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Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Nov 28, 2017.

  1. JD_Lucas

    JD_Lucas

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    I can design a title page to make the information pack look as professional as possible (see attached example). Is this a good idea?

    If so, I can work on it now. Also, I presume the information will be collated into a Word document, can someone confirm this?

    Thanks
     

    Attached Files:

  2. Countrygirl

    Countrygirl Senior Member

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    This sounds really great!

    I think we may be getting to the point where it may be wise to take this off the main forum and gather a group together to assemble this.

    MEMum has been working on gathering documents while I have been dealing with other aspects and communications.

    @MEMum what would you like to do as the gathering of documents has been your assignment???
     
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  3. Alvin2

    Alvin2 If humans were rational...

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    Don't be afraid to keep this nuclear option in your back pocket if all else fails.
     
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  4. anni66

    anni66 mum to ME daughter

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    Fear is what has kept this from the public ( who would be outraged). Like the recent child abuse scandals, all it takes is someone prominent to come forward and the dam may break...
     
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  5. Countrygirl

    Countrygirl Senior Member

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    Just to keep you all updated:

    I have just finished making a draft document for Mum which I trust she will find useful to support her case.

    Hopefully, next year, MEMum, JD and others will improve on it and add further information. At the moment its contents are directed at the needs of this particulary case, but it can form the foundation of a larger document when we have more time to put one together.

    I have made it as attractive as possible and it is 18 A4 pages including more than 50 references. The first draft is now printed, covered with clear plastic and bound. I think it looks presentable and its multi colours makes its eye catching.

    TeamPR ............JD with his graphic design skills and MEMum will be able to improve on it next year when everyone has recovered from Christmas.
     
    Last edited: Dec 23, 2017
  6. Mary

    Mary Forum Support Assistant

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    :thumbsup::thumbsup:!!!!
     
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  7. Countrygirl

    Countrygirl Senior Member

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    Here is one of the pages to make it an eye catching document, something JD will be able to vastly improve:

    upload_2017-12-23_15-3-59.png
     
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  8. Countrygirl

    Countrygirl Senior Member

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    Just another update: I have now sent the zillioneth and twenty-first draft (kept me busy over Christmas) to Mum.

    I also want to say thank you to @char47 who has selflessly and with extraordinary patience acted as my proof reader. Char has also suggested some extra material which I have now added to the document. Thank you Char! Good stuff!

    The bottom line is: it looks pretty! :D It 's 21 full colour A4 pages are now bound between two clear plastic covers.

    Its aim is to give the paediatrican cause to pause and think before she carries out her planned action...if she will give it a glance.

    It anyone thinks it may help anyone else let me know and I can send a pdf.
     
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  9. anni66

    anni66 mum to ME daughter

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    Perhaps this should be a downloadable resource - very useful as most GPs and paediatricians go by NICE guidelines. If not here then perhaps via ME Action?
    Our paediatrician transposed references to CF and CFS quite often as foes GP. Wider family member is a geriatric consultant and considers exercise to be the most important treatment.
    Requests for referrals to immunology were met with quizzical looks - to be fair GP did try referral via infectious diseases ( which is technically what it historically came under) and was quickly turned down...
     
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  10. Mel9

    Mel9 Senior Member

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    Excellent idea!
     
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  11. Countrygirl

    Countrygirl Senior Member

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    Hi @anni66 Happy New Year! :):hug:

    The original plan was to send the Mum a few pages of helpful arguments specific to her case.

    I am very busy with other ME advocacy-related work, so initially couldn't allocate much energy-time to it; however, it was clear that we were running out of time as the deadline for the child to recover from/improve significantly (not sure if the paediatrician would accept 'improvement' alone) is January..............I don't know the exact date. I therefore decided that I needed to put a lot of time into it, but did not have the time to be very selective. I also thought I would try to design a booklet that would appeal to the eye and so increase the chances of a doctor flicking through it. I don't have any fancy software to do this, and so someone else with professional design skills and appropraite software, someone like JD Lucas, could improve on it.

    There was clearly not sufficient time to produce a comprehensive document, so my aim is to present sufficient evidence/information/opinions of respected and experienced clinicians/scientists that would make the paediatrician realise that GET and certainly rigorous/intensive exercise therapy is not only inappropriate, but downright dangerous.

