SEND Improvements – What you told PPCV

Thank you to all the parent carers who responded to our questions relating to the SEND improvement plan for Plymouth as a result of the “widespread and/or systemic failings” (Local Area Partnership report, 2023) that our children and young people with SEND are experiencing in Plymouth.

Our volunteers read every single response and your feedback was presented at 2 focus group meetings in September. (It was great to meet the parents who could make either 1 or both of the meetings!) For transparency and for your information, we have collated your feedback and have presented it below – be ready for a long read! (Don’t forget, you can access the speech player on our website if you prefer to listen rather than read.)

We have tried really hard to list themes (many of which were repeated by a number of families) without detailing personal stories. We may not have used your exact wording, but we have done our best to get a feel of what you have told us.

If you feel we have missed something or missed the point you were making, please accept our apologies and let us know. We will then update the list and share the information at our next focus group meeting (which you are warmly invited to attend).

So…this is what you told PPCV:

What could education leaders do to stop children/young people in Plymouth with an EHCP getting to the point where they are excluded?

• Flexibility with policies
• Understanding and implementing reasonable adjustments (flexibility with uniform, toilet breaks, movement breaks)
• Meet the child’s need before it reaches breaking point
• Actually follow section F on the EHCP
• Avoid disengagement by giving penalties to “small” things which can spiral to “bigger” things
• Encourage support instead of punishment (eg, if a child finds it hard to get organised and bring the right equipment to class, find a way to help them before sanctions are handed out)
• Provide an area for young people to go for time out, support, additional help or just to get away for 5 minutes if they feel overwhelmed, this would allow them to exercise the flight response when all gets too much in a calm way.
• Children should not be turned away from breakout rooms. If the breakout room is too busy, there is a deeper problem in the school that needs investigating.
• “Normalise” strategies that are in place to support children with SEND. (e.g. everyone can access the sensory toolbox; everyone gets movement breaks at regular points; everyone learns calming strategies). These strategies can benefit ALL children, not just those with SEND and children who need them won’t be made to feel different from their peers. It also benefits those who may have SEND but no EHCP.
• Small, targetted classes for those falling behind academically before they switch off and disengage, leading to poor behavoiur.
• Early SEND support to avoid children reaching the point of exclusion. This will also support those without EHCPs (particularly if they have SEND but are flying under the radar).
• Well-trained staff to identify needs, but most of all, action being taken to support the need before reaching the point of exclusion.
• Staff should go visit specialist schools, get the same level of training they get and see how it’s really done!
• One vital key is having enough QUALIFIED and EXPERIENCED staff to be able to provide the support.
• Enough qualified and experienced staff who can spot the signs and avoid the conflict/meltdown before it happens. Ensure that children are not being pushed to the edge before they reach the point where they can’t cope anymore.
• Make the environment feel safe for our children. A huge school with too many people moving around at once and the added pressure of having to reach a certain place at a certain time does not feel safe.
• Understand that isloation and restraining is not the help children need.
• If a child is struggling, schools should not wait until diagnosis to support them. Work should be sent home if appropriate for the child/young person and their family. This situation should not have to wait until formalised by the S19 panel.
• More training and understanding in relation to SEND. Then APPLY the training (eg, don’t just tick the training boxes and declare yourselves “trauma informed”).
• Work with parents instead of treating them like the enemy.
• Ensure schools understand that they do not have to wait for a formal diagnosis to put support in place.
• If a young person is at risk of exclusion due to a presentation related to their condition, ensure parents know this should be listed on the EHCP to prevent exclusion on that basis and ensure adjustment is registered and made accordingly.
• Question if reward points system is good or not, it puts so much pressure on children that can lead to very high anxiety.
• Follow your SEND and inclusion policies – don’t just advertise them on your website.
• Positive relationships with families (before exclusion is even considered and everyone starts getting defensive)
• Therapeutic approaches led from the top: local government/leadership teams.
• Be brave to recognise that higher level policies are causing schools to be too outcome-focused – this does not help children with SEND.
• Put plans into action.
• Recognise that “bullying” and “banter” are different and disproportionately affect those with SEND.
• Stop “corridor teaching” for SEND with the least-qualified staff.
• SEND is not “too hard” to bother with. This view appears to be driven by outcome and cost focus by management.
• Understand masking and research that relates to adolescents.

What do health services need to do to make sure your child’s needs don’t get worse whilst they wait to be seen?

