ADHD is a three fold situation – Biology v/s Psychology v/s Environment combined.

5EA4D9B7-0D60-4C76-B426-1A8BFD7460F6https://www.psychologytoday.com/us/blog/feeling-our-way/201804/how-think-about-adhd

In response to the article (link above) entitled … How to think about ADHD by Michael Karson.

Whilst I agree with the bulk of this article, I’m not entirely convinced on the meds point personally. I would argue that if people are not experiencing effects that are perhaps best described as being potentially ‘life changing’ then is the diagnoses of ADHD actually a correct one? In all honesty, it is  a very big and somewhat sweeping statement to make on behalf of the ADHD population, to say that meds simply stop working. Where does this information originate from? Is there some research out there that ADHDers themselves are completely unaware of?

In addition, I think there is a much larger emphasis being placed on the environmental aspects in this article – perhaps too much, and not enough on the neurology involved in ADHD.

There is much talk about excessive demands making it difficult but I would argue that for ADHDers it’s actually simple demands that present as a tricky problem right from the very start. It is only when lots of these repeated problems cumulate together, do they then become one heck of a giant sized problem that results in system overload – for all to see. The fact that no one witnessed any of this beforehand, does not mean that it didn’t already present as a problem to the ADHDer internally.

The significant thing about these little problems is that they are each required as part of human functioning in everyday life. Therefore it presents quite an extreme problem in that ADHDers must somehow seek a way around either dealing with it or trying to avoid such. Hence much of the impulsive and/or inattentive behaviours that are associated with this disorder. 

It’s a little like Ned Hallowell’s description of the eye glasses – used to improve vision. It would not be appropriate to say that a person who is short sighted must avoid all areas that could present as too much of a challenge or that the environment itself should be cranked up on colour or texture or even size, in order for the short sighted person to be able to absorb the ‘necessary information’ and subsequently see more easily. 

Being short sighted can impact greatly on a persons life without the added benefit of eye glasses. It may appear small to the rest of the world but to the person experiencing the problem, it is very real and actually quite huge when applied to daily life. It really is not the same as having a short term eye infection or perhaps working in an environment with a defective light. 

We can’t just say that the changes in society have resulted in the ADHD traits being brought to life. No matter where you are in the world, or what time frame you may have been born in, you will always be required to ‘learn’ in order to grow. For learning to take place, a person will be required to pay attention, recall information and then apply that knowledge accordingly.

However, the ADHD brain works in a different way due to problems associated with development and functioning. Information is therefore acquired through alternative measures. ADHDers must engage many of the bodies senses in order to experience real learning. This means that the brain is already on full alert – in constant need of stimulation to help facilitate absorption. The flip side of this, being a brain blow out due to overload and the subsequent overwhelming urge to switch off – time out, escape, shut down.

This is where the motivational factors then come into play. Do I really want to endure all the pain, stress and suffering of climbing up to the top of that mountain – whilst others pass me by on the ski lift, just so I can feel good – momentarily?

This is the internal battle that exists inside of the ADHD brain, regardless of the outer world. Granted, symptoms can be made better or worse depending upon human v/s environmental interactions, but still ADHD goes on.

This article appears to simplify this aspect of ADHD for me. There is much talk of ADHD diagnoses and medication in the negative sense but did anyone ever stop to consider the number of ADHD success stories that are fast coming to light as the years roll by? Is diagnoses and medication really such a bad thing? Are we perhaps enabling the vast majority of ADHDers to finally reach their true potential for the first time?

On a separate note, the article makes reference to the suggestion that boys are innately more active than girls.

In actual fact, research shows that there is little difference in the activity levels and physical behaviours of either sexes during toddlerhood. However, a significant change takes place around the age of 4 when children are socialised into school environments and subsequently assigned to their gender groups.

From this point on, females are very much discouraged from acting out in physical ways, as it is seen as a violation to the gender norms. Whereas boys are encouraged through play and sports to express such characteristics, in line with our perception of the male stereotype.

