Written evidence submitted by Define Fine: Parent Peer Support for School Attendance Difficulties



This document is a summary of the lived experience of   parent carers of children of children and young people who struggle with school attendance, submitted on behalf of  our national organisation “Define Fine:   Parent Peer Support for School Attendance Difficulties”. 


Members of our team would appreciate an opportunity to attend  the committee to present evidence.


Who we are and what we do ?


Define Fine:  is a lived experience parent carer led organisation with team members also having professional experience across education including SEND and mental. We provide parent carer peer support as well as training and consultancy to professionals.  


We set up in response to the growing number of children and young people who experience school attendance difficulties   This used to be referred to as ‘school refusal’, and now emotionally based school avoidance is a more common term, however these phrases may not explain the full picture of the barriers to attendance which may be due to any number of complex reasons such unmet Special Educational Needs & Disabilities including physical or mental illness, either suspected or diagnosed, bullying or issues relating to academic pressure, or even the school environment. 


School attendance difficulties are complex but all too often we hear these children being described as being “fine” when they are in school .  This can lead to delays in identifying needs and the reasonable adjustments necessary to prevent deterioration of attendance and the impact of unmet needs at the earliest signs. We believe that there needs to be a challenge to the definition of fine .  The majority of these children are far from fine! Hence the name “Define Fine.”


We have produced resources based on relevant government guidance to help parent carers   and professionals to work together to assess and then plan appropriate and timely support.   


These resources are found here in our Barriers to School Attendance guide, including the references to the specific guidance documents it is based on: 


Through co-founding and working with Not Fine in School from 2017, and since leaving to develop Define Fine in 2020, we have provided peer support to thousands of parent carers through our Facebook Group, webinars and through our work with other groups within our SEND and Mental Health networks.     

We have a training course for volunteers and are building   our capacity for more direct parent carer support for the more complex and difficult cases, and to work in partnership and train other parent carer peer support organisations to be able to support their parent carers.   


We do not charge our members for support.   We are grant and donation funded.   We are not affiliated with any paid advocacy or professional service providers, but often signpost to other charitable or social enterprise organisations who we feel aligned with our ethos.   


Alongside our growing national online support group, and the development a more direct model of Parent Carer Peer Support, we are now offering our CPD accredited courses to professionals across education, health and social care, as well as to Parent Carer Forums and   parent carer support organisations. Feedback from our courses has confirmed that these are useful tools  to enable all to navigate the barriers to school attendance and ultimately to work effectively with parents to improve school attendance.  


We asked our Parent Carers to Tell us what they children say about why they struggle with school .  Here are some responses:


Shouting and loud noises make my tummy and head hurt    

E, 10  Anxiety and sensory processing difficulties 


The days are too long

Maths is too hard

My chair is too hard

My Uniform hurts me 

M aged 9 Autistic


I try hard but I can’t finish my writing and then I have to stay in at playtime to catch up so I don’t run around around outside and play with my friends.   M. 8 ADHD, Dyslexia


At school my tummy hurts, and my legs ache and I feel really tired. I just need a little break sometimes  and  go to the toilet when I need to but they don’t let me.    

 F. 9    Medical Condition


I don’t like Wednesdays.  That’s  the day my whole class has a brass brand lesson in the hall.  It is so loud

J. 10   Autistic,  

sensory processing difficulties 


School is a big trick to make me write, even science. Writing is the hardest thing for me but there are lots of things I am good at.  I don’t do them very often though .  They make me write more.      G. 12  Dyslexia


A LONG LIST OF POTENTIAL BARRIERS TO ATTENDANCE Influences documented as part of Not Fine in School 2018-2020 parent surveys and Define Fine and School Refusal support group members responses    backed by research!
These put our children and young people at a disadvantage!



          *Unmet Special Educational Needs and Disabilities, in part due to support,  training,  and resources in school

          Autism and/or ADHD, and other neurodivergence

          Pathological Demand Avoidance (PDA), avoidance due to oppositional defiance or rejection sensitivity (ODD)

          Communication and interaction difficulties

          Sensory processing difficulties or sensory overload

          Dyslexia, executive functioning, working memory and processing difficulties

          Mental health conditions

          Health conditions – physical and mental health exacerbated by NHS referral thresholds, and long waiting times for both mental and physical health appointments for diagnoses and treatment

          Invisible illness or rare diseases

          Chronic Fatigue Syndrome /ME

          Sleep onset disorders

          Social phobia, separation anxiety, or fear of leaving security to family and/or home

          Difficulty with transitions, primary to secondary or to a new school

          Trauma –  including ACEs, PTSD and school trauma

          Difficult Family relationships or living conditions

          Illness or death of family member, parental  relationship break down

          Bullying by other pupils or even staff members

          Bad experiences at previous schools

          The organisation of the school – environmental, or timetabling the curriculum, behaviour policies,  including zero tolerance,  access to drinks,  toilets - even for periods!

