete functional separation of mind and body in assessing claimants. Could you please provide a copy of the medical advice provided to the DWP compelling you to completely separate the two. If this was a Government decision but then passed on to the DWP can you please advise who I should contact in order to see the medical evidence on why the mind and body can now be safely considered as two completely separate entities? 7. As a driver under the influence of some medications can be arrested and prosecuted by the police for driving while intoxicated can the DWP, Atos or DMs mandate a claimant to drive solely in order to get to work placements/training/WCAs/JCP, where no adequate, tolerable or even any, public transport is available? If they are then unable to do so for those reasons, that they are a risk to themselves or to others, as a direct result of common side-effects, do DWP guidelines require that such claimants then be automatically sanctioned for failing to attend? If some public transport is available but using it would be intolerable for the claimant do DWP guidelines mandate that the claimant must still use that form of transport irrespective of the impact on the claimant or those around them? Or if a claimant is unfit to use any form of transport available and as a result fails to attend a/many/all mandated work related activity/JCP interview etc will they then be automatically sanctioned? Even if the claimant made the sensible & legally correct decision that they were, for example, too sedated to drive safely? Could you please provide copies of the specific DWP guidelines relating to this also. I genuinely apologise for the sheer number of questions but rather than split them in to multiple FOI requests I thought it would be easier to understand if I chose to combine them as they all seem to revolve around the same core issues and so may be covered together in any and all relevant DWP guidelines/internal memos or any other DWP written or electronic records.
The Work Capabilities Assessment (WCA) Handbook covers all of the issues raised in your request relating to medical conditions and the effects of medication. Practitioners are expected to look up medication that they are not familiar with in standard texts. Section 3.1.3.7 of the WCA Handbook covers medication. Please find the link below which takes you to the WCA Handbook: http://www.dwp.gov.uk/docs/wca-handbook.pdf The FOI Act relates to the provision of factual information so we have not provided a response to particular scenarios. If you have any queries about this letter please contact me quoting the reference number above.
Yours sincerely Business Management Team Health & Disability Assessments (Operations) dwp.medicalservicescorrespondence@d
susanne says
There’s free subscription to OPEN NOTES
US policy requires immediate release of records to patients
BMJ 2021; 372 doi: https://doi.org/10.1136/bmj.n426 (Published 18 February 2021)
Liz Salmi, senior strategist of research dissemination for OpenNotes1, Charlotte Blease, Keane OpenNotes scholar12, Maria Hägglund, associate professor in health informatics3, Jan Walker, co-founder of OpenNotes12, Catherine M DesRoches, executive director of OpenNotes12
Correspondence to: L Salmi lsalmi@bidmc.harvard.edu
Patients and clinicians should embrace the opportunities
On 5 April a new federal rule will require US healthcare providers to give patients access to all the health information in their electronic medical records without charge.1 This new information sharing rule from the 21st Century Cures Act of 20162 mandates rapid, full access to test results, medication lists, referral information, and clinical notes in electronic formats, on request.
The US is not alone in providing patients with full online access to their electronic health records. In Sweden, patients gained access to their records between 2012 and 2018.3 Estonian citizens have had full access since 2005.4 The sharing of personal health information isn’t without precedent in the US: around 55 million people already have access to their online clinical notes,5 and many more have access to laboratory results and other parts of their records. But for some US clinicians, the new rule may feel like a shock.6
The new legislation also stipulates that people should be able to download their data to third party digital applications (apps) and aggregate all their health records into their digital platform of choice by October 2022, allowing people to share health information with anyone involved in their care.
Studies show that patients who read what is written about them by clinicians feel more involved in and knowledgeable about their care, feel better prepared for visits, and report being more likely to follow their clinicians’ advice.9 These results are consistent across ethnic groups, gender, socioeconomic status, and education, and the same benefits accrue to family caregivers. 10
As with all innovations, some concerns have been raised. The rule requires all test results—including imaging and pathology reports—to be released without delay. Some people may therefore learn of a cancer diagnosis, for example, from an online health record alert rather than during a conversation with a clinician. In a study from Sweden, however, many cancer patients who regularly accessed their personal health information reported that immediate access to test results actually reduced what patients term “scanxiety.”11 As the US moves to a more transparent health record ecosystem, there will be an opportunity to elicit patients’ views and experiences of the benefits and risks of receiving test results in real time. In the future, it should be possible to ensure patients have a choice over how and when they receive health information.
Patients have much to gain from the new rule on information sharing. Around 80% of internet users search for health information online12; combining these searches with personal health information from the medical record is likely to result in more accurate, relevant, and useful information. On the other hand, legitimate concerns include a greater infringement of online vulnerability associated with search engines collating and selling medical data that people now provide freely without fully comprehending the long term consequences.1314
A further concern is that the new US rule allows clinicians to block information. A “preventing harm” exception allows clinicians to hide information from patient view if they believe the patient may harm themselves or others as a result of reading their personal health information. Recognising that this discretionary right may be misused, the US Department of Health and Human Services has established an online reporting system for “information blocking”—that is, hiding information from patients.
Finally, the new rule still does not change who owns health records outright. Records remain the property of hospitals or doctors in half of all US states. Laws in the remaining states view records as having shared ownership with patients.
US healthcare organisations may choose to comply with the rule in a way that helps ensure patients know about their enhanced right to access and use their health information for empowerment and engagement, or they may simply keep quiet about it and hope patients don’t notice their new rights. Choosing to keep quiet would be a mistake. Full sharing and transparency of personal health information should strengthen patient-clinician communication, raise health literacy, promote self-management, enhance teamwork, and increase trust. Patients’ voices must now be put at the centre of discussions and debates about information and data sharing in healthcare to ensure that all reap the benefits of the digital age.
Anne-Marie says
I was just thinking how I don’t feel I belong or fit in anywhere. Whether it be groups or the system I always felt I was on the outside.
When it comes to the system I have never fit into any box there either. I have always been on the outside unless I’ve been given a false label that fitted me into one. That false label was a con or lie by the system because I never was a true alcoholic either otherwise I would still be one now. It was a drug induced problem but the false label helped me financially at the time.
I was then kicked off incapacity benefit by atos when they decided to transfer everyone from incapacity benefit over to employment support allowance. I had a flat rented out so they said I had an income and was not entitled to any other benefits as they were means tested. Incapacity benefit wasn’t means tested so I was ok with that one.
I was still on mirtazapine and still on supplement drinks 3 times a day and was still under weight but had no choice but to have to find a cleaning job in the end to survive.
It took me a couple of years to physically cope with it because I was so underweight. I felt lucky someone gave me a chance with a part time job. It was physically hard going at first.