    I have also added a few paragraphs about the precedent set by the Montgomery case in 2016 which makes it the legal responsibility of the doctor to warn the patient/parent of any potential negative consequences of any treatment. Failure to do that, even if it is the consequences of ignorance, is not accepted in law as justification for not informing the parent of possible detrimental side-effects. In this case for example, a failure to warn the family that GET or intensive exercise can lead to severe and long-term/permanent deterioration would place the doctor in a legally risky position. It the child becomes more severe as a result of this recommended management/treatment plan, the doctor cannot use ignorance of the potential risk as justification for failing to inform the patient of the dangers. She will be liable in law and therefore can in theory be sued.

    The urgency in this case is to ensure that there is sufficient doubt about the wisdom of her proposed course of action to allow the parent to reasonably refuse to agree to the hospitalisation and any course of GET. We are forced to work with the NICE guidelines here which are hopelessly inadequate/downright dangerous, so we are somewhat hamstrung in making a cast-iron case from NHS-officail channels, so I have had to appeal to evidence outside the UK, which doesn't impress UK doctors and evidence within the UK which is not considered of great weight, but it is all we have and commonsense dictates that it strongly 'suggests' that the proposed course of treatment is highly risky and there is no evidence that proves it is efficacious. ..........while the evidence that has been accepted is now considered to be questionable and is being challenged.

    We also do have the evidence of one particular child who after being forced through this treatment was left effectively paralysed and remained very sick for a few years. Others we hear have walked into the hospital and, after being subjected to the proposed treatment have been stretchered out/been reduced to using a wheelchair. However, this level of evidence is ignored and the parents are too afraid to allow their cases to be used as they fear, with good reason, retribution by the medical profession for complaining about the harm that has been done. When this has been followed through in the past, the complaint is rejected and any useful care that has been in place has been withdrawn as a 'punishment' for complaining.

    I think the booklet presents adequate evidence for the Mum to use in this case and, hopefully, to share with the paediatrician; however, if it is to be used in a wider context, I think other 'improved'/more weighty evidence could be presented if we had more time. It does contain the most important section of all: GET is inappropriate/dangerous/ harmful.

    There are more than 50 references to academic papers and links to web sites for the doctor to follow through and research for herself.

    I have also added an article written by Dr Bell on the prognosis of ME. Based on his 30 years of experience he has concuded that even after many years/decades, adults who became ill as children still have to lead a very restricted life style in order to control symptoms. I included this as the paediatrician thinks the child should have recovered in a few months.

    I am happy to give anyone the pdf of the 21- A4 document, but my suggestion is that it forms the basis of a new extended booklet now there is no time limit. This would need a group to work on it and find ways of improving it now there is the time to do so.

    I am advised not to place the pdf here on the open forum as it would link to private identifiable information.

    The ongoing concern here is that the paediatrician won't read it and pursue the proposed 'treatment'. The doctor can appeal to the same law that is used to ensure that Jehovah Witnesses cannot prevent their children receiving a blood transfusion if it is needed to save their lives. Here, if the paediatrician is happy to be led by Bath, she can use those powers to take the child and inflict a course of intensive inpatient therapy against the wishes of the patient and family. She has the law on her side at this point, but not if she fails to warn of the potential consequences, but, by that time, it is too late. The damage will be done. It is at this point too that a diagnosis of Pervasive Refusal Syndrome is made (or PAWS..........Pervasive Arousal Withdrawal Syndrome). As you will have seen from a previous post, EC has now written diagnostic guidelines for this in which she claims that PEM is a key diagnostic symptom of PRS (unbelievably). I also have evidence that paediatricians are informed that 'severe illness is not on the ME spectrum'...................so I think I am correct in saying that when a child deteriorates into severe ME as a result of inappropriate treatment, the paediatrician can now appeal to the new guidelines for PRS, observe the consequences of severe PEM caused by the treatment, and award a diagnosis of PRS/PAWS..............a useful get-out cause for medical abuse and a way of avoiding legal consequences.

    It is never simple and straightforward.
     
    Last edited: Jan 2, 2018
  12. anni66

    anni66 mum to ME daughter

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    It is never simple. Sad that the international paediatric primer dies not have more influence.It does mention that children can have severe illness and also the infrequency of PRS.
    I think a general scientifically based info leaflet would be a good resource to be able to access. Perhaps as you say more suited to a future project.
    I sincerely hope that the leaflet has the desired effect.
     