Just as the environment has somewhat presented us with an issue in terms of ADHD, it has equally done so in relation to gender. Hence the reasons partly why boys and girls with ADHD present so differently 👍🏻

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ADHD in Education – One Parent, Three Perspectives.

My journey into the world of ADHD began with my 9yr old son receiving a diagnosis in 2001. He was classed as a typical text book hyperactive/impulsive combined ADHD type. He was forever being excluded from school for playing the class clown, fighting off bullies or arguing with his Teachers. At one point, I was sitting in my car outside of his high school almost every single evening – alongside my other 3 children, whilst my son attended detention for matters relating to poor organisation and failing to comply with instructions.

Bart Simpson

A teacher once described my son as a ‘lovely little boy with big problems.’ Another teacher stated that he was like a ‘ticking time bomb waiting to go off.’ School staff had initially told me that they were very experienced with ADHD and that my son would receive adequate levels of support. However, following his first year the SEN team had said that they had never experienced a child quite like my son before. At that time, he was constantly running out of school or being sent home because he was struggling to cope on a daily basis. Despite having an SEN statement which included 20 hours of support, his ADHD symptoms continued to cause big problems: making it difficult for him to access learning. By Year 9, the school had placed him on a part-time schedule, indefinitely – lasting almost two years. This subsequently resulted in me having to leave a full time position of employment, in order to play therapist to my child at home.

During his schooling, my son had never once landed a lead role or had his creative works acknowledged despite demonstrating real talent and flare in the arts. Whenever residential trips or days out would arise, he would automatically be excluded – not as a result of disruptive behaviour but simply because he was viewed as an apparent safety risk. Initially my son would get very upset over this kind of treatment but throughout time it soon became his normality. As a parent, I have witnessed my son deteriorate and slowly disengage from learning whilst problems concerning his Mental Health started to soar uncontrollably.


My daughter on the other hand, was a completely different kettle of fish. She was what you would refer to as the classic inattentive type – a daydreaming space cadet. She was always either running late or last minute. She forgot things, people, places and experiences. She had no concept of time and she was unaware of potential dangers: making her particularly vulnerable. In 2003, following a CAMHS assessment, I was informed that my daughter did not meet the criteria for ADHD or ASD as she showed no apparent signs in school.

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Over time her self-esteem and confidence began to crumble. She struggled to fit in with her peers and was often excluded from social gatherings. My daughter soon learned that no amount of studying ever seemed to improve her academic ability which subsequently resulted in Mental Health difficulties due to a constant feeling of failure. At age 14, I was again told that she did not meet the criteria for neurodevelopmental disorders as the school did not share the same concerns. Meanwhile, she continued to struggle with memory, extreme fatigue, sensory processing, emotional regulation, difficulties socialising, organisation, time and general day to day functioning. By the end of Year 11, she had also failed to achieve the GCSE grades previously predicted by her subject teachers. This proved to be a huge shock as we had been repeatedly informed throughout her years of schooling that she was a very able student.

Following several years of desperate struggle, my daughter was eventually diagnosed with ADHD at the age of 18.


In 2006 my youngest daughter was diagnosed with an autoimmune disease aged 18 months. This resulted in her having a high level of need around medical care on a daily basis. In 2011 she also began presenting with ADHD type symptoms – forgetfulness, lack of concentration, disorganisation and emotional difficulties. Following a QB assessment in 2012 which identified high levels of inattention (92%), impulsivity (86%) and 68% hyperactivity, I was told that she did not meet the diagnostic criteria as her symptoms were not evident within the school setting.

After transferring to high school in 2015, my daughter was repeatedly placed at risk: concerning her medical needs, as she was unable to manage independently due to difficulties associated with working memory and information processing. She had also experienced repeated illness [lost learning]: many episodes requiring emergency intervention as a result of forgotten treatments or incorrect dosage. Over time, she began engaging in self harming behaviours and had experienced suicidal thoughts. She was also fast becoming a school refuser – with attendance at 75% and she had experienced increased episodes of aggression. She was struggling to master friendships and she was finding day to day life expectations extremely difficult to maintain.

