EBSNA Group Session Friday 3rd May 2024 Mindworks EBSNA Project

Attendees: Dr Dave Damon – Mindworks, Jeremy Webster – SCC Councilor and Vice Chair of the Children, Families, Lifelong Learning and Culture Select Committee, Lucy Young and Gretta Schifano – Family Voice Surrey and 28 parent carers

This session was the second of our EBSNA groups involvement in Dr Dave Damon’s EBSNA Project. The aim of this session was to gain insight into what helps with School Anxiety and EBSNA and where good strategies and measures fail, attempt to establish what could have been done differently.

We were delighted to be joined by Jeremy Webster who is involved in the current end to end review in his capacity as Vice Chair of the Children, Families, Lifelong Learning and Culture Select Committee

The session was well attended and as a result not everyone had a chance to speak. All comments in the chat and received after the session have been incorporated.

What became very clear is that there is hardly any lived experience of things that have helped other than in the very short term.

This is a very short summary of a huge amount of information. The emotional cost to parents of recounting difficult and often traumatic experiences must not be underestimated. Yet it is critical that decision makers up to the highest levels hear directly from these families. They can have no doubt that the SEN and school systems are having a devastating impact on the lives of many, particularly for ND individuals and their families.

Update from Dr Dave Damon

Dave recognizes there is a gap in ND specific understanding around EBSNA. He is working on some specific training for this.

Dave observed that EBSNA almost invariably stems from unmet need and/or needs that are misunderstood or not identified.

In this session Dave is very keen to hear lived experience of things that help.

Next Steps

Dave will send a draft of the new ND specific training for input from the group and we will schedule a session to discuss this.

Move forward with parent input/attendance at EBSNA training to schools.

Support for parents – this was only covered briefly but I wonder if our current EBSNA support group could be used as a springboard for regular zoom and in person support groups across the county.

Key Measures identified in the session

Listen to parent/families concerns – often parents have been asking for help for months or years before crisis point is reached but have been dismissed and their input minimized.

Listen to Professional input – parents report getting input from professionals such as CAMHS, STIPS, Outreach. EP’s and this being disregarded by schools.

Follow the Ordinarily Available -parents report this rarely being followed

Needs arising from SEN are not choices not meeting-ND needs appropriately or treating meltdown and burnout as a choice is no different to punishing an epileptic child for having a seizure. If a measure is not working change the measure, Ask the child. Ask the family.

Apply reasonable adjustments consistently and keep applying them – parents report adjustments not being applied for long enough and not followed by all staff. It is worth noting that there are policies within Surrey which encourage removing support as soon as it is working to prevent dependance. In practice this leads to a downward spiral of crisis and is often wholly inappropriate. This needs to be addressed as a matter of urgency.

CRIB Sheet – this does not exist, but many expressed how useful it would be.  No more than A4 in length – one for reasonable adjustments, one for Alternative Provision and the law around this. One for sources of support for parents and so on. Identical crib sheet for ALL both parents and professionals

Accountability . tribunal, LGO, formal complaints to school – too slow to prevent damage and breakdown. Apologies are made but this does not repair the damage done to children/young people and families or replace lost education. Families need a mechanism to ensure the law and own ordinarily available is followed.

Transition planning at key stages and between years that is meaningful, understood and adhered to by ALL staff

Assessment for ND is key -to ensure appropriate support and also to support the long-term mental health of individuals.

Identify and remove roadblocks to support – every block and hoop a parent has to jump through leaches time from the support they need to be giving their CYP who are often in crisis.

Advocate – families need someone who can advocate for them. Professionals tend to only hear what is said by other professionals.  It would be interesting to correlate the increase in SEND Appeals before and after the removal of the Core Assets service.

Removing all demands – when in crisis. Key that professionals understand Trauma, PDA and masking. They need access to real time immediate input –so they can say for example I’ve got this situation in my class what do I do right now, today? – not an email to a service such as outreach or STIPS that may reply days or weeks later.  Could there be a group of expert by experience parents that schools could call on? Could setting this up be part of the current project?

EHCP’s all should be reviewed for discriminatory language and measures that cause placements to break down due to unmet need.

