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:
- That my case be properly investigated and subsequently used as a method for learning.
- That Type 1 Diabetes care in schools be brought in line with the same quality standards as that practiced in other settings.
- 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?
S. Travers – Mother of a child who is lucky enough to still be alive.