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In 2016, following a second ADHD assessment – scoring 99% inattention, 99% impulsivity and 82% hyperactivity, I was again informed that my daughter did not meet the criteria for diagnoses as the school reports proved inconclusive: showing mixed reviews. After a repeated number of denied requests to undergo an SEN assessment via school, I applied for an EHCP. This was refused by the LA on the grounds that the school considered my daughter needs as solely medical, as opposed to learning. However, in the year since achieving level 5 SATS results, she had regressed in the core subject areas and had failed to progress in others.

I went on to appeal the LA’s decision which ultimately resulted in a yearlong process of having to build a case history. A tribunal court later ruled in my favour, agreeing that my daughter did indeed have SEN and disability which required that she have access to additional support in school. However, my daughter’s situation had deteriorated to such an extent that I was then forced to remove her from the school in question. As a result, she was subsequently left without any educational provision whatsoever for a further 5 months. This experience unfortunately resulted in me having to resign again from another long standing position of employment, in order to care for and home-educate my child.

After starting in a new school provision that includes adequate levels of support, my daughter has since undergone a re-assessment for ADHD and now has a formal diagnoses together with treatments – aged 13 yrs. This follows a 7 year battle with schools to have such difficulties simply observed, recognised and understood. Despite my continuous efforts to communicate information as both a parent and a Children’s Practitioner – specialising in ADHD, I have experienced little by way of acknowledgement but a whole lot in terms of ignorance and professional egos. Unfortunately, this has come at a great cost to my family.

Thankfully these experiences have only served to make us stronger as future challengers – with myself and two of my children [above] currently working across the fields of research, education and psychology, to help bring about much needed change for children and families struggling with ADHD.

Author – Sharyn Travers 25/03/18

The ones who are crazy enough to think they can change the world …                       are the ones who do (Steve Jobs).

How Effective Is Current Practitioner Training In Meeting The Holistic Needs Of Children With ADHD In Schools?

An Exploratory Study conducted by Sharyn Travers

Attention Deficit Hyperactivity Disorder (ADHD) affects between 3% and 9% of school aged children in the UK. It is characterised by the core symptoms of ‘hyperactivity, impulsivity and inattention.’ The symptoms of ADHD are described as both chronic and pervasive; resulting in profound impairments to educational and social functioning: across multiple settings, causing adverse effects for the sufferer, their families, peers and teachers. Due to a growing body of scientific evidence that supports the brain development correlations, ADHD was moved from the category of ‘Behavioural Disorders’ in the DSM-5 (2013) and instead placed within the new category of Neurodevelopmental Disorders: affecting the way in which the brain grows and develops. As a result, brain functioning is disrupted and the ADHD brain struggles to process information. By definition, ADHD is therefore classified as a Specific Learning Difficulty – according to the British Dyslexia Association.

International research into the nature of ADHD continues to focus on areas such as; cognition, neurobiology and genetics. However, evidence suggests that ADHD is not the result of a single cause but rather an interplay between ‘… genetics, the brain and psychosocial factors that influence behaviours.’ Therefore, children who are biologically predisposed to developing ADHD as a result of family genetics, will experience hyperactive, impulsive and inattentive symptoms that are intensified by environments that are ‘rigid and unresponsive’ to their needs. The way in which a child (with ADHD) interacts with his/her environment will ultimately determine the extent to which their development and functioning (ADHD symptoms) is impacted. Studies show that practitioners who possess ‘low level knowledge’ or ‘insufficient understanding’ of ADHD, are highly likely to exacerbate the problems associated with the condition. Therefore, the knowledge and attitudes of practitioners in relation to ADHD is significantly important in determining the future outcomes for children with ADHD, either positively or negatively so.

Background to the Research

Sharyn is a qualified Child & Youth Practitioner – Specialising in Behavioural Analysis & Intervention. Over a 20 year span, she has worked across Primary and Secondary Education, also within Outreach Response Teams, Pupil Referral Units and Youth Work Provisions. Sharyn’s personal interest in ADHD began as a result of a close family member being diagnosed with the condition back in 2001, which subsequently provided her with lots of first-hand experience.