I still feel as if I don’t exist in the eyes of the system and the only place I ever felt really welcome and at home was at rxisk and surviving antidepressants. My life was in such a mess I could not follow surviving antidepressants properly though because I had too many problems and it didn’t cater for the drug wreck damage that happened to me although it is the only place to go to for withdrawal.
I feel left in a kind of void and limbo now looking back at all the carnage still an invisible human being. I feel I do have PTSD from the system who I feel constantly misjudged me all the time and got things so wrong.
I feel weird now when I see healthcare proffesionals (haven’t seen one for years until I had the jab). I feel they are alien to me, they don’t know me or know what I have been through and I never want to talk to them about it now either because I really cannot be bothered with battling with ignorant fools.
I feel mentally exhausted from my journey. I feel tears fill my eyes and get emotional at the fear of dealing with them ever again.
Brenda says
Anne-Marie, your story is a very sad one. There are a lot of us out here who have been traumatized by our medical treatments–or at times the lack of treatments! It can be especially difficult to find a physician who really takes the time and involves us in our own care in the right ways. I know exactly what you mean about not wanting to see or deal with doctors any more.
It may interest you to know that I, too, had an experience with withdrawal from an SSRI. How I even came to be on one is due to the inadequacies of modern medicine, which led me to take the darned thing. When I quit taking it, I didn’t taper slowly enough, and I wound up with a classic clinical depression. I had every single symptom, except for suicidal intent. I had the desire to die, but no intent to make it happen.
Fortunately for me, I chanced to get connected to a physician who broke the rules of the clinic where she worked so that she could give me the help I needed. She also gave me her personal phone number and told me to call her, any time of the day or night, if I actually began to plan to hurt myself. I was touched.
There was a class action lawsuit over this drug, which she told me about. I eventually threw my hat in on that, and was surprised some years later to get a bit of the settlement on it. It’s not that the drug was addictive, per se. But it was habit-forming, though the manufacturer’s data on the drug claimed it was not. There were enough of us who had a problem that the company was going to have a hard time proving it never happened to us. So they settled.
It took me a year to recover from that depression–the only clinical depression I’ve ever had in my entire 67 years of life. Garden-variety depression? Situational depression? Sure. Everyone has those times in life. But I never had a bona fide clinical depression, until I tried to get off of this SSRI. (My recovery was certainly delayed because my depression occurred in June 2001. We all recall what happened in September 2001…. The entire U.S. was certainly in a deep depression, then, that we had a hard time digging out of.)
Anne-Marie, we have a support group on FB for people who have been traumatized by their medical treatments. It’s called the Medical PTSD Support Group. Look us up and join us, if you’d like.
You say that you feel invisible? A woman recently joined our group, not for herself, but because her 13-year-old daughter has a history of treatment trauma. The girl has ongoing medical problems, however, so she has to continue to get medical care. Everyone acts like the girl is just being bratty when she “shows out” in the hospital or the doctor’s office (or as you Brits say, the surgery), and the mother couldn’t find people who believed her when she said that her daughter was terrified–not bratty! When the mother joined our group and told her story, we welcomed her and validated her view of her daughter as traumatized. She said that she read our comments and began to cry. “You see us!” she said. “You actually see us!” She also shared our comments (judiciously) with her daughter, to help the girl get a view of herself that validated her feelings instead of telling her she was being bad and misbehaving. Apparently it had an impact there, too.
So do contact us, if you’d like to join us. I suspect we will be able to see you, too.
susanne says
At the beginning and for along time after of experiencing the nightmare it is almost impossible to drum up the energy to request medical notes from those who have added to the harm you describe Anne-Marie. If people are using Apps it looks as though it might be easier than asking a GP or other health service directly. Even so info can be redacted. But also info can be added by an individual (but not deleted.) Such as a request to add info to notes as to the cause of illness ie adverse effect of drugs.Requests for access to medical notes can also be made to services used other than GP practices eg hospitals which may be useful. Have you seen the comment by Brenda Denzla on last David Healy blog? – she describes what you have said so heart -renderingly and many of us do feel amounts to medically caused PTSD Maybe they could invent another label for people emotionally and physically abused by doctors . I don’t go near them myself not even for a ‘jab’ not even though there are decent medics in my personal life. There are also countless numbers of reports about the heartless humiliating and callous way people have been treated by the so called ‘benefits’ agencies but when people do manage to challenge them there’s been a massive number of successes. If the disgraceful MHRA and NICE are documenting the adverse effects of drugs maybe including that information to shove under their noses when claiming might help to provide evidence of harms caused by drugs is a fact .One set of policy makers flagged up that claimants might tell lies – he got that the wrong way round –
From Patients Association helpline ( loads of info on access onwebsites including for those who don’t use Apps)
Seeing your medical records
Introduction
How to get your GP records
Using the NHS App to access records
A guide to formally requesting medical records
Requesting the records of someone who has died
Seeing a child’s medical records
Requesting the records of a vulnerable adult
More information on medical records
Complaints
Useful links
Introduction
This leaflet explains how to get copies of your medical records in England and Wales.
Get help Advice and information leaflets
Seeing your medical records
Contents
Introduction
How to get your GP records
Using the NHS App to access records
A guide to formally requesting medical records
Requesting the records of someone who has died
Seeing a child’s medical records
Requesting the records of a vulnerable adult
More information on medical records
Complaints
Useful links
annie says
Working out what was best for us, after the ‘home-wreckers’ took over, disability was out of the question. I had to make enough to pay for new accommodation, feed the child and the hungry lab and so exhausted and crushed. I became a cleaner, a gardener, a cafe person, a chamber-maid and it was really tough. But as I got in to it, work, work, work paid off and I got some self-respect back and more importantly I could discharge a lot of the angst which was seeping out..
I had got so used to the cold unrelenting battle with Seroxat and my spell with the doctors who all but took over. But there was never a freedom, the real battles had only just begun.
It was five years afterwards, that I was concerned about about what was in my medical records.
I had just moved surgeries, it was half an hour from my previous surgery driving round the loch as opposed to ten minutes in a boat…
The Sikh owner’s wife invited me in to her office. I asked if a copy of my medical records could be copied back to my original surgery. She didn’t quibble, she didn’t ask questions, she just said “that’s fine”.
My medical records consisted of papers two inches thick. Childhood operations, adult operations, pregnancy and birth and quite a bit on Seroxat.
I then went back to see Dr. Nova Scotia just before he left for Nova Scotia.
That’s when he dropped the bombshell…
He sent my medical records back to my surgery.
I requested a copy of my medical records.
Two law firms had requested copies of my medical records.
That is an awful lot of photocopying and not a murmur was made, in fact nobody raised an eyebrow or asked any questions. I suppose the only over-strained ,was the photocopier and lawyers had legal-aid to cover their costs.
