Disagreements over ‘diagnosis’: What should happen next?

Disagreements over ‘diagnosis’: What should happen next?

This Situation

The open secret that teaching staff can decide that the conclusions  of an ‘expert’ about a child’s specific difficulties are wrong, without following any agreed process, became well publicised over the last week.  So what ‘should’ we expect from the professionals that we entrust our children to every day?

Examples of the types of secenarios where a teacher decides the expert is wrong include:

  • NHS diagnoses (in our case multi-agency diagnosis of Asperger’s and the OT’s diagnosis of visual motor integration difficulties and sensory processing difficulties…..)
  • Private assessments.  In our case it was a comprehensive detailed learning assessment clearly carried out with a very high degree of integrity.  The ‘no win’ situations with regard to privately funded assessments include:
    • When the LA / School / Health Body won’t / can’t arrange (fund) an assessment and so the family pays for one.
    • When there are excessively long waits for assessment so parents pay for a one.
    • When comprehensive assessments are required and only basic screening offered by the school or local authority, so parents pay for one.
    • With regard to private reports parents are at times treated with suspicion and the report discounted because it is was privately commissioned.  It feels like a no win situation for these children and their families.
  • When brighter children are “not far enough behind” or those who mask / blend in / have developed exhausting coping mechanisms so that their difficulties are less visible to staff who can’t see what they are not trained to notice……

Frequently families are put into scenarios like these and are keen to understand or to help their child.  Often these children are talking about their difficulties and distress continuously and  no one is listening, aside from their parent who just want to help.

When there is disagreement over a diagnosis, conclusions or recommendations regarding a child, can we expect to experience professional behaviour, and can teachers expect that the demands placed on them are reasonable?

Professional behaviour – is it reasonable to expect the following?

  • That the person questioning the report should behave in an open and transparent way with regard to their concerns?
  • That the professional clearly articulates the specific reasons / their own specific observations or assessments which give rise to their disagreement?
  • That there is a published and agreed process to be followed in the case of a disagreement?  For example:
    • Parents are informed and given clearly articulated reasons for the disagreement.
    • The expert who carried out the assessment (or a representative of the team that carried it out) is contacted so that they can talk through their observations, assessments and conclusions.
    • In the rare case that there is no consensus reached that there is a locally agreed policy to follow.
  • that if the above process takes more than 4 weeks, then the recomendations made in the initial report should be implemented in the interim.
  • Is it reasonable to expect that someone with the title ‘professinal’ acts with a high degree of accountability with regards to allegations of unsafe practice?  That expectations of professionals with regard to this should be clear?  That if they believe that someone is effectively ‘selling diagnoses to meet some presumed demand by parents’ then they MUST follow a whistle blowing procedure?  That simply making potentially slanderous comments to each other and creating potentially libellous records is unacceptable?

Shouldn’t expectations should be made of teaching staff be reasonable?

  • That they can’t be knowledgeable in everything , that there is ‘stuff’ they don’t know?  And that that is OK, because there are experts out there who do know?
  • Is it reasonable to expect them to have access to the experts without excessive gateeeping and hurdles to jump over set by their own senior colleagues or those from outside the school?
  • That teachers should be supported when they are expected to implemented large scale change to their systems, time, admin etc?
  • That the public should remember that teachers are human too.  I don’t think they entered teaching to make life difficult for families and to cause harm to children.  I do think that some work within a pretty toxic culture though.
  • That it is not reasonable to expect teachers to be au fait with every new piece of research, the ins and outs of policy documents, but it is reasonable to expect them to listen to those who are – even if they happen to be a parent?

Adopting a model and expectations, such as these, would, I believe, lead to other improvements: 

  • better quality discussions about children between professionals would lead to improved learning  by all parties;
  • if it is the case that diagnoses are being offered up by those with poor integrity or practice, they would need to improve or may be less inclined to practice at all, if there is a system for professional challenge;
  • the quality of reports may improve, become more consistent and aligned to the needs of teachers – who are after all expected to implement the findings.

I don’t believe that it is OK in any circumstances to simply decide that another professional is wrong and to conclude, therefore, that their recommendations can be dismissed without following a published and agreed procedure.  Yet it happens frequently it seems.  For us, in each case, the experts have been proven right over time.  The teachers were wrong and thoroughly unprofessional to discount them out of hand.  Peter was denied the support he needed and the consequences of this were devastating.

With the title ‘professional’ comes responsibility.  I feel that the expectations laid out here are may be reasonable to have of someone who wishes to describe themselves as a ‘professional’.