Professionally, her role involves working directly with children and young people who demonstrate challenging behaviour, many of whom are diagnosed with ADHD. Much of her work is focused around self-regulation in response to behavioural problems that are regularly reported through schools. In her experience, Sharyn has found that many schools have invested in some ADHD training and here practitioners seem to have acquired knowledge and skills which are geared towards disruptive behaviours particularly.

However, Sharyn comments “I have observed many children with ADHD who appear to have sufficient levels of intelligence but who struggle to access learning through the curriculum. I have also witnessed high levels of frustration in these children, as a direct result of those difficulties.” Through research, Sharyn believes that a lack of knowledge in relation to ADHD as a Neurodevelopmental Disorder – involving both behavioural and cognitive dysfunction, exists and that learning opportunities for children with ADHD are potentially affected as a result.

In 2016, Sharyn conducted a small scale Action Research project as part of an undergraduate dissertation – BA Hons in Childhood Studies at Manchester Metropolitan University.

The Research Aims:

  1. To explore knowledge and understanding of practitioners in relation to ADHD.
  2. To examine current approaches used by practitioners to manage ADHD in schools.
  3. To explore the biopsychosocial paradigm as an alternative approach towards ADHD.

The study consisted of 28 participants who work within education to support children with ADHD. It began with a systemic literature review that was supported by anonymous questionnaires and separate 1:1 interviews. Sharyn designed and delivered a training workshop on ADHD: as a Neurodevelopmental Disorder in accordance with the DSM 5: bringing up to date the cognitive deficits concerning executive functioning and emotional regulation. A more sophisticated ‘Bio-psycho-social’ model of ADHD was also introduced. Sharyn then interviewed a selection of participants and got them to follow up with a questionnaire about the training they had received and how it compared to the knowledge of ADHD that they already had.

 Study Findings

  1. The knowledge and understanding of practitioners in relation to ADHD.

The study showed that the overall knowledge of ADHD as a Neurodevelopmental Disorder was poor, with only 10% of the group correctly identifying this. The majority consensus demonstrated that ADHD was either perceived as a Mental Health Condition or a Behavioural Disorder, with 89% of the participants believing that disruptive behaviour was a central component to an ADHD diagnoses. Many participants stated that they were somewhat aware of the cognitive deficits, with 75% agreeing that ADHD appeared to affect learning. However, only 46% of the participants considered ADHD as a Specific Learning Difficulty (SpLD), which suggests that impaired learning is perhaps understood as a consequence to problematic behaviour.

The concern here is that practitioners may be at risk of wrongly labelling children who are disruptive: as ADHD, whilst completely overlooking children who are less or non-disruptive: ADHD Inattentive types, both of which could impact negatively upon growth and development, and potentially result in mental health difficulties.

Of the group sample, 64% agreed that children with ADHD are considerably disadvantaged compared to their peers in schools. The study showed that children with ADHD experience higher levels of increased failure – 79% agreed response, and negative treatment – 71% agreed response. Only 28% of participants felt that children with ADHD receive appropriate levels of learning/behavioural support in schools.

The Education Act (1996), states that schools must make special educational provision for pupils whose behaviour related learning difficulties (ADHD) calls for such. The Children and Families Act (2014) also states that Local Authorities have a duty to identify learning difficulties through formal educational assessments. In addition, schools are required to make appropriate reasonable adjustments for children with ADHD, in accordance with disability guidelines.

The study therefore highlights that children with ADHD may not be receiving their full entitlement, in accordance with the Special Educational Needs and Disability (SEND) Code of Practice, due a potential lack of ADHD knowledge, on the part of practitioners.

  1. The current approach used to manage children with ADHD in the school environment.

Data findings suggest that previous ADHD training had likely stemmed from a medical background, as the knowledge of participants focused predominantly around behaviours. The overall view of the group sample was that training had previously been poor and misleading. 100% of participants felt that such training; under the medical model, was restricting to their practice as it failed to offer them scope for learning or development.

             “We need training that will help us to better understand the effects of ADHD and strategies that we can actually work with”                              (Participants, 2016).