My notes contain the pencil marks made by Dr. Nova Scotia when he obviously matched the Prescription List to the ‘Actual Prescribing’, which came up short. That’ll be £99, no written report.
My Seroxat Stuff fills a large Crisp Box, press cuttings about chain saws, murder and imprisonment and the like, copious legal correspondence, copious correspondence with the village surgery, letters from MHRA, Richard Brook, My MP, Canada, etc. etc. etc.
The whole world can change for someone in receipt of their medical records, not just the recipient but also for the doctors.
If my doctors knew I would be reading all their notes from 1999, I suspect a lot of what they said would have been ‘modified’ accordingly…
It can be quite a shocker, not for the faint-hearted.
If I need to research something, I have to steel myself, otherwise it now all stays in its crisp box…
The notes tell a vivid story –
The racy thriller aspect completely missing –
Prescription for Sorrow is such a good title for drug wrecks everywhere and it is a crying shame that we walked straight in to the world’s most sensational medical disaster…
susanne says
A note of caution Informed consent also includes knowing how info is used Whether pseudoanonymised or not it is never totally anonymous to the person who is doing the admin to make it pseudo
17 March 2021
Lucy Olsen
Foundation Doctor
Re: How to conduct written online consultations with patients in primary care Minal Bakhai, Helen Atherton. 372:doi 10.1136/bmj.n264
Dear Editor,
This is a useful guide for doctors, but the patients’ perspective is not represented and there are a number of major concerns. At my surgery, patients are no longer being given the option to make a face-to-face appointment with a GP unless they state the reason for their appointment to reception staff. My experience is that they are then pressurised to use an online consultation. This can only be done by agreeing to allow data to be shared with the private company eConsult Health Ltd. As a patient, I have always felt I could be completely honest with my GP because my private information would be kept absolutely confidential. In 2018, patients in my practice were assured that while receptionists would ask the reason for wanting an appointment, they still had the right to refuse to give this information and would be given an appointment. Now I am told a reason must be given before an appointment can be arranged. My reluctance to give a reason and use eConsult resulted in an appointment being made not with my GP but with a non-doctor member of the team. This felt like some kind of punishment for being difficult.
Opting in to an online consultation means consent is given for data to be shared with eConsult Health Ltd, which according to its website now operates across 3,291 practices in the UK. The data includes name, gender, date of birth, NHS number, email address, telephone number, postal address, health information such as symptoms, conditions, medication, and other details (already held in GP records). It appears that problems brought about by the pandemic are being used to erode patients’ rights to privacy and control over their personal data. Surely patients should be able to see a GP without being made to divulge information that they clearly do not want to give? Whereas online consultations have a place, they should be entirely optional, since many patients will continue to prefer a face to face visit with someone they know and trust. While data sharing is one of the concerns for patients, I hope there is also ongoing research into the risks and benefits of this ‘digital first’ approach. Whatever happened to patient choice and ‘nothing about me without me’
Competing interests: we are both members of Keep Our NHS Public
tim says
The absence of access to any Stare Welfare Benefits (after becoming maimed, labelled and drug wrecked) as a result of misdiagnosed psychotropic drug adverse Reactions (ADRs) may represent an additional dimension to the forced exile from humanity resulting from psychiatric drug induced iatrogenesis.
These multi-systems, life-long injuries are not always visible, recognised, or correctly diagnosed, yet they may prevent any possibility of further education, employment, (also pension) and social inclusion.
Multiple misdiagnosis of ADRs not only cripples physically, emotionally and psychologically, the annihilation of self worth, the social injury that inevitably follows inappropriate detention, enforced further drugging, and the spiral into cascade iatrogenesis that follows, cannot be easily converted into an application for any form of confrontational financial benefit.
The scale of personal destruction and denial of all life’s opportunities surely demands a bespoke system which, however unrealistic. This would have to be based on a ‘we believe you’ mindset of the assessment system.
With the current lack of awareness and/or denial of psychotropic drug toxicity and the reality of psychotropic drug withdrawal syndromes in both Primary and Secondary Care, the impossibility of access to any state financial benefits for our drug-wrecked loved ones seems to be a further cruel and destructive reality.
How could our loved ones not be further injured by the contempt they would face even by making an application. Haven’t they been ridiculed, humiliated, tormented and rejected enough by those who are well paid and well pensioned to provide ‘professional care’ for their never-existed SMI misdiagnoses.
Perhaps if the rich and famous looked at the failures of ‘Mental Health’ and became advocates for less iatrogenesis, rather than propagandists for more injury, some progress might be possible?
susanne says
For many people the DWP (department for work and pensions) was and still is the last straw
Patrick Butler Social policy editor in The Guardian
Fri 7 Feb 2020 16.55 GMT
The Department for Work and Pensions (DWP) has investigated at least 69 incidents of benefit-related suicide in recent years. The National Audit Office said in a report it was highly unlikely that this reflected the real number of cases.
A year later the suicides are still being reported :-Wed 27 Jan 2021 Just one real person not a number –
A severely mentally ill young mother died from a deliberate overdose after the removal of her disability benefits left her destitute, trapped in a months-long state of high anxiety and haunted by suicidal thoughts, an inquest has concluded.
David Anthony Freud, Baron Freud, PC (born 24 June 1950) is a British politician. He is aslo a beneficiary of the hospitality (benefits) given to the Freud family after fleeing to UK from Nazi Germany
Freud is the son of Walter Freud and a great-grandson of the physician and pioneering psychoanalyst Sigmund Freud. (Ironic that he so lacked compassion for those in dire straits and whose lives he subsequently ruined.
Freud’s 2007 report – dubbed ‘the Freud report’ but officially titled Reducing dependency, increasing opportunity: options for the future of welfare to work – called for the greater use of private sector companies who would be paid by results, for substantial resources to be made available to help lone parents and people on Incapacity Benefit back into work, and for a single working-age benefit payment to replace Housing Benefit, Jobseekers Allowance, etc.[10] His central thesis was that spending on ‘delivery’ – such as schemes to get people back to work – would save money in the long run because there would be fewer people being paid money in the form of benefits. Freud wrote:
Given the active labour market policies now pursued in the UK, there is a close link between effective expenditure on employment programmes and expenditure on working age benefits. Effective spending by the [DWP] on labour market policies or administration can result in real reductions in benefit expenditure (and vice versa)[11]
His ideas foreshadowed the Work Programme and Universal Credit.