          Insufficient pastoral care support

          Not feeling safe at school

          Friendship difficulties

          Academic Pressures including testing and assessment

          Unsympathetic uniform policies not supporting sensory and racial differences

          Stress possibly affecting health in other ways such as resulting reduced immunity to childhood illnesses

          The current Educational System, politically led, nor child or  teacher led.  Square pegs!




The main suggestions from school

Despite the long list of complex contributory factors to attendance , the most common recommendations from school our parent carers report are : 

“S/he is fine at school…just get her/him in!“


It’s your parenting. You need to set firmer boundaries.”


Have you tried a sticker chart or rewards ?


“Make home as uncomfortable as you can“


Tell them they need to go to school or they won’t get a job”


“They have learned this from you. You are projecting your worries on to them”


Shall I come and collect him/her and show you how to get them in?”


“If it was my child …………”



When Support Plans Work

When our children and young people are supported  they are much more likely to be able to attend.   For some of our children  support and recovery  comes later and they can thrive in other alternative environments,  college, and beyond.


My daughter has a physical disability.   She has thrived in mainstream because of the inclusive ethos of the whole school due to the head teacher who is also the SENCO.   They work with us and she has the reasonable adjustments she needs to stay healthy and happy.  

S parent of physically disabled child.


The best thing for my daughter

was when school finally agreed to let her drop a subject she was really struggling with.

R. Parent of a young person autistic ADHD


My son's LSA is amazing. She is so in tune with his needs and adapts his day depending on what he needs. She communicates with me daily and we work together.

 G. Parent of PDA child 


My son was in a small SEND groups at school working on functional skills English and maths and not doing well.  Now he has a scribe he's moved up to top sets for all subjects and is now planning to stay on to do A levels. 

M. Parent of dyslexic child


My two sons are stuck in a no mans land between mainstream and special school .  they don’t fit into any setting.   They need a small, more flexible, kind mainstream provision but that doesn’t exist.   One now has school trauma .I home educated him when the LA refused to provide alternative education and now he has EOTAS (Education Otherwise than at School ) Funded by his EHCP.   He is so much better!


School didn’t work out for my son because they wouldn’t let him do a reduced amount of a levels.      He was removed from roll of his sixthform due to attendance.  He is now in the final year of a degree with the Open University.


The impact on the parent carers and the wider family

Parenting or caring for a child or young person struggling with school attendance can be  really challenging.   Professionals have a duty of care to ensure they are not impacting on the mental health and well being.   Parent Carers also need support to ensure they  look after their  own mental wellbeing, so that they can  support their children, young people and wider family.
Siblings are also at a disadvantage and the distress and strain of the parent carers impacts on their well being.


At one point I thought I was going to have a breakdown. Thoroughly unsupported by the school, shamed and blamed


Stress, constant emails and phone calls, complaint writing, job losses x2, reduced family income, social isolation judgement and isolation from friends and family who don't understand, threats of fines, expectations to attend meetings and engage with everyone who is thrown at us, sleepless nights, worsening health, guilt.


If I am perceived to be failing to meet a child’s needs, it’s neglect or abuse, and I face losing my job, my home, and my child. When a school or LA fail to meet their needs and cause palpable suffering… nothing.


We were reported to social services by our school who didn’t do a very good job of investigating.  They believed a head teacher despite the evidence from medical professionals about my children’s SEND and health.   I was accused of Fabricating and Inducing lllness and support was withdrawn from my children, so their attendance was impacted.   Eventually I complained to the LGO and my complaint was upheld but the damage has been done.


2years of hell. I left my job so financially, health everything and I was blamed. It nearly caused a divorce.



 Has not quite broken us but we no longer living but surviving. Due to inadequate support at every stage now son unable to engage in life let alone education. Frustrating, isolating, so so hard. Huge impact on sibling.


It’s like a kind of grieving really.


Traumatised really and I don't use that word lightly. Traumatised vicariously because of what my daughter experienced but also from my treatment by the school.



A summary of the issues our parent Carers report, and that we see daily through our Parent Carer Peer Support and Advocacy. 