Although current ADHD training in schools is sufficient – in accordance with National Health Guidelines, the study found that it was of poor quality to ‘practitioners in education.’ Previous ADHD training had failed to provide them with key information concerning the neurological and socio-cultural aspects, which subsequently denied them of opportunities to exploit the educational potential and improve upon current approaches for ADHD across schools.

Therefore, ADHD training – in relation to the study, was deemed as ineffective, given that it fails to meet the holistic needs of children with ADHD.

  1. The Biopsychosocial Paradigm: as an alternate approach towards ADHD in Education.
Biopsychosocial Approach
The Biopsychosocial Model of ADHD – courtesy of S. Travers

This approach uses a holistic perspective that focuses upon a range of biological, psychological, and sociological/cultural influences and subsequent interactions, that impact upon human development and functioning. The biopsychosocial model of ADHD works on the premise that genetic inheritance (nature) and environmental factors (nurture) are continuously interacting as part of a dynamic and fluid process.

  • Nature – Children born with ADHD will undoubtedly impact upon their surroundings – resulting in additional stress factors for family members, teachers, etc.
  • Nurture – Children with ADHD regularly experience high levels of negativity from adults, where they often attract labels that are unfavourable and which can impact affect self-esteem and subsequent development.
  • Outcome – Children who experience persistent levels of low self-esteem tend to develop a negative perception of self: believing that they are ‘not good at things’ or that ‘situations will work out badly for them.’

Children who fail to have their self-esteem needs met are ultimately denied the opportunity to achieve in line with their real potential. It is therefore vital that practitioners understand the biological and psychological correlations of ADHD in order to improve upon teacher-student relationships, educational engagement and social functioning.

Of the sample group, 100% agreed that the training workshop had made them more aware of their own practice in terms of meeting the needs of children with ADHD. All of the participants involved, each stated that learning about ADHD through: (a) Biological, (b) Psychological and (c) Sociological/Cultural perspectives, had helped to improve their overall understanding of ADHD. The general consensus was that this approach could offer new ways of working such as ‘curriculum implementation and organisational arrangements’ to accommodate learning difference by enabling children to participate in ways that best suit their [innate] needs.

The study identified a 57% increase in practitioner knowledge of ADHD.

Other key findings:

  • The importance of viewing ADHD as a Neurodevelopmental Disorder: where cognitive deficits concerning executive functioning and emotional regulation are recognised.
  • The importance of Cognitive Assessments to determine the extent of deficits upon diagnoses and assist in the development of support systems for improved learning.
  • The importance of improving practitioner knowledge of ADHD as a Neurodevelopmental Disorder to aid identification of ADHD in school children – in view of ADHD Inattentive Types.
  • The importance of placing ADHD in the category of ‘cognition and learning’ alongside other SpLD’s as part of the SEND document that informs school practice.

‘Our school years shape the rest of our lives – negatively so for children whose ADHD is unrecognised and/or ignored. But paradoxically – although school is the place here the most damage is done – it is also the place where we can make the most difference to these children’s lives with the right interventions’                                                                                                                                                                               (ADDISS, 2005). 

           

                                    

 

Author: Sharyn Travers (February, 2018)

Parent v/s Professionals – A fight for the protection of my child.

An Open Letter to Theresa May

I am writing as the Mother of a 13yr old child who has been repeatedly let down by a system that is supposedly designed to protect her. After researching several serious case reviews, as part of my own degree in Childhood Studies, I have found myself asking the following …

‘Why must children die before people actually sit up and really listen?’

As the UK government leader responsible for decision-making and policy, and as a person with Type 1 Diabetes, I hope that this story will serve as a personal reminder in bringing your attention to the shocking state of Children’s Services and the crucial need for fundamental change.

My daughter [Child A] was diagnosed with Type 1 Diabetes at the age of 1. It started with an insatiable thirst, increased urination and a sudden significant drop in weight. Having experienced diabetes myself during pregnancy, I took [Child A] to the GP as a matter of urgency but was told to return a few days later for an appointment. Had I not insisted on a more immediate response, then [Child A] may not have been alive today, given that her blood glucose levels were dangerously high.