In 2012, he outlined some of his thoughts on welfare reform in an interview by saying: “People who are poorer should be prepared to take the biggest risks, they’ve got least to lose. We have, through our welfare system, created a system which has made them reluctant to take risks, so we need to turn that on its head and make the system predictable so that people will take those risks”. In the same interview, he said his primary concerns were the “nooks and crannies” in the benefits system where people could sit for long periods without ongoing scrutiny. He claimed the people who did this were: “The incapacity benefits, the lone parents, the people who are self-employed for year after year but only earn hundreds of pounds or a few thousand pounds, the people waiting for their work capability assessment then not going to it – all kinds of areas where people are able to have a lifestyle off benefits and actually off conditionality”.[18]
In 2014, Labour MPs called for Freud’s resignation after he was secretly recorded responding to a question posed at a fringe meeting of the Conservative Party conference. The question was whether some people with disabilities should work for a token sum in order to enjoy the non-financial advantages of engaging in the world of work, perhaps with their wages topped up by benefit payments. Freud, thinking out loud, agreed that there was a small group of disabled people who were “not worth the full wage” and said he would go away and think about it. Freud had to apologise. He said: “I was foolish to accept the premise of the question…I care passionately about disabled people
There were also ‘snoop lines’ set up in UK encouraging people to report anonymously on people they decided were cheating the system. Claimants lives are now so strait jacketed , there are so many hoops to jump through that the state has intolerable levels of control wich restrict peoples’ ability to develop strategies for getting well again or to find employment. Any job done off the books is a risk of losing ‘benefits’ Freud and his like interfere in lives, cause chaos, and move on …
susanne says
People are not always obliged to have face face to face meering during Covid so good idea to keep copies of all paperwork e mails etc. including the certificates ,sent to DWP by claimants
Update June 2020
You are here: Parliament home page > Parliamentary business > Publications and Records > Committee Publications > All Select Committee Publications > Commons Select Committees > Work and Pensions > Work and Pensions
DWP’s response to the coronavirus outbreak Contents
Health assessments for benefit claims
Introduction includes
The challenge of providing medical evidence
Delays in processing claims
Claims started before the outbreak
Appeals and mandatory reconsiderations begun before the coronavirus outbreak
Extension of tribunal awards
Changing numbers of claims
Audio-recording assessments
Accessible communications
mary H says
Claiming benefits is certainly full of pitfalls and anything that can be done to help matters will be welcomed by all of us I’m sure. Not that I claim for myself, of course, but am involved in supporting the claims of both Shane and his younger brother – as one of the pair “who knows them best”.
When the first ever claim was made on behalf of Shane, soon after the Seroxat fiasco, it was rejected outright – not a penny piece available for him. Not one to let the system dictate without a fight (!), I went to CAB for advice. Shane and I went along with our evidence – the state of Shane being the crucial part of that I guess. CAB said to appeal – we did and the highest rate of benefit was awarded. That was many years ago but those forms still irritate me when they come along. There is a question there about drugs and their involvement in creating the claimant’s condition. I guess they expect that to be ‘street drugs’ but I always explain there about Seroxat. I feel that the few questions about mental health are poorly worded – no chance to be specific about needs etc. You are allowed to enclose extra notes of course and they certainly get a full account from me! I do worry about the time when Shane may be fairly free of the medications – they say that you don’t need to be on meds. for the benefit to be granted but i do wonder what their reaction would be to an empty box where medications should have been listed.
I must admit that we’ve had very few problems over the years once that initial rejection was overcome.
Here is an illustration of how difficult it is to create a full picture of an applicant. Shane’s younger brother has mild learning difficulties and is on the Autism spectrum. Annually, we used to trudge to the Jobcentre for his annual review. He would be fired up with the expectation of them finding him a job, whereas I was infuriated by the fact that they expected ‘progress’ from year to year despite my adding, in capitals, that ” this condition will be life long”. He is a very sociable young man and since his social skills are weak (endless chatter to anyone, including an interviewer!) beforehand we have lengthy chats about ‘appropriate behaviour during an interview’. Two years ago, at a different Jobcentre, with a lovely older lady taking the interview, the inevitable happened. As we got up to leave, he gave her the biggest hug imaginable! I cringed but said nothing as I felt that possibly they had now seen how vulnerable he can be in the real world of work. As a result, he doesn’t need annual interviews any more – they have now accepted that his needs are far greater than anyone had expressed in the past!
To return to Rxisk’s idea of certificates, I guess the problem will be one of acceptance. The interviewer’s word seems to be the decider. Maybe copies should be sent to the ones in charge of the interviews, asking for their view of the way forward in ensuring suitable outcomes for those damaged by prescribed medications.
tim says
Thank you for your insight and your record of such painful experience. I have struggled to conceptualise how a bespoke system of compensation might be developed to recognise the extent of suffering and loss caused to individuals and to their families by psychotropic drug ADRs being misdiagnosed as Serious Mental Illness, and the exacerbation of physical, emotional.psychological, and social ‘G.B.H’. caused by the incarcerations and forced drugging which can follow diagnostic incompetence, ADR ignorance and/or denial.
Tort is not realistic. The power imbalance and society’s misplaced trust in ‘M.H benevolence’ mitigates against due process and against justice.
No fault Compensation Schemes could not work as those responsible appear to have no commitment to their Duty of Candour. In our experience: Psychiatry means never having to say you’re sorry.
How could an objective Serious Incident Investigation for invalid psychiatric detention, cascade enforced drugging and cascade misdiagnosis, ever successfully address a life stolen and destroyed by misdiagnosed SSRI/SNRI/AD induced AKATHISIA, when it appears that so few prescribers understand or recognise the condition?
My experience suggests that any attempt to challenge the terrible psychotropic ADRs so callously imposed on our loved ones will result in brutal, chemical and bullying retaliation.
The closest concept I have been able to think of – (which could never work because of the above mentioned power imbalance, and also the ‘Mission Impossible’ of ‘Rotten Barrel – not Rotten Apple’) – might be; The creation of an Iatrogenic/Pyschotropic Criminal Injuries Compensation Scheme.
Whilst remaining convinced that financial redress, recognition of service failure and APOLOGY would create a foundation for improved patient care and improved patient safety, I see no prospect of this happening.
So our drug wrecked loved ones are left alone and so very vulnerable when we (who tried so very very hard for them) have died of old age and grief.
So heart breaking for us to contemplate leaving them behind in an intolerant, ill-informed world where they will face rejection, and may remain at risk of further misdiagnosis and further ADRs.
Our maimed, drug wrecked, beloved children may be left to exist in a society where they are regarded as ‘Liebens Unwerten Lieben’ —- Lives Unworthy of Life’. (German misspelling anticipated!)
Unless of course a revolutionary new medical approach to patients based on: – – –
‘I listen, and tend to believe them’ if the picture fits’ – – – replaces the arrogant and contemptuous refusal to consider ADRs which we experienced at such cost and such heartbreak.
