What do parents do when they believe their child is struggling at school? Maybe they have noticed a change in mood or behaviour at home, less interest in hobbies, or club or friends, or theirhealth declining . It could getting harder and harder to get them into school, or perhaps they are not getting their child or young person into school at all . Current SEND policy stresses the importance of a partnership between home and school, and and our social care model emphasises giving parents and children a voice. Howeverwhen parents attendmeetings to discuss problems -including health, SEN, attendance difficulties, a phrase all to often heard from the professionals is “Well s/he is fine in school”.Is this phrasea desire to be optimistic, perhaps based ona very loose definition of the word Fine withschool not being aware or acknowledging the extent of the difficulties, or sadly an actual refusal to acknowledge that any problems exist?
Either the parents are mistaken that their child is struggling at school, that their problems are not related to school and therefore due to home and other circumstances outside of school, or school is missing something. It is quite common for children with school refusal, school anxieties and to hold in their feelings at school, mask their problems. If it’s believed that children are fine in school its unlikely there will be an agreement on the difficulties they face and the support they may need , which not only impacts educational success, but also mental and physical health deterioration, which in turn can reduce successful attendance.
Unless you have direct experience of the kind of problems many children and their families currently face, you would be excused for thinking that with policies in place to ensure their needs are met, all schools across Britain would be supportive of children with SEN and medical diagnoses and other problems, allowing these children to go to school and access a suitable education.Few people who work in educationand health would dispute that they have limited budgets and resources butsome schools don’t seem to understand the way the NHS works.They expect children to be referred, diagnosed,treated and therefore recover.Sadly it can take yearsto get treatmentthrough the NHS practice of passing children from one specialist to another to rule out possible conditions, rather than a quicker more sensible multi-specialist team around the whole child.Othersdon’t actually meet the criteria to be refereed, despite their difficulties .Doctors and health are unlikely to understand the ever changing education policies, and options for children who struggle.
If schools do not agree that these children are unwell or struggling with SEN with genuine reasons for attendance difficulties,there is a growing, worrying trend of suspecting parents of Fabricating and Inducing illness(. FII), with referrals tosocial services and which pointit can rapidly become an even scarier situation.
Sarafound this to her cost – a former teacher, and a parent of three children , with SEN and health difficulties. It took years of deteriorating health, way too many appointments ,and tests,to reach the diagnosis ofJoint Hypermobilty Syndrome -EDS, and POTS for her eldest son, sensory processing, possible ADHD -ASD traits causing severe sensory processing difficulties . A paediatrician had requested an Educational Psychology assessment to determine the impact of his health on his learning, and a link between learning difficulties and his health, but school reused to do this. Aged 15 he was diagnosed with dyslexia and visual stress/Irlens aged 17. He found ways to accommodate – despite not being able to see more than a few letters on a page at a time. His health deteriorated to being seriously life limiting ,school removed him from their role and he is currently unable to continue with education.
Unfortunately Sara’s daughter struggled with the transition to high school, due to ADHD and dyslexia.Her youngest started to show similar symptoms to her eldest son. Following a GP referral he was also diagnosed by a consultant rheumatologist.-which as these are genetic conditions wouldn’t have been beyond the realms of possibility .He was not coping with school, feeling ill, in pain, and was struggling with friendships and bulling. He was then diagnosed with dyslexia with working memory, and slow processing plus being oversensitive to touch, sound and light.
All three of Sara’s children had NHS consultant and LEA Ed Psych or specialist SpLD assessor diagnoses.What happened next was and still is horrendous.Two out of the three schools refused to accept the diagnoses, and one actively worked to overturn the diagnoses, refusing to speak with or follow advice from consultants, and therefore wouldn’t make the necessary adjustments at school. The children were struggling, and their health was deteriorating. Sara was attending school meetings, and emailing regularly to update schools and ask for support, but she feels schools focussed on attendance but not on her children’s needs, with illness being re-recorded as unauthorised.