  1. Time delays in schools and professionals acknowledging the children are struggling until almost too late, such as when the child is very distressed and attendance has significantly dropped, or the child is no longer able to attend.
  2. Focus on the child or family issues initially to the exclusion of considering school based barriers, SEND unmet needs
  3. Lack of evidence based, professionally led collaborative plans. Too many plans are based on opinions and judgements without even carrying out observations or following professional advice .


  1. Parent blame, parenting courses that may be inappropriate for the need. 
  2. Schools not authorising absence for mental health and even not physical health !


  1. Threats of prosecution and prosecution processes rather than a focus on solutions and working together to with children, young people and their families.
  2. Referrals to safeguarding without properly triaging risk .  Many of our children are really not at risk at home.  They are at risk of harm at school due to unmet needs and their vulnerabilities.

    Some families may benefit from Early Help or social care assessments, but school attendance difficulties are not necessarily safeguarding or parenting issues. It is vital that there is multi-agency understanding of the issues and guidance surrounding these diffculties. Any interventions should be led by professionals who are qualified and experienced in SEND, mental health and attendance .


  1. Schools and/or LAs not following statutory guidance:







  1. A lack of accountability for schools and academies.  They investigate their own complaints and do not have an Ombudsman.
  2. Delayed or no access to alternative provisions whilst the children deteriorate.
  3. Long waits and high thresholds for  referrals to CAMHS, educational psychologists and then schools not following professional advice. 
  4. A lack of suitable school places that are flexible and an emphasis on exams, Progress 8 etc rather than a suitable education that is child led, in particular for our  children.
  5. Battles for EHCPS
  6. Schools being underfunded and not trained in school attendance barriers,
  7. A lack of kindness and common sense from professionals !




The importance of Valuing  and Promoting  Parent Carer Peer Support such as Define Fine and the Charlie Waller Place Network peer support organisations.

Often the best way for parents and carers to get support is to connect with others who have been through something similar.

This is known as parent and carer peer support. It is a vitally important way of giving parents and carers the confidence, skills and knowledge they need to support children and young people.





We find the current guidance “working together to improve attendance “useful for our parent carers and the professionals who are working with their children .  We feel that the guidance could go  further to ensure our children’s needs are met and they are able to access a suitable education.

Overcoming Barriers to Attendance by following the guidance
The Define Fine: Parent Peer Support for School Attendance Difficulties Team have co-produced this resource based on current relevant government guidance, to help parent carers and their families to work with professionals to assess, then plan appropriate timely support to overcome their child's school distress relating to SEND and health barriers to attendance.

Support Mental and Physical Health
Schools and colleges should develop an environment where all pupils with mental and physical health conditions feel properly supported so that they can play a full and active role in school life, remain healthy and achieve their academic potential.


Referrals to CAMHS and other Health Professionals
A child or young person may need support through referrals to CAMHs, paediatricians, Occupational Therapists, Speech and Language Therapists or specialist coaches.

Schools do not have to wait for a formal diagnosis before providing support to pupils but should follow advice from health professionals, and value the views of parents and pupils.


Collaborate on an Individualised Plan

Assess and Acknowledge Special Educational Needs and Disabilities
SEND children and young people are more likely to struggle with attendance, especially those with needs not yet fully assessed, understood and supported. SEND includes ADHD, Autism, PDA, Sensory Processing Diffculties, Dyslexia, executive functioning, processing and working memory, learning differences, and social, emotional and mental health conditions. These may affect their ability to learn, to communicate or regulate emotions, or lead to masking.

Schools have a duty to make reasonable adjustments to ensure SEND pupils can fully participate in school life .



Refer  to an Educational Psychologist
An Educational Psychologist can assess a child or young person’s barriers to learning and recommend appropriate interventions as being unable to attend school or college is often a symptom of a significant need perhaps not yet identified.


Request an *EHC (Educational Health Care) Needs Assessment or Review



Authorising Absence

Schools should authorise absence due to illness, both physical or mental health related, and not request medical evidence unnecessarily. Consideration of the long waiting times and high thresholds for referrals to NHS specialists should mean that attendance is not prioritised over health needs. Families need support rather than threats of fines or prosecution, which rarely resolve attendance difficulties and can add to a child or young person’s and the wider families concerns.



Provide Learning and Connections While Absent and La section 19 duties
Children unable to attend school should be able to access a broad and balanced education suitable for their needs, to enable them to maintain academic progression and allow them to thrive and prosper. Schools should welcome pupils back following an absence, provide good catch-up support to build confidence and bridge gaps in learning.

The LA are responsible for arranging education for children who, because of illness or other reasons, would not otherwise receive suitable education, as soon as it is clear that the child will be away from school for 15 days or more.

February 2023