Before we go, an APOLOGY alone would be a long overdue step in the right direction.
susanne says
Personal Independence Payments (PIP)
The daily living component will rise from £89.15 to £89.60 for those on enhanced payments, while those on standard claims will see a rise from £59.70 to £60.
extension://oemmndcbldboiebfnladdacbdfmadadm/https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/918328/pip-assessment-guide-part-1-assessment-process.pdf
PIP has replaced Disability Living Allowance since 2013 and doesn’t affect other allowances Many are unaware they should claim it.
For people who want to try a claim for disability caused by adverse effects of drugs this may be a route to add on the Certificates with evidence
It’s worth ploughing through the Guidelines for assessors to get tips on what they look for Adverse Effects is one component for DWP allowances -this guide is 65 pages long so needs picking through,
annie says
Die with a smile …
Paul John Scott @pauljohnscott
“Wait, didn’t I just tell you the cure was found by some psychiatrists repurposing their favourite drugs?” Die with a smile: antidepressants against COVID-19 – For Better Science
Replying to @pauljohnscott
“Prozac is not a harmless drug. Among its side effects are sexual dysfunction, addiction with withdrawal syndrome, QT prolongation (same cardiac side effects as chloroquine), and risk of suicide.”
https://forbetterscience.com/2021/03/26/die-with-a-smile-antidepressants-against-covid-19/
So either we truly have a magic game-changer drug, which is Prozac or any other antidepressant, or we are chasing another chloroquine mirage. What is definitely true, that there will now be mean people taking those psychopharmaca for no valid reason but some shaky clinical data, in vitro studies and press releases. And Prozac is not a harmless drug. Among its side effects are sexual dysfunction, addiction with withdrawal syndrome, QT prolongation (same cardiac side effects as chloroquine), and risk of suicide.
Who cares. Some doctors, like here the US gastroenterologist Farid Jalali, use the pulpit of their authority to publicly advocate the use of Prozac and other SSRI right now, on non-hospitalised COVID-19 patients, and this is apparently endorsed by Angela Reiersen, whose own JAMA clinical study was neither large nor convincing enough.
Simon Wessely Retweeted
RoySocMed @RoySocMed
Listen live to RSM Immediate Past-President, Professor Sir Simon Wessely @WesselyS on Desert Island Discs with @laurenlaverne this Sunday.
AntiDepAware Is No Longer Active
March 26, 2021 By Phil Hickey
https://www.behaviorismandmentalhealth.com/2021/03/26/antidepaware-is-no-longer-active/
Your impact has been enormous.
The lack of profound information to Disability Wrecked leaves them on a Desert Island with no future of care, the ‘Islanders’ need to provoke more transparency to get them off it and swim with a new tide of SSRI disabilities and a new tide of leadership where there has been none before …
susanne says
https://publications.parliament.uk/pa/cm5801/cmselect/cmworpen/178/17809.htm#_idTextAnchor079
DWP’s response to the coronavirus outbreak – How many more suicides will be put down to mental illness on coroners reports – rather than Capita Atos and the like , disgusting DWP businesses licking the arses of government for cash
6Health assessments for benefit claims
Introduction112.The Department’s changes to assessments for disability benefits have gone some of the way to ensuring that disabled people get the payments they need during the pandemic. However, with such fast-paced policy change, we heard that some pre-existing problems with health and disability benefits have been exacerbated during the outbreak, and some new difficulties have arisen.
The challenge of providing medical evidence
113.The previous Committee’s February 2018 report on PIP and ESA Assessments described the assessment process for the two benefits:
PIP and ESA have similar assessment processes. All claimants begin by filling in application forms detailing their conditions and their effect on their day-to-day lives. These are submitted, alongside any supporting evidence (for example, from medical professionals or carers) to the Department. The Department then forwards the forms to one of three contracted assessment providers. The contractors assess the claimant’s functional impairment against a series of descriptors provided by DWP. For some claimants, the assessment is made on the basis of written evidence alone. Most, however, are required to attend a face-to face assessment carried out by a healthcare professional (HCP) employed by the contractor. Following the assessment the HCP sends a report recommending descriptors to DWP, where a Decision Maker decides on entitlement.
If the claimant disagrees with the decision, they can challenge it by requesting a Mandatory Reconsideration (MR). This is an internal review of the original decision by a second DWP Decision Maker. If claimants are still unsatisfied with the outcome after MR, they can go to a Tribunal.133
Since 17 March, if a person makes a new PIP or ESA claim, if they apply for, or are due a routine reassessment, or if they have a previously booked assessment rearranged by the Department, their assessment should happen over the phone or on paper.134 Some remote tribunal hearings are continuing, either over video conferencing software, over the telephone or on paper.135
114.We heard repeated evidence that the continued requirement to provide medical evidence was causing frustration and delays for people who were trying to claim PIP and ESA. The Disability Benefits Consortium, Disability Law Service and Macmillan Cancer Support told us that GPs have refused to issue “Fit Notes” for people who asked them for medical evidence to support their benefits claim.136 Some people who responded to our survey about people’s experiences of the benefits system during the coronavirus outbreak told us that they felt that medical staff were not able to treat benefits applications as a priority. They described their experiences:
“When you have been out of work sick getting a sick note took ages as doctors waiting lists are 3 to four weeks long to get an appointment.”
“I couldn’t find any guidance on the extension for returning the medical questionnaire both online and by telephoning ESA. There is no help available to get this form completed. I cannot get medical evidence either as my GP is too busy and my mental health centre is closed.”
“I rely on fit notes from my GP in order to continue to claim ESA. I had difficulties explaining this to the GP receptionist who informed me that I was not ill and would not have a telephone conversation to renew my note. I am unsure what will happen next as no one can advise me other than my ESA will stop without a fit note. I do not qualify for any other benefit.”