• Offer parent carers access to a helpline so they can ask questions. Make sure the helpline in manned by real human beings who are professionals in the area.
• Give correct information at the point of contact. (ie, don’t tell them that they will be seen soon when the waiting list is a year long.)
• Check in with people while they are on the waiting list. (This could be phone or post or email – each family will have a different requirements – we know that one size does not fit all.)
• Also, check in with the school or setting too to offer strategies.
• Provide training courses (but please don’t call them “parenting courses” – to a parent, it suggests you are a bad parent!)
• Regarding training courses – tell people that they are available. Share the information regularly.
• Regarding training courses – make them suitable for the individual need that is related to the child’s SEN. (As one parent put it: the online parenting course offered to us was embarrassing.)
• Support workers want to help, so give them the right tools and up-to-date information (ie, suitable courses, not just “general” parenting courses.)
• More staff to get the waiting list down (rather than not accepting new patients to get the waiting list down).
• The SALT and Sensory questionnaires should be completed as part of the introductory phase when first referred as would help pick up neurodiverse issues a lot earlier. In the ideal world these would be completed at primary like they do SATs as part of understanding themselves and the world. Earlier understanding would have made a difference for many families.
• Ensure schools understand that they do not have to wait for a formal diagnosis to put support in place. If some time out of school is required, home learning should not have to wait until formalised by the S19 panel.
• More checks to ensure medication is correct for child/young person.
• Keep parents informed (current waiting times, support available). Remember that the message needs repeating – bombarding people with lots of information just once isn’t effective.
• More diverse therapies offered by CAMHS. (Research shows CBT is less effective for autistic children and children who have experienced trauma yet that is CAMHS’ offer and you have to jump through the hoops to get access to anything else.)
• Informed support workers
• Up to date information. (Some of the information being distributed by CAMHS is years out of date and desperately unhelpful.)
• Reduce waiting times with more staff.
• Face to face support is needed, someone that understands or can sympathise with what you are going through without being judged.
• Triage
• Post-diagnosis support
• Route to access an early review of medication if something goes wrong.
• Give families a choice (eg, family therapy)
• Give parents reports the same value as schools. Parents feel that their reports are diminished when children are “OK at school”.
• Transparency over waiting lists – publish it on your website.
• Access to Physiotherapy.
• Access to holistic diagnosis rather than one service at a time. This will help with diagnosis overshadowing (eg, looked-after children).
• Make and maintain the POD (Plymouth Online Directory) to a high quality with up-to-date info that is regularly checked. Let people know about it. With Facebook, Google and peer groups being the first point of call, some information can be wrong, misinformed or out of date.

What can health services do better to reduce waiting times?

• Employ more qualified staff at CAMHS.
• Employ more qualified staff at CDC.
• Triage systems taking into account additional need as well as medical presentation.
• Investment.
• Avoid wastage (ie, sharing the same info over and over again takes time out of appointments).
• Screening in education settings for neurodivergents. Early diagnosis and needs that are met would reduce mental health support required later.

What can social care services and PCC do to make sure that children living in residential homes get the care and assistance they need?

• Regular visits from family.
• Regular visits from professionals to ensure they are safe and being treated well.
• Having check list of most important things children need.
• Making sure there needs are being met.
• Communication together with people involved and families.
• Communication with school and other places the child goes to.
• Make sure the child or young persons voice is heard particularly regarding red flags.
• Improving safeguarding.
• Better vetting for staff.
• Don’t just leave people there without a plan for a meaningful future.

What would a social care assessment look like for short breaks?

• A face to face interaction/assessment where decision makers meet the children.
• Families should be helped before reaching breaking point or at risk of acting regrettably through pure desperation (before the word “safeguarding” is banded around)
• Carried out earlier before breaking point is reached.
• Let parents know that this service is available (because many don’t know that they could qualify)
• You would not be ping-ponged around between gateway, threatened with social services and back to gateway again.
• A clear, understandable system. (The current one puts already vulnerable people at higher risk of abuse.)
• If multiagency was involved assessments could be taken from professionals.
• Health and safety for the young person.
• Wellbeing.
• SMART plans.
• A connected system – communication between staff and departments.
• Direct payments – actually load the card.
• Short breaks provider will be assessed for suitability.
• Reduce the stigma of a social worker being assigned to the family to help.
• Work with the young person so they understand why they are accessing short breaks.
• Make short breaks be seen as a positive thing.
• Make the short breaks experience positive for everyone.

What information do you think leaders of health and education services need to plan their services better?