Parent Voice

“We are finally attempting a reduced timetable but no strategy working at all as even entering school is impossible now”.

“All interventions are arranged by our family and outside of school. No help from elsewhere. Received refusal to issue EHCP. No help from anywhere. Everything is a battle.”

“We tried so hard to avoid the placement breaking down but all our concerns were disregarded. After we formally complained to the school the Head has now apologized for what happened and says they are looking at this and have recruited a consultant. But it’s too late. My child is extremely academic but has been so damaged by everything going wrong. All the provision they get funded by us.”

“Schools only look at children with SEN with a deficit model – no recognition of strengths.”

“This [placement breakdown] may not have happened if parent insight was valued. School ignored all the advice from STIPS, MIndworks etc – there is no accountability when schools do not follow this.”

“My son has missed 70 days since September, he was bullied by peers and not believed. The teacher would go to the bullies and they would deny it. [He was unable to attend school as a result] He was marked as authorized absence. We had no emails from teacher at all. All communications have been parent led. But once we put in an EHCP request the the LA the school suddenly got in contact. We have a reintegration plan in place now – he has a different teacher, has a trusted adult to go to, they don’t ask questions or put him on the spot. RAG system put in place for each week timetable so he has a sense of control and feels less overwhelmed. Why could they not have done this from the start?”

Asked for referral to A2E but told this was only for children with EHCP’s”

“Organized a meeting with secondary school but they’ve said can’t meet needs because he is on a reduced timetable”

“Professionals in the  transition meeting contradicted each other – one said due to his needs they would get counselling in place right away but another said he would go in the queue and would not get this for some time.”

“My daughter has anxiety over having to have 100% attendance even when too unwell to attend. This isn’t considered when looking at EBSNA”

“If someone had a broken leg professional would take an xray to decide the best treatment – they would not just ignore it or use the same treatment for every break”

“The rigid approach in secondary schools makes things impossible for ND children”

“Autistic individuals are all different. It is very difficult to get schools to understand”.

“ The term Ordinarily available is chucked around a lot but there is no extra money so how can this be done. It just isn’t. It is not followed in many cases.”

“[My Child] was marginalized from primary school on, diagnosis is so important as it helps them understand who they are”

“ makes is very hard when a child is masking. School respond with they look like they are fine here, they are not on the SEN register or things like “She’s anxious but everyone is anxious.” A parents we are constantly having to just through hoops to get any help.”

 “Parents have to do everything staff cannot manage the workload.”

“I don’t have the finances to do AP myself so I know I’ll have to jump through more hoops but the hoops sometimes move”

“I know good relations with the staff in the school are key but the only way to get anything done is to escalate and this damages relations.”

“Crisis feels inevitable”

“They don’t have capacity to deal with the children they have.”

“We funded provision for year 5 while being pursued by SCC for non attendance. Ordinaily Available is meaningless as schools cannot fund this. Huge discrimination – if you cannot provide it [AP] yourself  it will not happen. Impacts the whole family including siblings.”

 “You spend your entire life fighting for your child, it is one battle after another. It takes is toll as we have jobs, other children. Feels like we are the only people fighting for our children. It is only when you get to the point of crisis [that you might get help]. People forget when they are pushing forms around that a child in distress is at the centre of this. That a 7 year old child is saying they don’t want to be a burden.”

“Not being heard and not being validated is like hitting a brick wall”

“If it wasn’t for the community of other parents such as the FVS groups I would be lost”

“Crib sheet – one page of things that help. Even after 6 years in this system I only just found out I’m eligible for transport assistance.”

“GP carers funding – I applied for this and was told it is not for people like you”

“Lots of initiatives start well but then just disappear. Consistency is key.””

“The child’s voice is key particularly as they become older”

“constant rejection is so damaging to children and young people. Schools who can’t meet need. Then CAMHS saying they can’t help as not bad enough.”

“Targeted support worker has started to help. It was the first time someone asked him how he felt.”

“ I have had to take a year off work to support my child. The waiting list for CAMHS was too long. It would have been years. Private psychiatrist signed off school and this enabled AP to be put in place. This is working well with Surrey Online School. This is funded by school but I am also having to pay for a tutor and not getting any other support. Only just been told about EHCP’s no one at school had mentioned this before.”