Type 1 Diabetes is a chronic disease that develops over hours/days and can quickly lead to ‘… serious health problems, including Diabetic Ketoacidosis, which can result in a fatal coma’ if left untreated (Diabetes UK, 2018). Type 1 Diabetes creates a life-long impact upon individuals and their families. It currently affects about 400,000 individuals in the UK and 29,000 of those are children. Those diagnosed are required to administer insulin several times a day in order to stay alive (JDRF, 2018). Factors such as stress, hormones, growth, physical activity, medications, illness and fatigue can make control extremely difficult (Diabetes.co.uk, 2018). Type 1 Diabetes for many families consists of a never-ending vigilance to ensure blood glucose levels are contained within safe parameters (Anderson & Brackett, 2005). NICE (2015) guidelines recommend an optimal range of 4–7mmol (Diabetes UK, 2018).

  • Hypoglycaemia (below 4mmol) involves symptoms such as; pale complexion, increased hunger, irritability, anxiety, palpitations and weakness. If Hypoglycaemia is not treated immediately, it can lead to convulsions, loss of consciousness, and coma.
  • Hyperglycaemia (above 7mmol) involves symptoms such as; increased thirst, nausea, headache, blurred vision and fatigue. Hyperglycaemia is potentially dangerous if blood sugar levels become very high or stay high for long periods (NHS, 2015).
  • Insulin is lifesaving medication when prescribed and administered appropriately but also has the potential to cause significant harm (Diabetes Care, 2011).

I first raised concerns regarding [Child A] – aged 7, as she had started to experience some emotional difficulties at home. [Child A] had also expressed a reluctance towards attending school – stating that it was ‘too much for her brain to cope with.’ It soon became evident that [Child A] was struggling to manage everyday tasks independently, i.e. morning/evening routines, diabetes self-care; remembering to change needles, wash hands, test bloods and report to staff in school. The Children and Adolescent Mental Health Services (CAMHS) assessed [Child A] at my request and identified the following difficulties: emotional regulation, separation anxiety, attachment, with high inattention and elevated levels of impulsivity. Professionals concluded that such factors were likely the result of having developed Type 1 Diabetes at an early age – causing an anxious temperament and over-dependence. [Child A] underwent a 6 week intervention programme via school for Anxiety.

In August 2015, [Child A] – aged 11yrs, had a QB assessment (FDA-cleared device used for assessing the core symptoms of ADHD: hyperactivity, inattention and impulsivity), which showed acute levels of inattention and impulsivity – both at 99%. The Children’s Diabetes Team had also established that [Child A] would require additional support in order to achieve safe and optimal blood glucose levels.

Upon transition to high school, I was assured that [Child A] would undergo an Educational Psychologist [EP] assessment and that all staff would be made fully aware of the complexities involved. However, I was forced to request a professionals meeting by November (2015) to address the fact that [Child A] had so far experienced several episodes of Hypoglycaemia whilst walking home from school – causing vulnerability and near collapse. In addition, [Child A] had also been sent home from school on a number of occasions due to prolonged episodes of Hyperglycaemia which had resulted in physical illness and lost learning, as well as family/work disruptions.

It was evident that [Child A] was forgetting to attend First Aid, or would often attend very late – having forgotten and had subsequently eaten foods without having had insulin or blood glucose testing. It also transpired that [Child A] had engaged in PE lessons at times when the IHP states that she should sit out to avoid illness/serious risk. When asked why [Child A] was not supported in accordance with her needs, I was told that it was not the duty of the Student Health Officer [SHO] to chase around after [Child A] whenever she failed to attend First Aid. Unfortunately, during the next 8 months it became normal that I would receive daily phone calls from the [SHO] reporting repeated episodes of Hyperglycaemia; to collect [Child A] due to illness, and/or deliver immediate supplies, i.e. no reserves available, pump failure – where the [SHO] refused to do a set change or administer injections.