Please click here to see a linky blog hop that bring peoples’ posts together: on SEN & labels, difficulties with getting diagnosed, pushy parents, private assessments, and other challenges in getting SEN support for children in schools.

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13 thoughts on “Disagreements over ‘diagnosis’: What should happen next?

  1. “That there is a published and agreed process to be followed in the case of a disagreement?”

    There absolutely shouldn’t even need to be. Teachers need to stop trying to comment outside their sphere of expertise and accept that they are not medically or clinically trained and that this behaviour is unethical, unprofessional and unacceptable. They don’t have the right to dispute diagnoses. Simple.

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  2. Perhaps they need ‘teaching’ a lesson. Perhaps next time a teacher does this, the parent writes to the professional/team that provided the diagnosis and copies in the teacher, saying airily that:

    “Dear Dr X, Mr/s Bloggs (class teacher), whose qualifications are: (list) has disputed your diagnosis of (child) and therefore I am somewhat confused and request that you write to Mr/s Bloggs to clarify on the basis of what you made the diagnosis. Terribly sorry to trouble you with this, but I am just a parent and when one professional challenges another the parent is caught in the middle and this is why I am seeking this clarification. Please copy me into further correspondence between yourself and Mr/s Bloggs.”

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  3. I love this blogpost. Clear and practical advice and suggestions – that’s what’s needed. When I was (a lot) younger, someone once said to me, ‘at the end of the day, all we have is the procedures’. As I get older and continue to navigate my way through various challenges, I couldn’t agree more.

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  4. I didn’t realise this was a phenomenon. It happened to my child 12 years ago, when an NHS clinical psychologist’s report, which included a summary of an NHS psychiatrist’s rejection that my son required Ritalin (the SENCO had said the school could not cope with my son unless he was sedated) was pushed back at the author sitting at one end of the case-conference table by my son’s classroom teacher sitting at the other end, with some indignant and very derogatory remarks about its conclusions. The seven page report, plus appendix, had been prepared following classroom observations, written submissions by school staff, three one hour clinical sessions with the psychologist and a further one hour session with a psychiatrist, which all took place over the course of six weeks. In attendance at the case conference were the head teacher, SENCO (the deputy head), the clinical psychologist, the class teacher, my son’s keyworker, the head of a Pupil Referral Unit which the school wanted to send my son to and myself. I was very pleased that I had the considerable experience of the Clinical psychologist and the head of the PRU to make all the arguments on behalf of my son that I was incapable of and of course to have had independent witnesses to such shocking behaviour. My son never had appropriate help whilst at school, despite getting a SEN which guaranteed him 25 hours intervention. Interestingly, despite two assessments by LEA appointed Educational Psychologists* prior to the Clinical Psychologist’s involvement, he was also not diagnosed as having dyspraxia and dyslexia until he was reassessed at university. Do LEAs even appoint EPs any longer? And if so how would it work if the school was an Academy and not under the LEA? Do parents now always have to fund independent professional assessments?
    * (the second took place because the head teacher stated it as ‘not being worth the paper it was written on’ an opinion independently verified by the subsequent EP and a family member of mine who is a CP so teacher’s rejections of professional reports not always unfounded!)

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  5. Three comments here based on my experience as both an NHS Consultant Psychiatrist and adoptive dad of three

    Firstly, it frustrates me when professionals who are not trained or qualified in diagnosis dismiss the opinions of those who are. Put bluntly whilst teachers may have a lot of experience with children, they do not have the understanding of the complexities involved in the process of “making a diagnosis” or in the criteria used to be able to dismiss a psychiatrist or psychologist’s report by just saying that they disagree with it. I rather suspect that there is a lack of appetite to follow through with the recommendations of any report and that this is behind their scepticism or disbelief, rather than any genuine clinical concerns with the accuracy of the diagnosis.

    Secondly, and almost oppositely, I have come across a situation where we were told that a private psychologist locally always wrote reports that supported what the parents wanted – I was always taught that any reports should be the same whichever “side” you were writing them for! As you can imagine our warning about going to this psychologist was that their reports would not be believed because of their perceived bias.

    Finally, it remains a struggle to get appropriate support within the educational system for our lovely, complex trio who collect diagnoses when what is really needed is a more focussed educational approach for them as individuals based on attachment friendly child centred principles rather than concentrating on targets. We’ve even been told that our eldest is over achieving for his abilities when he is towards the bottom of his classes because of our support! It should be teachers doing the educating not the arguing with evryone

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    1. Yes yes and yes! Brewing posts on ‘targets are for bullets and arrows, not for children’ and also of the issue of teachers having power without training or accountability when it comes to their sometimes plentiful views on medical matters….. thank you. So many issues….