As her youngest’s struggles increased, and he was being bullied, Sara was unsuccessful in arranging meetings or discuss any plans to meet his needs. During a phone call, to discuss this, the Head Teacher advised her that she shouldn’t seek diagnoses for him as seeing doctors can cause childhood trauma, that school felt she was projecting illness from her older children onto her youngest because of her need for her children to have health and SEN difficulties, and obviously gained something from it . Sarah was as shocked as anyone would be. She explains, ” Really? By this stage I had given up my work , was rarely able to leave the house, except for hospital appointments, or the school run, my friendships had dwindled, my marriage was all but over and I was tired out from trying to meet my children’s needs and dealing with the problems which arise as a result of those conditions. Seeing their health deteriorating, and knowing there was little or no support for us, I gradually became depressed. I tried and tried to resolve things, but communication with school broke down. I was banned from communicating with school, who refused to even meet with our SENDaiss support worker to agree his needs and a plan to support his education and keep him safe. Eventually I complained to the governors, but that was not helpful. I think they revised their SEN policy as it now states, “ we recognise that children with SEN are more vulnerable to bulling”, no one informed me of the change or how that would apply to my son. As I was under the LEA prosecution officer and reached a deadlock we reluctantly left the school we had been a part of since my eldest was in reception in 2004.””
The seeds of doubt were growing. Sara eventually discovered that she was being investigated by social services for Fabricating and Inducing illness FII. She had already contacted social services herself, for support and to ask them to confirm once and for all that she wasn’t harming her children and that they had genuine conditions and needed support. Apparently the Head teacher shouldn’t have told Sara of her suspicions, nor waited to report her to social services as these contravene FII safeguarding procedures. She explains, “The social worker was very supportive and I gave her copies of all correspondence between home and school. All my children’s consultants and GPs reported to her that they had no concerns of FII, but she was waiting for another report to come in before case could be closed. Unfortunately after some collaboration with the school nurse, and the schools who had already expressed concerns , a community paediatrician expressed that she was starting to doubt Sara. Her daughter, still waiting for therapy from CAHMS since her referral 2 ½ years earlier, and not yet on the correct ADHD medication due to the comorbidity of CFS, hasn’t recovered . Out of the blue Sara was informed that section 47 Social services Child Protection Conference had been called for for her middle and youngest child: .
- Mother Fabricating and Inducing illness, (no medical consultants who see the youngest and eldest, nor The investigating Safeguarding doctor said that Sarah claimed to know too much about health , due to her apparent claims of being a theatre nurse ( eventually it was admitted he had mixed up her notes with someone else who is actually was a theatre nurse..!). Doesn’t everyone know that the NHS is in crisis with long waiting times for diagnosis and treatment ? That there are reasons why children don’t get better very quickly and in fact that some illness won’t get better.
- School attendance/isolating them to home ed. SS. Ignored that they were two of her children were still on roll at mainstream schools and that her eldest had been removed from his sixth-form school roll, against their wishes and in breach of government ill health policy..
Neither of the schools had informed social services of the real reasons the children couldn’t attend, nor the fact that in the interim they were also receiving education at home – one from LA home tutors, that her youngest was attending home ed groups, forest school and following the prosecution officers advice, she was looking for another school, nor that their unauthorised absences were actually a breach of attendance policy as medical evidence had been provided and one child was not safe to return to school without .
Most people understand that having children with medical and SENconditions can often be difficult but Sara, along with many other SENparents,facesthe added pressure of asking, begging and pleading for help for them and having those requests denied – not to mentionthe addedstress ofbeing investigated and accused of harming her children.
On the day of the conference each school reported that her children were “Fine in school”. When ask to define fine, it was admitted by school that her daughter falls asleep at school, is tired, and ill quite often, doesn’t cope well with change, and gets anxious at school and acknowledged that they don’t see her at her worst as she is unable to attend. They had incorrectly labelled her with a moderate learning difficulty and not informed any of her teachers that she hasADHD nor severe dyslexia. Her daughter is in the 96th percentile for intelligence, but the 0.1 percentile for writing was in bottom sets for every subject . The social worker then read out her youngest son’s words as he told them to her “I am frightened at school, I get hurt by children on purpose and they are mean to me, and I feel poorly , and my tummy and my leg and my head hurts, but I get told off if I am late and I don’t ever want to go back.” Do they sound fine at school?
Sara reports, “Somehow we left the meeting without a child protection plan but the children were placed on a Child in Need plan. The investigation is still ongoing for my FII as most doctors have only reported verbally and the investigatorswere waiting for chronologies of illness . I am still puzzled why my children who have conditions which could be met within mainstream schools with reasonable adjustments were not supported. I understand the opinions and suspicions, but as I have been accused of FII what are the consequences professionals for doing the opposite – under estimating or denying conditions? Whilst I was being investigated surely they should have continued to support them, and accept the diagnoses until they were notified otherwise?