In January 2016, I received a call from the [SHO] to say that [Child A] had experienced a 3 hour long period of Hyperglycaemia and was subsequently feeling unwell. However reception staff could not locate [Child A] when I arrived and they were completely unaware of matters or the fact that [Child A] had been left unsupervised. It later transpired that the [SHO] had informed [Child A] that she did not require insulin before PE as she would apparently ‘burn it off naturally.’ The [SHO] had then administered a correction dose of insulin before calling home to report a blood glucose of 22.8mmol. Following this, she had then instructed [Child A] to go to lunch, where carbohydrates were again consumed without the necessary insulin treatments. This information was neither recorded in the home/school book nor communicated to me directly.

In February 2016, I received a call from [Child A] stating that she felt unable to walk following a Hypoglycaemic episode at an after school event. [Child A] had informed the teachers but stated that they did not know what to do. [Child A] was therefore not provided with immediate access to fast acting glucose treatments that are kept locked in First Aid. Following a task in which [Child A] described her whole body trembling: from head to foot, she was then dismissed to walk home. The IHP states that [Child A] should be supervised during treatment and that blood glucose levels should be retested 15 minutes after fast acting glucose – for Hypoglycaemia, to ensure safety. This incident was reported as a Safeguarding concern to the Pastoral Manager and discussed directly with a member of the Children’s Diabetes Team.

In March 2016, I requested a professionals meeting to include the Special Educational Needs Coordinator (SENCO) as [Child A] was clearly struggling with Executive Functioning (EF) difficulties in relation to ADHD symptoms, i.e. forgetfulness, distractibility, disorganisation, poor concept of time, misplacing/losing equipment, etc. [Child A] had already undergone a 3rd QB test – at the request of CAMHS, which demonstrated the same as that previously shown but still we were without diagnoses or treatments of any kind. My 3rd request for an EP referral was again ignored by the school as they had no apparent concerns regarding behaviour or learning. My application for an Education Health Care Plan (EHCP) was subsequently refused as both school and the Local Authority (LA), viewed the difficulties as medical and organisational, as opposed to learning needs. This meant that [Child A] was not entitled to additional support.

Meanwhile, [Child A] continued to make little or no progress across the curriculum. Attendance was at an all-time low of 75% and her mental health was crashing with daily aggressive outburst; self-harming, suicidal thoughts, obsessive/compulsive behaviours, etc. An EP assessment – arranged via a Children’s Charity, found that [Child A] had moderately elevated levels of anxiety, depression and anger; with internalizing behaviours in the clinically significant range. It also confirmed that [Child A] had executive function difficulties with short-term memory and speed of processing differentiation – requiring special arrangements.

In June 2016, I received a call from [Child A] asking to be collected due to repeated episodes of Hypoglycaemia. I later learned that the [SHO] had chosen to forgo the medical advice contained in the IHP, which states that insulin must be given after food. [Child A] had not realised that she had instead been given insulin before lunch – accounting for a large amount of food, whilst she had eaten very little. The [SHO] had failed to check this and I had not been informed of a change – actioned without parental permission. Upon arrival at the school, I witnessed [Child A] slouched behind reception in close proximity to staff who appeared completely unperturbed by her poor condition – pale complexion, confusion, slurred speech and obvious fatigue. This resulted in a prolonged state of Hypoglycaemia throughout the evening, due to an overdose of insulin. I reported this matter directly to the Children’s Diabetes Team as a matter of urgency, given that such an incident could result in serious injury or death.

Later in June 2016, I received a call from [Child A] where she stated that she was currently experiencing a hypo and was worried; having already self-treated, as her blood glucose levels were continuing to drop. When I arrived, she was evidently poorly; ghostly white complexion with sweat particles across her face. [Child A] slumped into the back seat of the car groaning aloud, saying that she felt really weak. Blood glucose levels continued between 2-3mmol and I had to make several adjustments on the insulin pump and also treat [Child A] with fast acting glucose, in order to maintain safe levels. When trying to establish the factors involved, I discovered that [Child A] had experienced an earlier hypo and had been permitted to walk the distance across the school grounds to First Aid, whilst accompanied by another child. In her statement [Child A] had said that she felt so weak – ‘as though she could collapse at any moment.’ The IHP clearly states that staff should attend [Child A] during an episode of Hypoglycaemia and that she must remain seated to avoid serious risk.