“Things like card to leave classroom when overwhelmed did not help as it draws attention”

“Moved here to go to specialist independent school  -now excluded from that school. Put in PRU but Child self harming and suicidal.  All professional saying they need mental health support but Mindworks discharged them on referral. Everyone rescognises child is in crisis but Mind works will not accept referral.

“Needs to be training on masking. Parents with experience need to be doing this.”

“Parents trust schools when they are saying they are meeting needs but they have admitted in the paper to the select committee that they don’t understand and they cannot meet needs.”

“Without diagnosis you don’t know where to turn”

“Demand management {EHCP’s and Mindworks]-this is creating barriers to early intervention

“I can’t Talk about what helped as nothing did.”

So much rigidity in schools “For example needing the toilet, can only go in break. He nhas medical reasons for needing to go more often. But he learnt that he was not allowed so he would not go. He was having accidents on the way home. Eventually they changed this for him to allow him to go anytime but he could not unlearn the rules.

“School did not believe about the meltdowns [that we reported happening at home] until they started happening in schools. He cannot control his meltdowns.”

“Schools don’t have the resources, training or understanding of SEN. Schools don’t have to take up the training from outreach”

“Attendance awards are rewarding things some children have no control over.”

“He got the blame for everything in school and adults take the side of those who know how to explain themselves.”

“He was scared in school every day”

“Rigidity in schools makes it impossible for so many children. My daughter’s heart rate is at 180 when in class as measured on her fitbit. No one sees this. To them she looks ok.”

“ESBA training required for trauma too not just ND”

“I’m sure that ND CYP make up the vast majority of EBSNA students”

“Good to hear recognition that it is largely due to unmet need. Because for those ND who keep going into inappropriate environments, even when they shouldn’t (under threat of prosecution sometimes), 97% of those who end up permanently excluded have SEN. And so most of those permanent exclusions = illegal because the exclusion is due to unmet need.

“Very hard to do the admin / keep on top of things when you are also trying to parent a kid who is out of school completely.”

“The LA are responsible for alternative provision and yet often avoid it and give incorrect advice”

“we self funded Y5 with no social interaction for daughter. Instead of offering AP they threatened truancy”

“Yes we are also funding some sessions in the interim so she still sees other people but in much smaller groups.”

“My daughter has been given cards for time out as well but is too anxious to draw attention to herself to use them.”

“Relationship- the CYP needs to be able to build a trusting relationship with someone who isn’t a family member. It’s important that the relationship building begins somewhere the child feels safe and, if need be, that be in the home.  Trust is vital – the CYP must be listened to and their views and feelings validated. Linked to this that they must know that it is safe to say ‘no’ to something before they can feel able to say ‘yes’. The no must be respected. Protective factors are to start much earlier in the process of the child struggling and also consider trigger points – transfer to secondary is a common trigger point and moving year groups in primary school.”

“Same as my daughter – she says she can’t leave as she is worried she will miss something, and doesn’t know she needs to leave until its too late”

“That early experience is important otherwise the trauma associated with school becomes so great that accessing anything is impossible.”

“ Early diagnosis is key – otherwise schools deny children support. We had 2 years of this and my daughter has missed 3.5 years out of school as a result. She is now in a school, outside of Surrey, and is getting the support an ESBNA child needs. It is also half the fees of any Surrey equivalent which proves it can be done and not at the eye watering costs many independent schools claim.”

“Of course many parents have to stop work due to the CYP being in crisis and out of education”

“The only real solution is an objective assessment of need by a professional to clearly state the reality. I am an NHS adult consultant psychiatrist and I provide this routinely with CAMHS graduates or people in Uni with a basic support letter, not even a formal report. A school-home conversation with the EP does not provide this as ultimately it is debating 2 views but it needs the EP view. This used to happen when I was a junior doctor in community CAMHS way back in 2006 but the provision is not there anymore so you get 2 people arguing but no one in a position to state the reality with the increased focus on attendance rather than health need. MHST are fantastic but are not provisioned to provide advice on need of pragmatic reasonable adjustments and these children need”

“MDT support. Community pads are more supportive  than CAMHS, which likely reflects the reduction in provision but if you don’t put the resources in then parents and children come to harm. There is no system of accountability for schools.”