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  13. Countrygirl

    Countrygirl Senior Member

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    I have given links to the primer and the ICC guidelines plus links to Tymes Trust, The MEA, IiME and, of course, the best ME forum on the planet: PR. :):thumbsup: The paediatrician can follow the links and access a wealth of quality information......if they have a mind to.
     
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  14. anni66

    anni66 mum to ME daughter

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    And that is the main stumbling block.
    I had forwarded a request for referral to Dr Bansal complete with link to the liME conference video explaining his theory. Paediatrician apologised for not watching it ( link blocked on NHS system), and would not refer as Bansal " does not follow NICE guidelines". The aetiology of his theory fits our experience, and he " gets" things far more than other docs.
    I have however managed to get GP to write letter seeking treatment advice with a pitted history and test results. Whether this will have any effect is another matter.
     
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  15. Countrygirl

    Countrygirl Senior Member

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    That is really frustrating................I am sorry to hear that you are being blocked from seeing Dr Bansal. Do you know what the doctor means by not following the NICE guidelines. Does he think that they insist that CBT and GET must be implemented? There is some wriggle room here. They say:

    If he doesn't insist on a patient following his prefered treatment model an argument can be made that he does indeed follow the guidlines. Some doctors in the UK manage to prescribe antiretrovirals and still can defend the argument that they are staying within the guidelines.

    I think I would challenge the doctor to explain what he means by his statement.

    Interesting that a link to IiME's video. Do we know what other good sources of ME information is blocked by the NHS? Nothing like censorship.
     
    Last edited: Jan 2, 2018
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  16. anni66

    anni66 mum to ME daughter

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    Tried the antiviral suggestion. Peadiatrician "sees good results" with pacing and GET. She really dosn' t know much else/ want to deviate.
    Strong indications of potential herpes viruses damage ( phase 2 liver detox drug reactions from meds with benzoate bleached ingredients, salicylates and synthetic vit E) and near constant lymph gland and flu symptoms
    H pylori can also be indicative of liver dysfunction- but no joy with any further testing/exploration of these as we all know that CBT and GET can deal with everything.
    We have just been discharged from her care as now " adult", and she felt there was nothing more she could offer.
    Luckily our GP is empathetic.
     
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  17. arboretum

    arboretum

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    I think it would be better if an information pack was put together or had strong input from actual doctors or researchers (and multiple ones, so a single one doesn't just put down their personal opinion). I think a doctor would be able to tell if such an information pack was put together by lay people, and that would probably make him/her take CFS even less seriously.

    It would also be worthwhile investigating some further details of the inpatient program. Many of these inpatient programs for CFS focus strongly on pacing and activity management, and things like sleep cycles and any possible mood disorders. And then they actually apply GET in such a way that it doesn't cause the patient to crash or get worse (ie. they don't make the patient do any more exercise than they are able to do).

    That may not be helpful, but if they're a respectable program, it shouldn't cause any harm. If they do seem to be applying GET to the point of causing harm, or think CFS is psychiatric, that isn't in line with the current medical consensus, or how GET, as it currently is seen, is supposed to be applied. If that's the case, you should raise concerns about that to doctors that do try to apply GET without causing harm and hopefully they'll have a chat about that with the program. (They probably wouldn't listen to other doctors that don't like GET at all)
     
  18. Countrygirl

    Countrygirl Senior Member

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    Just to say I have heard from Mum who says after the Christmas break she now feels ready for the fight!:):thumbsup:
     
  19. Countrygirl

    Countrygirl Senior Member

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    Ideally, it would be better if doctors would put together a booklet, but they haven't.

    I have taken care to only quote leading clinicians and scientists and the UK official guidelines as well as English law in the booklet. There is no patient input there. At this stage, I think that is the best we can do.

    GET is never appropriate for an ME patient, given the scientific evidence that we have. We can't continuously increase our activity as we will always crash when we hit our own ceiling.

    Someone has just flagged up an even more concerning case too. :bang-head:
     
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  20. arboretum

    arboretum

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    I think having a doctor look over the final version and give some comments, at least, would be a good idea.

    That isn't actually how GET is applied in most respectable clinics nowadays, though. Most respectable clinicians now apply GET by making you slowly increase exercise, but only if you're able to do so without crashing or negative consequences. There'd be plenty of ones that don't do that, but my understanding is that among most clinicians familiar with CFS, that's how they do it. I've spoken to a number of doctors and researchers; they all apply GET with pacing and avoiding crashing, and they've all made it out that that's how it's generally done.
     
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