Once at First Aid, the [SHO] instructed [Child A] to locate her own fast acting glucose and sit outside the room alone to consume the treatment. The pump data shows that within 6 minutes of arriving, [Child A] had received a large dose of insulin – whilst experiencing Hypoglycaemia: 2.2mmol (with an arrow depicting a fast drop). [Child A] did inform the [SHO] that she still felt low but states that her feelings were dismissed. [Child A] had also been addressed by the [SHO] for eating her snack whilst re-entering the room – hunger: a symptom of Hypoglycaemia as stated in the IHP. The [SHO] failed to act in accordance with emergency procedures for Hypoglycaemia – not to administer insulin under any circumstances. [Child A] states that she ate as much as she could possibly manage to avoid a potential collapse and that she was particularly worried by the fact that “no one would probably have noticed or even have known what to do in that situation.”

These events are what ultimately led to my decision in removing [Child A] from an environment that I felt was unsafe. I immediately contacted the LA Safeguarding Unit and upon their advice, I then lodged a formal complaint against the school. I was assured by both parties that an investigation would take place to help determine the facts and a potential course of action. It then took a total of five months before obtaining an appropriate placement at an alternate school, that I am pleased to report does an absolutely outstanding job of supporting [Child A] with her medical needs and the subsequent mental health difficulties resulting from her experience.

However, such delays meant that I had to resign from a long-standing position and career prospects in Children’s Mental Health Services and instead I was forced to home educate as [Child A] had received no learning whatsoever. At the same time, I received a letter from the LA Social Care Team to say that I was to be investigated due to non-attendance in school. Since then, I have filed a formal complaint with Ofsted and the Local Government Ombudsman [LGO] and I have contacted Diabetes UK, where I am reliably informed by all parties that separate referrals to the LA Safeguarding Team have been actioned: as part of their safeguarding duties for discloser. Despite this, I have still not been contacted in 18 months and no one to date has been held accountable for the neglect – failure of provision and failure of supervision (NICE, 2009). The very fact that [Child A] could have died as a result of repeated poor actions undertaken by so-called professionals who were entrusted with her care, is actually very wrong indeed.

As part of this journey, I was particularly shocked to learn that the standards for Type 1 Diabetes care in hospitals and community settings, is significantly different to that in schools. For example:

  • School staff are not required to undergo an approved diabetes training programme.
  • School staff are not required to hold medical qualifications.
  • School staff are not subject to stringent tests to assess; knowledge, ability and good practice.
  • School staff are not required to administer insulin under the guidance of a qualified professional, or even in the presence of an appropriate second adult.
  • School staff are not required to maintain an accurate signed log of treatments.

How is it possible for a child to be injected by a member of staff in school who is medically unqualified; and therefore not governed, or supervised to administer a high risk medicine, whilst the exact opposite is a standard requirement in a hospital or community health setting?

In regards to [Child A], I strongly believe that a lack of ADHD knowledge on the part of both health and education professionals has also resulted in; (a) Significant delays in diagnoses and treatment, (b) Poor Diabetes control, and (c) Increased Mental Health difficulties. In addition, I feel that a lack of knowledge in relation to the serious nature of Type 1 Diabetes, has led to subsequent failings on the part of school staff, the Local Government Ombudsman and the LA, in protecting my child from risk of harm.

I am therefore calling upon you for the following:

  1. That my case be properly investigated and subsequently used as a method for learning.
  2. That Type 1 Diabetes care in schools be brought in line with the same quality standards as that practiced in other settings.
  3. That knowledge regarding ADHD and Type 1 Diabetes be improved across all LA services for children and young people.

Why does the life of my child appear to have no value? As a parent, why am I having to fight so hard just to be heard? Why must we sit and wait for the inevitable to happen before action is taken?

Yours sincerely

S. Travers – Mother of a child who is lucky enough to still be alive.