“lots of resistance from MindWorks to provide support needed. Wanted us to fit into their box and refused diagnosis o numerous occasions. Parents must be listened to”

“ It’s such an unequal system where some parents have the capability to advocate for their child and/or fund alteratives (AP, assessments/report, private therapy) but many others don’t. We will continue to do all we can so that no other child has to go through our child did, even if their parents aren’t able to advocate for their child.”

“Professionals and schools can use parent blame (I have read so many reports through my work), so we have been very careful not to mention any “family impact” – but it’s definitely there.”

“We have an 11yr old in our house saying he no longer wants to be in this world, I emailed school about this and they didn’t even respond to the email – schools need to believe parents”

“ parents like me who are nuerodiverse themselves, and struggle with communication, and lack of confidence in being assertive and also not understanding all the law, because of the way it is written”

“During year 7 my child told their twin they wished they were dead – it was this which prompted my immediate action. They also suffered seizures for the first time in their life. I did not know they were Autistic at that stage or that epilepsy has a high rate of co morbidity with Autism. It has been a very steep learning curve over the last 6/7 years…”

“My daughter also had a bad experience in the SEN safe space at school when she managed to get the confidence to go, she didn’t understand that she needed to sign in and when she entered the staff said to her you need to sign in (she took this as getting into trouble) then the same staff member told her to write her entry time down (she is in yr 8) but cannot read the clock with a face, so she was unable to write the time down, and left and went back to class and refuses to go back there now.”

“My son learned he had to mask to survive in school. When he couldn’t do it any more he had meltdowns. That was responded each time, with suspensions. And exclusion. He LEARNED from that, because meltdowns are not a CHOICE – that being autistic = being bad. He at times wanted to end his own life. No wonder.”

“Both my children, have theatre, singing and dance, and that is the only place my son is currently happy to go to, both are very talented at theatre, singing and dance and because they are amongst like minded children, so they don’t have to try and make friends as everyone is there for the same reason, they love to get the acknowledgement that they are good at something and that people value their opinions there and they are valued.”

“My daughter puts huge efforts into masking. She is in year four and experienced her first burnout a year ago and was extremely distressed about going to school only to put on a smile the second she arrived. School were defensive, had a ‘one size fits all’ approach and just didn’t understand. My daughter only recovered during the summer holidays.           

“We self funded assessments and my daughter was diagnosed with autism, ADHD and OCD. When she experienced her second burnout before Christmas she was signed off for the end of term by our GP and then had a gradual return. My daughter really benefited from a collaborative approach and school being open to our ideas of what would be helpful to her. Its still hard because she is resistant to anything that makes her feel different to her peers but we are working together with school to focus on wellbeing over attendance. LA have declined EHCNA because school have not exhausted OAP but I can now say that is not for lack of trying.”

“Positive for us has been current Y6 class teacher who could not do more to support and accommodate my daughter. This has eventually made her feel safe in school and she finally has a glimmer of self belief and self esteem”

“A caring individual can make all the difference”

“Interesting that a private psychiatrist was prepared to ( quite rightly )  sign a child off. The Dofe suggest that consultant level  is required and yet for those without the means cannot access this”

“Things that have worked well: COMMUNICATION – someone demonstrating that they care if your child couldn’t make it in today and that they were missed. Comms with both the child and family. CONSISTENCY – when a good idea is introduced, keep it going. If it gets dropped, it reinforces again to the child that ‘they are not worth it.’ Things that have exacerbated the problem include delays, being told you’re ‘not bad enough’ to get any MH support-(finally had some (failed) counselling in y11 having got referred in y7). Having so little support for so long means that MH issue have become deeply entrenched and we now have a diagnosis of Chronic fatigue – with (in my opinion) Autistic burnout. Lack of ‘connection’ and inappropriate curriculum in specialist school means that any benefit in going is outweighed by the trauma of going in. Going in for a couple of lessons requires a day’s recovery at least. All absence marked as unauthorised. Despite having been on this journey for 5+ years, it still feels very lonely.”