• Whatever it is, needs to be shared. What happened to “Tell it once”?
• Which schools are off-rolling? There needs to be accountability for this.
• Which schools are “suggesting” that families “look elsewhere” because the school can’t meet their needs. You need this to support schools that are not good at inclusion.
• Which schools are doing inclusion well. They need to be training others and be supported to continue to do their good work – not be used as a place to “dump the SEND children”.
• Listen and act and check rather than assume
• Staff supported with up-to-date information. Staff do spend time training but often training feeds stereotypes, is through a neurotypical lens and is not up to date.
• SEND must be a whole school approach and not an add-on or behave as an extra department.
• Trauma-informed approaches that are meaningful and embedded in practice. Not just a line in a behaviour policy and then an entire behaviour policy that is not trauma-informed!
• Early detection is key for a lot of children but this requires expertise and resources. Building positive relationships with parents helps.
• Accountability of MATS with their “managed moves” (a legal form of off-rolling)
• Understand that large MATS are limiting parental choice of schools – if the culture in a MAT is not positive for a child with SEND, the culture will be passed around the schools within it.
• Understand that schools are not businesses. Good inclusion is not too hard/too expensive to achieve if there is a change of this culture.
• Genuine co-production is needed.
• Write the plan, make it public (and accessible) then deliver it. We appear to have a lot of “assess and plan” but very little “do and review”.
• Services should be working together.
• Specialist departments in mainstream schools should be re-opened. But this should not override inclusive cultures.

What would good communication look like for children and young people with SEND?

• A ‘tell it once’ system so support is built on rather than keep having to start over. It would also save time during valuable appointments. (You can often lose 20 mins of a 1-hour appointment going over information that you know you have already told them in the multiple reports that you have sent.)
• Families will tell their story once. The information will be uploaded to a hub. This information will be able to be accessed by family (so they can update it) AND all of the organisations. BUT this would not be used as a replacement for talking to someone directly.
• Emails being responded to
• Phone calls being returned.
• Being copied into emails between professionals.
• Minutes of meetings available in a timely way.
• Cross-county co-ordination would exist (Cornwall/Plymouth; Plymouth/Devon)
• Organisations working together to share SEND information. (Eg – SENDCOs can share relevant info to parents – PCC would have to help them by putting the information in a way that will engage parents.

If children and young people were at the heart of the SEND plan, what would it look like?

• The plan will offer solutions that genuinely benefit children, not just “easy measurables” (eg, measuring attendance doesn’t measure the quality of the experience; measuring a reduced number of EHCP applications doesn’t mean the need has gone away or quality teaching for our SEND children is taking place).
• More funding for more staff to get waiting lists down.
• Funding for support around mental health and resilience.
• More inclusive cultures around mainstream schools. (Although I think this will not be taken seriously until schools are inspected differently which means they are not always focusing on test results.)
• Look at “need” before “cost”. If support was in place at the right time, it may even save you some money! And please don’t tell me how expensive my child is to educate – there is a big chance that this is a result of the system rather than his needs…
• Long term funding for staff and support and training
• Families would have positive and productive communication with PCC/education settings regarding SEND. One size doesn’t fit all – some families prefer face-to-face, some prefer email, some prefer telephone conversations with a consistent member of staff…
• More roles would be created alongside James Cook at the CDC so that more children receive the same incredible support he provides to families.
• Legal timescales for the EHCP process would be met. Provide transparency to show this. (Surely this information is already available and easy for PCC to access and publish?)
• If legal timescales are not being met, find out where/why and put something in place to correct it.
• Provisions for SEND would not just be listed on an IEP/EHCP, they would be provided by qualified and experienced staff.
• Plymouth SENCOs all have mandatory autism training (PLUS early career support) in particular around autism in girls and masking.
• That the senco’s make EHCP applications more readily. They should not be under pressure to reduce a request for help and additional support.
• That all consultants at Derriford Hospital with direct contact with autistic children are given training and better engagement from derriford autism service.
• Not really needing to go down the EHCP route to get the right support in classrooms for your child with SEN needs.
• All teachers trained more in SEN and monitored with teaching practices, not just a SENCo.
• Every classroom to have a teacher and a TA.
• SEN friendly classrooms and learning.
• SEN should be celebrated in schools, not treated as “too hard” or “too expensive”.
• All schools including trusts to be accountable to the local authority and an open, effective complaints process when things do go wrong with SEND, in particular with trusts!
• All pupils to receive the right exam support, best for child not the school and once in place can not be withdrawn by the school and can not adversely affect the pupil.
• A parent advisory service that is fit for purpose.
• All schools to have an effective outside monitoring body that ensures they are implementing the graduated approach with accountable timelines.
• Study /revision skills, assistive tech and organisation taught throughout secondary school in particular for pupils with SEN not just an add-on when pushed for or within the last year.
• Would like to see an exam system that is fair, a system that measures pupils’ true knowledge and capabilities over the course not just within a few weeks.
• We are experiencing an expondential rise in mental health crisis in young people and NEET so surely this indicates our education system and young people support lacking.
• Trusts are running schools and making a profit yet children are going without. Accountability and a culture change is needed
• People making decisions actually seeing the daily struggles these children have to go through at school just to get an equal education
• Families wound not constantly be having to fight for everything
• EHCPs that are fit for purpose and reflective of children’s needs
• Level playing field for SEND children – not expecting them to “make do” and be grateful for the little support they may actually have.
• Support in place before parents beg for help.
• Acknowledgement on the huge mental health impact it has on whole families when they are expected to fight, are not listened to when children are in an environment that is harder than it needs to be every single day.
• Having what’s in the EHCP carried out and kept to!
• Meeting the children first hand and seeing what problems and issues we can overcome together. Things are often very different in real life than to what’s written on a piece of paper
• There will be evidence of reading and implementing plans/reports for our children. Action plans that are actually carried out.
• Cross-county co-ordination will be improved.
• Needs to be supported before diagnosis. Just because a child isn’t diagnosed and meeting their milestones, doesn’t mean they are not SEND.
• Less families fighting for what their children are entitled to. (Appeals and tribunals)
• Having help even though my children’s disabilities are physical rather than cognitive.