This is a big problem a lot of parents with children with additional needs face. The referral-diagnosing-treatment phases take far too long for medical and SEN conditions. There are few professionals who understand co-morbidity of conditions, as they are experts in their own field but not over multiple fields, and to be fair to them diagnostic criteria of some conditions are rapidly changing. School nurses, even Community paediatricians may not understand complex health issues. Many children have been to referred to medical specialist professionals out of their area, but without record sharing in place, so there are parts of a child’s medical history missing. In our case my eldest, poorliest son, is 17 and they didn’t include him in their investigations. The earlier diagnosis and treatment of my youngest, is actually more likely to have a much better outcome than my older son with similar conditions. The only grey area seems to that my daughter’s ADHD medicine hasn’t been very successful , and problems we faced due to locum CAHMS nurse who discharged her. All could have been explained if I was given a chance to explain, and if the medical notes had actually been read. Since the conference I have noticed that her treatment did not even followe the Nice guidelines. Its little wonder her medication hasn’t worked.
I questioned at the conference why I wasn’t asked for information , seeing as I was aware of the accusations and like every other parent of children with health and additional needs, I have a folder which contains all the information they would need. I gave a copy to the investigating nurse for the investigating doctor, but she didn’t hand it on as apparently it contained too many of my opinions which is ironic as this whole situation snowballed due to others opinions. I haven’t fabricated my children’s illnesses. I absolutely haven’t, and the professionals who are actually involved in their diagnoses and care agree.”
Why did this lead to a child protection conference ? How was that ever going to help this family? Apparently some of the children’s medical records now alert medical professionals that their Mum is suspected and being investigated for Fii. She told me , “When I take them to appointments, I can live with the funny looks I get from receptionists, but I can’t overcome the worry that I wont be believed and that my children might not get the care they need, and I certainly can’t accept the effect of that on my children. Professionals who should have taken care of them spent hours meeting behind my back discussing me and looking for proof of abuse. If only they had spent a quarter of the time meeting with us or putting the support they needed in place. I understand that their time and resources are limited. Me continuing to contact schools asking for the support we needed seemed make things worse. I didn’t know how else to do it. Other parents have heard of the investigation and my children’s friendships have declined, adding to their insolation. Thankfully genuine friends who know me and the children are as shocked and enraged as me. I just hope this will end soon but none of my children are any better than they were and I have to face the fact that there is is little support available ”
Other parents have shared similar stories with me, demonstrating that sadly that is not an isolated case. Sara’s own GP reassured her not to worry about the allegations, as over the past few years he is increasingly requested to report on mothers, to consider FII, and he reports that none of them are. One former CAHMS professional explained to me, that in 35 years of working at CAHMS and in social work, he had only seen one case which may or may not have been Fii. It is so rare, that some professionals question whether it even exists. Literally hundreds and hundreds of loving mothers and their families struggling to get help for their children, are being put through stressful Child Protection investigations -mothers of children with medical and SEN conditions, some not yet diagnosed but affecting them anyway – Autism, ADHD, dyslexia and other learning difficulties. Some conditions are very difficult to diagnose, despite their symptoms including EDS and other joint Hypermobility syndromes such as Sara’s eldest.Unfortunately many of these families face child protection proceedings, with attendance orders to force children into school without support plans in place, some children have been taken into care, some likely to be later exonerated when diagnoses are made. Many of the mothers themselves may also be autistic, have ADHD and/ or similar medical difficulties.
Why have social services referrals and threats of prosecution become such a common response to children who struggle with school attendance ? This seems to be due to health and educational professionals not working togetherwith parents and children, nor with each other. As Sara points out these cases aren’t even strictly Fii. These are professionals disputing each others diagnoses, refusing to acknowledge and study each other’s professional judgements. Professionals refusing to acknowledge that their own systems are struggling, British under resourced schools following a politically led curriculum, that changes too often, prioritising SATs and attendance, exam results and league tables -schools with decreasing budgets unable or unwilling to meet the needs children with medical or SEN conditions. Do they work with health ? Social care?Many schools expect health to write sick notes, despite there being no such thing as a sick note for children, to patch the children up and send get them back into school. Health professionals expect that schools will follow their advice, as surely health needs are more important than school for many children. Social care budgets are spent investigating and meetings, instead of looking at solutions, or making plans to meet their needs. It must be easier to blame parents rather that acknowledge fundamental problems in education, health and social care. Even most mental health programmes for young people fail to acknowledge that their difficulties may arise because of school .There are a growing number ofchildren for whom school is a struggle. Their health and SEND are a barrier to thriving, or even coping with the school environment.The system itself, the way it is organised is likely to be contributing or even causing their difficulties.