“A first year medical doctor in training under consultant supervision can do this, it’s how services are structured in the modern NHS, same as every other aspect of medicine, shouldn’t count against patient”

“that relationship building is where we have had to get to as well. Reduced demands, very contrary to traditional parenting.”

“All I wanted to say in answer to Dave’s question re what keeps CYP engaged in life during EBSNA : the traditional advice given to parents is to TAKE AWAY the things the child enjoys – for ND CYP this is often technology and we are told to take all of this away – this could not be more harmful”

“My suggestion to everyone involved in education is to visit The BRIT school which is the only place 2 of my young people have felt the sense of belonging”

“both my children cant go to the toilet at school, sensory issues with regards to noise, smells, fear of being questioned on the way – so they hold it in, and then don’t drink water throughout the day, they both wont go to the toilet anywhere other than at home.  (also not great for a teenage girl)”

“ When our children start school we trust that staff have the expertise to support all children, and we learn the hard way (too often) that they don’t, and our children are then damaged.”

“We had to apply for EHCP twice as EHCPNA was declined the first  time. When he finally got a specialist school trauma was so ingrained that he was unable to attend”

“What didn’t work – mainstream school refused accommodations as simple as not having to use shirt and tie, didn’t provide a safe space to have lunch without crowds, only offered to request emergency funding for one to one after he stopped going. And parents were not taken into account – as he was academically able and not disruptive – it didn’t matter he was having explosive meltdowns when collected and struggled terribly socially”

“Lack of consistency- they promised someone to walk him from reception to classroom – it “happened once or twice.”

“Surrey has failed so far to deliver therapies approved on EOTAS package and recommended by all professionals that worked with him – OT is finally starting next week but we are still working for music or play therapy.

“He has been failed by schools and Surrey, we have a EHCP review next week and case worker warned that EOTAS are a short term intervention, which is not correct, so we are not anticipating that it will become any easier.” 

“I have a 10 year old boy who’s been out of school for the best part 2 years and 5 months,  he’s only attended around 10 (reduced timetable sessions) at a specialist school during that time.

Before attending specialist school he had been a pupil at an infant school where his needs were barely acknowledged, and where the SENCO kept promising she would apply for an EHCP but never did. 

He then attended a junior school for a couple of months and it  got to a point where  he had daily meltdowns and. fight or flight behaviours after being picked up. School, yet again, did barely minimum despite diagnosis at this point of ASD, SPD and Anxiety. “

“I’m the parent of a five year old girl in her reception year. She has an autism diagnosis and EHCP with a placement at an autism unit within a surrey maintained mainstream school. - We’ve been raining our concerns about out daughter’s  increasing school anxiety since October. Her anxiety really started around the school’s ’behaviour ladder’ after the experience of receiving a time out due to  stomping her feet in assembly (we say likely to sensory dysregulation  however school deny this was the cause because they showed a visual   “stop” card, and she decided to continue).

School deny any EBSNA problems because she is “fine in school”. At home, she’d been having daily meltdowns, and also bedwetting, etc.

As her school anxiety was increasing, they also phased out her known adult support in her “inclusion” (mainstream class) sessions.”

“biggest help was Freemantles outreach doing an observation and attendance at meeting with the headteacher that previous gas-lit us as parents.

  • School then agreed:
    • someone coming out of the school door to engage her to come in the door happily.
    • known person to go to her inclusion (mainstream class) with her.
  • School will not consider any changes to their behaviour approaches to something that is not reward/consequences based. Instead they have decided it would be best to offer her a social story to help her understand behaviour ladder. (I’ve already pointed out to them the research on these approaches being particularly harmful to those who are ND or trauma-experienced).

We had a great 6 days, most of her changed behaviours disappeared (bedwetting, etc) then school decided it was ok for known staff to leave her halfway through an inclusion session because she was happy. She has returned to school avoidance since.”

“Education around the best inclusive practice in the area of Emotional Regulation policies instead of behaviour policies is key. Also, training around neurodiversity/ masking/ importance of access to safe people for those with extra sensitive nervous systems”.