A case study of What can happen When parents and schools disagree. Are these children at risk of harm?
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 health declining. It could be 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 Special Educational Needs (SEND) policy stresses the importance of a partnership between home and school, and our social care model emphasises giving parents and children a voice. However, when parents attend meetings to discuss problems – including health, SEND, attendance difficulties, a phrase all too often heard from the professionals is “We’ll s/he is fine in school”. Is this phrase a desire to be optimistic, perhaps a very loose definition of the word fine, school not being aware or acknowledging the extent of the difficulties, or sadly an actual refusal to accept that any problems exist?
Either the parents are mistaken that their child is struggling at school, or that their problems are not related to school and therefore due to home and other circumstances outside of school, or maybe school is missing something? It is quite common for children with school refusal, school anxieties and SEND to hold in their feelings at school, to mask their problems. If it’s believed that children are fine in school, it’s unlikely there will be an agreement on the difficulties they face and the support they may need, which impacts not the only educational success, but also mental and physical health deterioration, which in turn can reduce 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, that 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 education and health would dispute that they have limited budgets and resources, but 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 years to get treatment through NHS practices of passing children from one specialist to another to rule out possible conditions, rather than a quicker more sensible multi-specialist team around the child. Others don’t meet the criteria to be referred, despite their difficulties. Doctors and health services 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 SEND with genuine reasons for attendance difficulties, there is a growing, worrying trend of suspecting parents of Fabricating and Inducing illness (FII), resulting in referrals to social services, at which point it can rapidly become an even scarier situation.
Sara has found this to her cost – a former teacher, and a parent of three children with SEND and health difficulties. It took years of deteriorating health, way too many appointments, and tests, to reach the diagnosis of Joint Hypermobility 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 the school refused to do this. Aged 15 he was diagnosed with dyslexia, and visual stress/Irlens aged 17. He found ways to accommodate his difficulties, despite not being able to see more than a few letters on a page at a time. His health has deteriorated to being severely life-limiting, the school removed him from their roll, 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 son also 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 bullying. He was then diagnosed with dyslexia with slow working memory and slow processing speeds plus oversensitivity to touch, sound, and light.
All three of Sara’s children had Consultant and LEA Educational Psychologist or specialist SpLD assessor diagnoses. What happened next was and still is difficult to understand. Two out of her children’s three schools refused to accept the diagnoses, and one actively worked to overturn them, refusing to speak with or follow advice from Consultants, and therefore they wouldn’t make the necessary adjustments at school. The children were struggling, and their health was deteriorating. Sara was attending school meetings at one, and regularly emailing to update schools and ask for support, but she feels schools focused on attendance but not on her children’s needs, with illness being re-recorded as unauthorised.
As her youngest child’s struggles increased Sara was unsuccessful in arranging meetings or discussing 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 SEND difficulties, and obviously gained something from it. Sarah was as shocked as anyone would be, as 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 SENDiass 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 SEND policy as it now states, “we recognise that children with SEN are more vulnerable to bullying”, no one informed me of the change or how that would apply to my son. As I was under the LEA prosecution officer and had 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 shouldn’t have told Sara of her suspicions, nor waited two months to report her to Social Services as these actions 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 the 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 a Section 47 Social Services Child Protection Conference had been called for her middle and youngest child due to:
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 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 educate. Social Services ignored that 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 education 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 help.
Most people understand that having children with medical and SEND conditions can often be difficult, but Sara, along with many other SEND parents, faces the added pressure of asking, begging and pleading for help for them and having those requests denied – not to mention the added stress of being investigated and accused of harming her children.
On the day of the conference, each school reported that her children were “Fine in school”. When asked to define ‘fine’, it was admitted that her daughter falls asleep at school, is tired, and ill quite often, doesn’t cope well with change, and gets anxious at school, with acknowledgment 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 has ADHD nor severe dyslexia. Her daughter is in the 96th percentile for intelligence, but the 0.5 percentile for writing and 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 hurt, but I get told off if I am late and I don’t ever want to go back.”
Do they sound fine at school?
“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 investigators were 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 happens to them for doing the opposite – under estimating 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 SEND conditions. There are few professionals who understand co-morbidity of conditions, as they are experts in their 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 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 more likely to have a much better outcome than my older son with similar conditions. The only grey area seems to be that my daughter’s ADHD medicine hasn’t been very successful, and problems we faced due to the locum CAHMS nurse who discharged him. All could have been explained if I was given a chance to explain and if the medical notes had been read. Since the conference, I have noticed that her treatment has not even followed the NICE guidelines. It’s 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 haven’t, and the professionals who are involved in their diagnoses, and care agree.”
Why did this lead to child protection? And 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 instigated 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 won’t be believed and that my children might not get the care they need, and I certainly can’t accept the effects 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 and 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 to 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 know we have to face the fact that there is little support available.”
Other parents have shared similar stories with me, demonstrating that sadly that is not an isolated case. Sara’s 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 is. 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 had been FII. It is so rare that some professionals question whether it even exists. Hundreds and hundreds of loving mothers, struggling to get help for their children are being put through stressful Child Protection Investigations. Mothers of children with medical and SEND conditions, some not yet diagnosed but affecting them anyway – Autistic Spectrum, ADHD, Dyslexia and other learning difficulties. Some conditions are very difficult to get diagnoses despite their symptoms, including EDS and other joint Hyper-mobility syndromes such as Sara’s eldest.
Unfortunately, some of these families face child protection proceedings, with attendance orders issued to force children into school without support plans in place, some children have been taken into care, later exonerated when diagnoses are made. Sometimes these mothers themselves are easy targets.
Why has this, and threats of prosecution become such an all too common response?
This seems to be due to health and educational professionals not working together with 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 systems are struggling.
British under-resourced schools following a politically led curriculum, that changes too often, prioritising SAT and attendance, exam results and league tables – schools with decreasing budgets unable or unwilling to meet the needs of children with medical or SEND conditions. Do they work with health? Social care? Many schools expect doctors 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 meetings instead of looking at solutions, or making plans to meet children’s 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 of children 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 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!
” 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 was not warranted, and I 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 is not being shared to apportion blame, but instead 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’ do get the help they need.
I am very grateful to Sara, for sharing her story. Her name has been changed to protect her family, and to prevent identification of the professionals involved. She has shared her files of documents to verify her story.