115.We heard that the task of supplying medical evidence is harder in the absence of face-to-face support from organisations. Mind, the Children’s Society, Child Poverty Action Group and Citizens Advice identified that disabled people are particularly affected by the impact of lockdown on specialist assistance.137 With this in mind, Citizens Advice proposed that the Department could be more flexible with the types of evidence it accepts and “put more trust in the claimant”.138 Macmillan suggested that patient testimony and carer testimony could be used instead of medical evidence, and that cross-departmental work between DWP and the Department of Health and Social Care to reiterate guidance to clinicians is a “priority”.139
116.On 25 March, the Permanent Secretary told us that the Department would use the evidence it already held about a claimant to try to reach a decision. He said that:
In our case, for new PIP claims, we are not doing face to face assessments, as the Secretary of State has said. We are working to use the evidence that we have on paper, evidence we might have. For example, if a PIP claimant has already been through a work capability assessment for Universal Credit or ESA and we have evidence there. We are making outbound telephony if we need to fill in any of the gaps. We are all trying everything we can to expedite this, to get people through the process as quickly as possible to get the money that they are entitled to.140
117.Ministers have recognised throughout the outbreak that obtaining medical evidence can be difficult. On 23 April, the Minister for Disabled People told us that the Department is taking a flexible approach to medical evidence:
For new claimants, the terminally ill and for those who ask for it, we are seeking to do it by telephone and by paper-based reviews, adopting a very sympathetic, claimant-supportive view of this because we recognise that there are increasing challenges to being able to get adequate medical evidence, so we are relying very much on the claimants’ cases as they explain them.141
Ministers reiterated this on 15 May, when they told us that they “recognise the pressures on clinical staff” and “will continue to consider alternative evidence and work flexibly with the claimant and/or their clinician(s) to make a quick determination”.142
118.Medical professionals are facing unprecedented strain during this pandemic. At the same time, lockdown conditions have left people without their usual support, making it harder for them to navigate health assessments alone and to obtain the medical evidence they need to support their claim. The Department clearly recognises both problems: but front line experiences suggests that there may be a gap between Ministers’ expectations and reality on the ground. We recommend that DWP communicate clearly to its own staff and to its contractors that they should take a proportionate and flexible approach to evidence, which demonstrates the appropriate level of trust in claimants, recognising how difficult it may be for claimants to access medical evidence and appropriate support. We recommend that the Department collaborates with the NHS and relevant professional bodies to ensure that healthcare staff can provide claimants with the evidence they need, while ensuring this does not put undue strain on medical professionals.
Anon says
Without the doctor(s) true assessment, one is left in a lurch.
It is not what you know but who you know?
Doctors and doctors help each other however, when a patient’s health has been impacted by their negligence, it is no different to what the Nazis did to the Jews during World War 2!
Trying to access what you are entitled to is not going to happen unless you have someone who is genuine/sincere, assist you!
The doctors ruin your life and then you have to justify the damages or put yourself through more risky tests and procedures, before you get your entitlements.
Some doctors are masters at hiding the TRUTH and they will never admit that their tools induce harm.
The LAW even protects them.
When will there ever be a day when some of these doctors are prosecuted like murderers?
What is the difference between guns and meds?
susanne says
Both are lethal, put them together and James Holmes is jammed up in jail on even more drugs to fry his brains – add lying, deceitful ignorant medics in the mix and the ultra toxic mixture is a complete cess pit of injuries and deaths.
annie says
A ‘Bullet’ goes in a ‘straight-line’…
Science Plays the Long Game.
Paul John Scott @pauljohnscott
Ben Carey uses his final column in the Times to note the medical ghostwriting and SSRI harms I wrote about in my novel #Malcharist
https://www.nytimes.com/2021/04/01/health/mental-health-treatments.html?smid=tw-share
Paul John Scott @pauljohnscott
“Like most science reporters, I had wanted to report on something big…At minimum, I expected research that would help people in distress improve their lives. But during my tenure, the science informing mental health care did not proceed smoothly…
Paul John Scott @pauljohnscott
“On the one hand, the field attracted enormous scientific talent, and there were significant discoveries…On the other hand, the science did little to improve the lives of the millions of people living with persistent mental distress.”
Paul John Scott @pauljohnscott
“Almost every measure of our collective mental health — rates of suicide, anxiety, depression, addiction deaths, psychiatric prescription use — went the wrong direction, even as access to services expanded greatly.”
Paul John Scott @pauljohnscott
“The antidepressant wars as this debate came to be known (it rages on today), also helped uncover the influence of industry money on academic psychiatry.”
Paul John Scott @pauljohnscott
“The pharmaceutical industry paid researchers at brand-name institutions to talk up drugs at seminars and conferences; it paid for “expert panels” to promote their use; and it often had outside firms write up the studies themselves, massaging the data.”
Paul John Scott @pauljohnscott
“This state of affairs made it virtually impossible to interpret psychiatric drug studies.”
Anon says
Suzanne quoted:
Add lying, deceitful ignorant medics in the mix and the ultra toxic mixture is a complete cess pit of injuries and deaths. The lies and inconsistent information, is a form of perfidious.and betrayal that can never be excused.
What is the difference between meds used unlawfully, murderers and guns?
They all have one thing in common – They kill however, the medical establishment do it all under the pretentious act of caring.
When you make someone suffer with relentless pain (prolonged unnecessary) and treat the sick and vulnerable as a means of generating cash ~ this is definitely not caring!
annie says
One could scarcely have been alive and conscious anywhere in the Western world any time in the past twenty-five years and not have been aware of a raging controversy surrounding antidepressants, suicide, and violence—a controversy that shows no sign of abating. During that same period, prescriptions for antidepressants have skyrocketed. So what is the story? Do these drugs drive people to suicide, or do they not? What about homicide? Are they addictive? Do they even help with depression? Author and researcher Patrick D. Hahn has examined the scientific literature and the trial transcripts. He’s listened to doctors and the patients. He’s cross-checked the facts. And now, he has reconstructed the story to tell the truth about how these drugs are made and sold.
https://samizdathealth.org/prescription-for-sorrow/
P.177
On 14 December 2012, Adam Peter Lanza, twenty, shot his mother four times in the head with a Savage Mark 11 .22 caliber bolt-action rifle, and then drove to Sandy Hook Elementary School which he had attended as a child, carrying with him a Sig Sauer P226 semi-automatic 9mm pistol, and a Bushmaster model XM 15-E2S semi-automatic rifle. He entered the building at approximately 9.30 AM, appearing calm, and proceeded to massacre twenty children and six school employees before killing himself with a single shot to the head with the Glock.
Able Child, a non-profit organization for parents, caregivers, and children’s rights, filed a Freedom of Information Act request for the release of Adam Lanza’s medical records. Patrick B. Kwanashie, Assistant Attorney General for the State of Connecticut, argued against the request at a hearing, claiming that the release of such information could “cause a lot of people to stop taking their medication”.
Who could argue with that?
susanne says
Mad in America SCIENCE, PSYCHIATRY AND SOCIAL JUSTICE
Mental Health Survival Kit, Chapter 2: Is Psychiatry Evidence Based? (Part 4)
Peter C. Gøtzsche, MDBy Peter C. Gøtzsche, MDMarch 29, 202132
1343
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Editor’s Note: Over the next several months, Mad in America will publish a serialized version of Peter Gøtzsche’s book, Mental Health Survival Kit and Withdrawal from Psychiatric Drugs. In this blog, he discusses the risk of suicide and other causes of death from psychiatric drugs, focusing on neuroleptics. Each Monday, a new section of the book will be published, and all chapters will be archived here……….
susanne says
Hi Anon – it wasn’t a quote though – I take responsibility for saying it myself . I Agree with your sentiments
Susanne
L says
FDA OKs first new ADHD drug in over a decade for children
https://medicalxpress.com/news/2021-04-fda-oks-adhd-drug-decade.amp
Viloxazine is a selective norepinephrine reuptake inhibitor (NRI)
Dr. David Healy says
Viloxazine is an ancient drug – previously marketed as an antidepressant.