Sara agreed to share her story , to highlight the problems too many families face, and the need to protect vulnerable children and their families from similar difficulties or worse, but even doing this could be an evidence of her guilt. Apparently Mothers with Fii are more likely to complain – but then so are indignant, innocent mothers who know their children need help ! She asks,” Is this a way to silence us, to detract from our complaints, one way to make sure we are unlikely to ask for help again? If it is I can’t accept that. That won’t help my children , and it won’t help others either. I understand the pressure schools are under, and that school and health professionals have limited resources, and presumably social care too, but as I feel that in our case child protection were not warranted, and feel that resources could have been used to support us. I can’t understand why this happened, nor where we go from here. ” Her story isn’t shared to apportion blame, but to raise awareness, and as a plea to professionals to listen, to question their assumptions and find solutions.
Whether the accusation of Fii is investigated or not, the problem of not believing or acknowledging what parents report remains. The sooner medical and educational professionals work together with parents, young people and children, the sooner they will put the necessary support in place to make sure that children who are ‘Not fine In School “ get the help they need.
Louise Parker Engels. NFIS
I am very grateful to Sara,for sharing her story.Her name hasbeen changed to protect herfamily, and to prevent identification of the professionals involved .She has shared her files of documents,to verify her story.
***** Update. Since sharing her story Sara was cleared of Fii.However needing to clear her name she has since complained to her LA and escalated this to the health and social care Ombudsman who upheld her complaint.*
Apparently a SAR revealed that following a safeguarding incident and an error made by the head teacher at the youngest son’s school, the Head teacher was told by an early help support worker that there were some safeguarding issues which needed to be resolved.The following day the head teacher rang the two older children’s schools to inform them that Sara had “ muncheussens by proxy,”which led to their school disbelievingdiagnoses andsupport being withdrawn. This occurred 9 months before a referral to social services .
The SAR also included social worker notes regarding the formerearly help worker and recorded this,
“Concerns are between mother and the school and no safeguarding was raised when she was involved with the family . Mother is a professional and she believes this has caused tension between her and the school as mother knows the policies etc but school don’t always follow through with what is agreed, made plans to increase the timetable against medical advice. “
At strategy meetings the head teacher stated that Sara took,her children to too many appointments. None of her statements were true, and no other professional questioned her,nor asked for evidence of how many appointments, nor which ones.They turned out to be a small number of appointmentsrelevant to their diagnoses following GP and specialist referrals.
As a result of these actions, the eldest son’s health was disputed and he was not allowed to continue with A’levels.Her middle child was not supported at school, nor the LA as there were doubts aboutsen needs which led to 2 years from applying for an EHCP assessment andappeals until shewon her appeal. By this timethe provision was out of date. This child has only had 4-6 hours of tutors at home for the last 3years of secondary school, and Sara is trying to arrange a post 16 package of educational support.Her youngest became even more unwell and did not cope with a transition to a new school and has been diagnosed with School Trauma and has been home educated for the past two years.Sara has just receivedthe SENDIST tribunal judge decision of EOTAS – Education Other than at School.
It was later found that her middle child did not even have CFS, but has a neurological sleep onset disorder.
Sara feels that despite the allegations being unfounded, she and the Children will never quite get over the years following the allegation.Defending herself and struggling to get support has taken its toll.
It has been four years since Sara’s first allegations of Fii, and over two years since this original article was written.Sara looks more relaxed and happier than when we last met. She was excited to share the news that her eldest son has enrolled on a degree course at the open university starting in the autumn,and that her daughter has developed her talent for sport and working towards training as an elite athlete.
Her younger son is happier and healthier than he was and will hopefully be able to access a full time education this coming school year.
Copyright Louise Engels 2018, 2020