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    2. “I rather suspect that there is a lack of appetite to follow through with the recommendations of any report and that this is behind their scepticism or disbelief, rather than any genuine clinical concerns with the accuracy of the diagnosis.”

      Undoubtedly in some cases, you are correct. But not all. Most things centre around resources, denying them to families deemed to be ‘managing’ rather key. Some teachers are simply ostrich’s and will bury their heads in the sand if they do not see it in school. As a psychiatrist you will be very aware of the autistic phenomenon of masking, which happens a lot in school, with “high-functioning” children (I won’t get into the whole issue of that term being an entire misnomer here). Teachers are not trained in autism, often like to assert their authority over parents (they are employed by the state after all…) and I suspect in some cases, also hate the idea that something they never picked up on as a professional, was picked up on by another professional. It irks them. Their egos cannot handle it so they dismiss it as they are embarrassed.

      Autistic masking is one of the biggest barrier to any professional accepting either a child is autistic, or an autistic child is struggling. Not just teachers, but clinicians too. The anxiety and struggles autistic children mask in schools are huge. But teachers are often so focused on meeting targets and everything else their job entails, a parent coming to them and saying little Johnny/Jilly is not coping, is an irritant to many of them. And then it’s the ego thing again, how very dare a mere parent question them, they might take it personally that the child is unable to speak up in school about their struggles and has to go home and tell mum. Mum is just the messenger boy.

      Regarding the private psychologist you describe, don’t you think it’s far more likely that parents seeking a private diagnosis have been let down by your NHS colleagues and that their children are still struggling so deeply in the face of misdiagnosis or missed diagnosis, that they go to such a private professional who then finally recognises what NHS colleagues have been denying, through either lack of ASD expertise or denial of resources. Do you know how many parents have reported being told their autistic child doesn’t need a diagnosis because they are coping in school? Never mind that the appearance of coping is just that, an appearance. Or they might be coping right at that moment but that does not mean they do not have the right to have a condition they have diagnosed. Or that a period of time when they might be coping does not mean they will continue to cope should their environment change. In what other medical realm would that be acceptable? Would you expect a diabetic who didn’t yet need insulin and could manage on tablets or dietary adjustments, to be denied a diagnosis of diabetes? Or a man with prostate cancer to be denied a diagnosis because it was slow growing and not yet at a life-threatening stage?

      Parents are almost always proven correct* when they report their child’s autism red flags. Sometimes it takes many years to finally get the diagnosis and all that time, their child was being failed and denied recognition and acceptance and the so-called early intervention that could have improved their outlook. So I suspect that the private psychologist who is providing these diagnosis would not stake his/her reputation on paid for fake diagnoses, it just would not be worth it. I suspect it’s far more likely that NHS colleagues, who often have stereotypical views of autism, who erroneously believe the ADOS-2 is the best thing since sliced bread (it’s only 77% clinically reliable in high-functioning because it was researched on prototypical autistic males – and likely significantly less so in females and those with PDA), who don’t stay up-to-date on the latest autism developments and who frequently have a parent blame attitude and love to misdiagnose attachment issues and send parents on parenting courses – have committed diagnostic negligence.

      This is why neurodevelopmental conditions are overrepresented in the care system. They are sometimes misdiagnosed with attachment disorder, and/or their parents falsely accused of abuse/neglect because professionals did not recognise the signs of their disorder, or the families were not provided support post-diagnosis when they did get the correct diagnosis and they failed to cope unsupported. Autistic children frequently have the connective tissue disorder EDS and this means they bruise easily, can dislocate easily or have easy bone breaks. I always wonder, when I hear people say they have adopted children with such conditions whether that has been the case with the children. Whether innocent birth families have had their children removed. There are shocking attitudes towards parents among professionals and a hysterical child protection approach, seeing ordinary parents as abusers and so many children as victims. Parents who fight for their children are falsely accused of emotional harm or MSBP/FII. The autism ignorance among professionals is rife and incredibly dangerous to families. NHS clinicians have a duty of care to all children with ASD to diagnose them correctly. And the educational approach you describe will never happen without diagnoses.

      * “Doctor Visits May Be Insufficient To Spot Autism”
      http://www.disabilityscoop.com/2015/01/13/doctor-insufficient-autism/19957/

      “Doctors Listen Up! Parents Can Spot Autism Long Before Diagnosis”
      https://www.autismspeaks.org/science/science-news/doctors-listen-parents-can-spot-autism-long-
      diagnosis

      “Listening to parents can help docs see early autism signs”
      http://sfari.org/news-and-opinion/blog/2015/listening-to-parents-can-help-docs-see-early-autism-signs

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