D
mary H says
There we go then – another generation of parents coaxed to believe that their offspring ” need treating” so they can conform to the rigid rules of schooling only to find that they end up with zombies who can barely stay awake long enough to concentrate in lessons. Granted it gives the parents a little time to themselves – likewise the class teacher and the other pupils.
As a teacher, seeing a pupil transformed in this way is heart breaking. Give me the lively “ADHD” child any day – at least, then, you have a pupil who is usually interested in everything that you have planned for his day (usually are boys!). Your lesson planning needs to change massively to accommodate him but his rights to an education is as relevant as any other class member. Once on the slippery slope of prescribed drugs you so easily end up with a child who has no interest whatsoever in any activity that you may suggest. What, then, happens to that child’s access to education?
The side effects of this new/old “wonder drug” seem to be exactly the same as those for Ritalin or Cymbalta or the other brands already in use, so what is the point of this additional one ….oh yes, of course, it’s to make a profit for someone, somewhere.
annie says
recovery&renewal Retweeted
Offer exercise, therapy, acupuncture, or antidepressants for chronic primary pain, says NICE
https://www.bmj.com/content/373/bmj.n907.full?fbclid=IwAR0O-deFcuichC7MRqmwbWDpmTZO-9iCH-NSIdSW8v9EL7C0eL2y-e1PW9U
Chronic primary pain should be managed with exercise programmes, cognitive behavioural therapy, acceptance and commitment therapy, and acupuncture, NICE has said in guidance on the assessment and management of chronic pain.1
The antidepressants amitriptyline, citalopram, duloxetine, fluoxetine, paroxetine, or sertraline are the only drug treatments that should be offered to patients with chronic primary pain because evidence shows these may improve quality of life, pain, sleep, and psychological distress, even in the absence of depression, says NICE.
The Royal College of GPs backed the shift away from painkillers but cautioned that patients’ access to the new forms of treatment being recommended was variable.
https://www.theguardian.com/society/2021/apr/07/chronic-pain-sufferers-should-take-exercise-not-analgesics-says-nice
Prof Martin Marshall, the college’s chair, said: “Pain can cause untold misery for patients and their families. Chronic primary pain… can be challenging to manage in general practice, and the college has been calling for guidelines to address this for some time.
Phil Hickey @BigPhilHickey
What Is Tragedy? How Just 2 Days of Paxil Sent My Life Into Chaos
https://www.behaviorismandmentalhealth.com/2021/04/07/what-is-tragedy/
Personal Story from a reader
Once again, NICE and Royal College of GPs are getting their ‘lines’ crossed…
annie says
recovery&renewal @recover2renew
Cellen @Cellenhealth
The NICE chronic pain guidelines that were published today are a huge step forward. We are thrilled that members of our team contributed to the impactful guidelines!
@diarmuiddenneny
Check out our latest blog by Chris Oldfield:
https://www.cellenhealth.com/post/cellen-advisors-nice-guidelines-for-chronic-pain
‘The guidance suggests a wider view to treating chronic pain, moving away from only prescribing paracetamol, opioids and other common medications as there is limited evidence for their efficacy but a well-documented risk of harm and addiction.
Antidepressants may be beneficial in some patients, according to the evidence, but the benefits of these medications must be weighed up against potential harms before they are prescribed.’
Deconstructing that it is the Antidepressants that have a well-documented risk of harm and addiction ‘according to the evidence’ ought to take the ‘wind out of their sails’ with their chippy-chirpy back-to-front conclusions…
Justin Oxley says
I would probably stick to Omega 3 fish oil, Sulforaphane and Vitamin B6 for ADHD. I am a bit suspicious about some of these repurposed psychoactive drugs now.
https://youtu.be/FQjgsQ5G8ug
Justin Oxley says
I’ve had quite severe fatigue and depression just recently, living under a cloud feeling grotty isn’t much fun I’m rather irritable and less tolerance to stress. I was listening to this fella he appears to be quite sensible and knows what he is talking about someone started to push a loud vacuum cleaner about in the hallway stuff like that tends to make me a bit cross at the moment. Headphones are good.
https://youtu.be/hfMLP6I6FQM
susanne says
1
To:PaulChrisp-Director,CentreforGuidelines,NationalInstituteforHealthandCareExcellence(NICE)25.3.2021Dear Paul,I hope you and yours are safe and well.In this open letter, the International Institute for Psychiatric Drug Withdrawal, requests, for the second time, that NICE reverse itsdecision to exclude antipsychotic medications from the scope of the guidelines currently being written for‘Medicines Associated with Dependence or Withdrawal Symptoms: Safe Prescribing and Withdrawal Management for Adults’. Our ten reasons are:1.The first scientific paper1describing how patients can safely come off antipsychotic medication while minimising the risk of withdrawal effects,and risk of relapse,has just been published, this week. Professor David Taylor, the study’s seniorauthor and Professor of Psychopharmacology at King’s College London, has said:‘Antipsychotics induce long-lasting changes to nerve cells in the brain and they need to be withdrawn very slowly (and in a particular way) to allow time for the brain to re-set.’ 2Co-author,Professor Sir Robin Murray, Professor of Psychiatric Research at the Institute of Psychiatry, Psychology and Neuroscience, has commented: ‘Patients suddenly stop the medication by themselves with the result that they relapse. Much better that psychiatrists become expert in when and how to advise their patients to slowly reduce their antipsychotic.’ 2If suchesteemed psychiatrists recognise the urgent need for guidance, we believe that NICE shouldadjust its stance accordingly, in the interest of public safety.2.Other research published since your original decision has revealed the true extent of the problem. The first systematicreview and meta-analysis on the occurrence of withdrawal symptoms after antipsychotic discontinuation has found that ‘A weighted average of 53% individuals showed withdrawal symptoms after abrupt antipsychotic discontinuation and placebo substitution’.3A survey of antipsychotic users (the largest to date -832 from 30 countries) has found that 65% reported withdrawal effects when trying to stop, and that 51% of these described theirwithdrawal effects as ‘severe’.4Participants’comments included: “Withdrawal from the anti-psychotic was torturous andtook a very long time”“Withdrawal symptoms were always blamed on relapse of my ‘disease’” 5