From a family perspective, what outcomes are important and how would PCC know they are getting it right?

• Children with SEND should be given the opportunity to be on a level playing field with their peers. Outcomes will improve and the gap reduced if this is done right.
• There will be better school attendance (but not through sanctions on the families – it will be done through supporting them and through understanding and change of school cultures)
• Less exclusions due to correct support in place
• Less pressure on specialist provision places if young people are better supported in mainstream settings. Re-open the closed units and put the right, experienced staff in place.
• Support in place for behaviour and academic learning.
• Mainstream schools to be accountable for: number of SEND children in school (more children means more to celebrate); number of SEND children who have left the school due to inadequate support (Why? Put it right.)
• MATs to be accountable for number of SEND children in school (more children means more to celebrate); number of SEND children who have left the school due to inadequate support (Why? Put it right.)
• Children with SEN would be getting the appropriate education in a school that meets their needs.
• Waiting times would be dramatically reduced
• While waiting, more face to face support would be available.
• Families would receive meaningful support before reaching absolute breaking point – being given links to online parenting courses is a lazy way out.
• Much more accessible signposting to the support available – make the support actually available at the end of the signposted route. (Lots of signposting going on, but not a lot of support.)
• More listening to parents rather than dismissing them.
• Children would be happy and not suffering so much with their mental health – good support and inclusive education would support this to reduce waiting lists.
• That Plymouth CC do NOT reject every EHCP application as a matter of course, often to then U-turn a week or two before a tribunal.
• Make the numbers of tribunal applications and their outcomes public so we can see the improvement…?
• The EHCP process for Plymouth families is made clearer and transparent.
• Stop breaking the law. Accountability for u-turn decisions days before tribunals. Publish these figures so we can see improvement.
• Less families fighting for what their children are entitled to. (Appeals and tribunals)
• Better relationships with parents. (Words shared regarding treatment of families include: patronising, humiliating and frustrating.)
• There would be enough special school places to meet need.
• Special schools would take children based on their needs and school specialism (not just because the other special school is over-subscribed).
• Specialist centres which were in mainstream schools before the academy leaders decided they were too expensive to run would be re-opened. (You’ve declared a “profit” so spend it on children – that is supposed to be what you do.)
• Take the pressure off schools to manage children’s needs without an EHCP. If a child needs additional support, they need support.
• Investment in qualified and experienced staff throughout all services.
• A level of empathy from staff (SENDCos who actually care and are not just looking to further their careers.)

Did you know about the Healthy Child Programme?

Yes: 1 (because it was part of this person’s job, and also found out from health visitor and school nursing program)
No: 12

Follow-up questions – If no, how should this information be communicated to you?

• SENDCOs via school/setting via their communication app
• CDC via email
• Someone (PCC or school) could email me or send letter
• PCC could let the schools know and our school SENco could tell me about it

Do you know what the Graduated Response is?
Yes: 4 (includes at least 2 who have worked in childcare and education)
No: 3

Follow-up comments on Graduated Response:

• Some schools (in our experience) lacked evidence of using it
• Lots of “assess and plan” – not so much “do and review”.
• We were going around in circles with this, but the latest school has been good at this with lots of communication and regular meetings to change support as and when it is needed.
• All staff in my child’s school are aware of the plan.

What additional training is needed across PCC, education, health and care practitioners to provide consistent support?

• Mandatory neuro divergent training for all.
• To know that they should meet children’s needs while waiting for assessments.
• Identify needs earlier.
• Training in effective communication that is accessible for all (ie, not just links to government documents).
• Make sure SENDCOs know the EHCP process and legal obligations.

Photo by Ann H on Pexels.