Furthermore, as we have previously pointed out to NICE:3.Other bodies that supportinclusionof antipsychotic drugs include: all fourgroups participating in your own guideline scoping workshop, the All-Party Parliamentary Group for Prescribed Drug Dependence, and the mental health charity Mind. Even drug companies Grünenthal and Pfizersupport inclusion.4.NICE’s position that‘these medicines are prescribed for very specific defined conditions’ and therefore the issues aredealt with by NICE guidance forschizophrenia, is untenable.The current NICE guidance on schizophrenia (CG178) relating to safe stopping of antipsychotics only states“If withdrawing antipsychotic medication, undertake gradually and monitor regularly for signs and symptoms of relapse.” This is clearly inadequateto guide prescribers on how to stop these medications safely. We trust NICEwill urgentlyupdate this guidance also.5.Furthermore, antipsychotic drugs are increasingly prescribed ‘off label’, e.g. for insomnia and anxiety, and for ‘behavioural management’in prisons and care homes. Only around 50% of people prescribed antipsychoticsin the UK have a psychotic condition.6The care of the other 50% willnot be guided by the schizophrenia guidelineseven after you have updated them. 6.Antipsychotic drugs are one of the fastest growing classes of drugs being prescribed in England, increasing from 9.4 million prescriptions in 2015/2016 to 11 million prescriptions in 2019/2020.7.Antipsychotics are often prescribed against the person’s will.This creates aparticularlystrong duty to carefully consider withdrawal effects when making treatment decisions. 8.Withoutformal guidelines for withdrawal, long-term prescription of antipsychotics is common and can cause severe, sometimes dangerous,adverse effects. 9.We are grateful that you discussed theissue of the inclusion of antipsychotics with the Royal College of Psychiatrists, but weare disappointed that itdid not supportinclusion. We believe that over reliance on the viewsof the Collegemay have facilitated decades of denial and minimisation of the withdrawal effects of other psychiatric drugs, such as antidepressants. We greatly appreciate your recent update to NICE guidance regarding antidepressant withdrawal, given previous guidance did not represent the full scale of the problem, partly because of advice from the College.10.We realise that this, our second appeal against your original decision, comes to NICE late in terms of your timeline. There are, however, already two sets of guidelines7thatcould, along with this week’sHorowitz et al. paper1that prompted this second appeal, form the basis for the development of NICE guidelines for antipsychotic withdrawal.We hope thesewill be helpfulto youin the coming months.Antipsychotic withdrawal has been repeatedly described in the scientific literature since the 1970s. A range of rationales has been deployed, for nearly half a century now, to avoid taking action to safeguard the safety of the patients involved and to guide the doctors trying to help
them. Please now make a decision, based on the most recent research, toinclude antipsychotics in the‘Medicines Associated with Dependence or Withdrawal Symptoms’guidance.Warm regardsProfessor John ReadChair, International Institute for Psychiatric Drug Withdrawalwww.iipdw.
Justin Oxley says
I feel much better now I really do. I’m putting these new more aggressive mood swings and fatigue down to the switch to liquid Fluoxetine, the covid vaccine, T2DM and random irritating sounds producing unwanted perturbations in my cellular.resting membrane potentials. I tend to scatter taking supplements around at different times so as not to assault my stomach with too many unusual things simultaneously that appears to work. I’ll just have to put up with these peculiar mood conditions until they sort themselves out and start working properly. There must be alot of people that get afflicted with this sort of thing trying to withdraw from the ssris. I saw this news article I don’t think it would be very good if millions of people got themselves into a withdrawals state, I suppose given the numbers in the research it is an absolute certainty that things will worse.
https://www.einnews.com/pr_news/538073856/cchr-antidepressant-withdrawal-warning-vital-to-45m-americans-taking-the-drugs
Justin Oxley says
Computers are quite handy if you want to collect data from a large group of people using the Internet. Below Ben Eater describes how your keyboard talks to a cpu his series of videos are very good if you want to understand digital electronic. He uses the 74HC595 serial input parallel out shift register to examine the serial data set from a keyboard nicely, it is a custom serial protocol analyser. Ben then thinks about the best way to get the data into the cpu all using breadboard electronics, I like this sort of stuff but I am able to work on it better if my health is good. Computers don’t get hypoglycemic, post vaccine fatigue or ssri withdrawal symptoms so tend to be very dependable/reliable once you assign them a particular task.
https://youtu.be/7aXbh9VUB3U
https://youtu.be/w1SB9Ry8_Jg
Shift registers are quite good if you want to expand I/O to a cpu that employs serial I/O. For example if you own a huge greenhouse nursery where thousands of plants grow you might want to monitor the soil dampness for each plant and apply water when the plant needs it. You can expand a cpu input capacity using a 74HC165 parallel input serial output shift register to monitor a huge array of soil sensors that gathered data can be used to active pumps and valves to water the thirsty plants using a 74HC595 driving a relay board to power pumps when appropriate.
Justin Oxley says
I suppose what is happening with these mood swings must be along these sort of lines, this paper describes the mood state sodium pump hypothesis in bipolar illness. What can sort out my dysfunctional sodium pumps ?
https://austinpublishinggroup.com/depression-anxiety/fulltext/depression-v3-id1076.php
When I am in a good mood and can think clearly I can quite happily do the sorts of things that Ben Eater does with his breadboards but in a low mood condition dealing with anything or anyone becomes a very torturous endurance test I have a strong aversion to dealing with any external events/interruptions of any kind. Just let me lie down and leave me alone in peace until this nonsense goes please.
I’ve just had my morning coffee into which I add some powder supplements that appear to help pull me out of misey ready for a happier and more functional afternoon. In early evening.I will go for a Broccoli and Stilton soup with further supplements added. To get a decent night’s sleep I have found taking Lemon Balm, Hops, Rosemary and Chamomile capsules work well.
Does my supplement regime make things better than they were for me previously ? Things are certainly different, I had a period where I had a daily craving for alcohol and now I have a strong aversion to drinking any alcohol at any time. I don’t think I have had akathisia following the switch to Fluoxetine perhaps the Vitamin B6 has helped with that I have no way of knowing, I don’t think the.300mg B6 each day has done me any harm. I am still quite closed off from everything going on around me preferring to be in my own company most of the time, I expect I will be like that when I taper off the Fluoxetine which will.take quite a few months. At least I have a hope to.taper sensibly now that I have this liquid Fluoxetine and 1ml syringe the tiny solid tablets make safe tapering impossible.
Justin Oxley says
I would imagine e quite a few people experiencing ssri withdrawals would go looking for safe herbal supplements to alleviate their withdrawal distress, anxiolytics and others. This young lady appears to have reached similar conclusions for supplementation as I have however I would disagree with the use of St. John’s Wort and Milk Thistle based on papers I read which suggest those have statistical significancece in producing serotonin syndrome when combined with an ssri. It’s quite a minefield when you start to look into supplements there is great uncertainty in drug herbal contraindications so be careful out there, I feel simple clarity about safe withdrawal supplements is a good idea.
https://youtu.be/kUnbEWGPhkU