You may have noticed that we’ve shared a number of social media posts about the Stockport SEND review so we decided to write a quick(ish) post to share some additional information and encourage local parents to take part in the process.
In September 2018 there was a joint inspection carried out by Ofsted and CQC to look specifically at how Stockport handles special educational needs and disabilities (SEND) The inspection did not go well and the end result was that Stockport, as an area, was told in no uncertain terms that they need to do better. The inspection included educational settings, NHS services and Social Services. They have been given a specific timescale to respond to Government Ministers and have to produce a Written Statement of Action to lay out exactly what they are going to do to improve. The full inspection report is available on the Stockport Clinical Commissioning Group website.
Following the release of the report, a number of feedback sessions were held in December at Stockport County Football Ground to capture the views of local parents and carers about their experiences. As a group, we here at SPACE Stockport encouraged as many people as possible to attend. Our team have been to every session and will continue to do so and hope that others will do the same, for the very simple reason that in order to get better, Stockport needs our input and we as parents need to take advantage of this opportunity. The inspection looked at the lived experience of families in Stockport and it wasn’t good enough. There were serious weaknesses and a lack of involvement.
There were a number of criticisms laid out in the report including:
Parents not being listened to, and sometimes feeling blamed (parents regularly being blamed)
Parents exhausted by the need to fight for services
Parents experiences have not sufficiently informed developments
Inequalities in support eg differences between schools, particularly at SEN Support level is driving an increased demand for EHC plans and special school places.
Heath waiting times and services
Support received at crisis rather than early intervention
Lack of effective and respectful joint working, including a professional hierarchy
This is our opportunity as parents to influence the process and have our voices heard. It should not have taken a failed inspection, before all affected parents were asked for their input, but this is the position we find ourselves in, so lets make the most of it and help ensure that future plans are fit for purpose. Those responsible for responding to Ministers are asking for information and are collecting case studies and we hope that local families with ADHD will be amongst them.
Stage One – Feedback Sessions
At the feedback sessions in December there were lots of opportunities for parents to ask questions and raise concerns based on their own experiences. They were also given the opportunity to share views and raise issues online and by email. Lots of the issues raised at the initial feedback sessions echo the criticisms highlighted in the report and produced some serious food for thought.
There were a number of issues raised about Education Health and Care (EHC) plans with one observation being that Stockport has a higher than expected number of requests for them. EHCPs have become a so-called “golden ticket” that will ensure that children receive the support they need in school, which is the result of some schools refusing to put support in place for a child without one. There are some schools where children with EHC plans aren’t necessarily receiving the support that has been agreed and there are other children who are being denied them because they are not far enough behind their peers in educational attainment to be granted one, despite serious struggles with social issues. Overall the impression is that parents “want” EHC plans, but all parents actually want is the necessary support for their children and for some the EHCP is the only way to get it.
EHC plans were just one of the recurring themes brought up during the initial feedback sessions. Many parents shared their frustration about not being listened to by schools and NHS service teams. Parents are usually the experts about their children and this knowledge is frequently completely ignored by professionals.
Despite the very obvious negatives there were some positives in the report. Stockport has lots of people who are committed to making a difference in children’s lives, but unfortunately without enough involvement from parents, children and young people, a lot of that hard work has been missing the mark.
Stage Two – Focus Groups
After the initial set of workshops to capture feedback the next stage of the process was to move onto focus groups, the first of which were held this week.
The focus groups were held at Stockport County and involved lots of group work. Rather than being obviously led by the team of professionals, each table had a facilitator to ensure the maximum amount of input from parents and carers. All attendees were encouraged to capture the information on paper which was added to large boards around the room. The boards were photographed by the main facilitator and the information will be recorded and details shared on the Local Offer webpage.
The Local Offer
The Local Offer (sensupportstockport.uk) is an online portal that should contain all the information about available information and support services for those with SEND in the Stockport area. Unfortunately despite it containing lots of useful information most parents and lots of professionals didn’t know about it and many of those that did, didn’t find it easy to navigate. Our team didn’t know a great deal about the Local Offer despite our details having been on there for quite some time!
At this week’s focus group we were told that there will be changes made to the site, which will make it more accessible to both families and professionals. Every area has their own Local Offer page and they intend to look at some of the better examples for benchmarking and inspiration.
Feedback on the SEND Review process and opportunities to contribute via online surveys are available from the Local Offer website and for those who were unable to attend either of this week’s Focus Groups the online questionnaire is open until January 21st 2019.
Anybody interested in sharing their experiences as part of a case study should contact firstname.lastname@example.org who will make arrangements with you.
The SPACE Team will continue to engage with this process and we hope that this post encourages others to do the same. This is a real opportunity to help those in charge, change things for the better. Please don’t miss this chance to let them know about your experiences.
2018 was a busy time for the SPACE Team and 2019 is promising to be even busier.
We will of course be continuing with our monthly meet ups for parents and carers of children with ADHD and we also have a number of other events in the pipeline. We’ll be meeting up at Funky Monkey tomorrow (Wednesday 9th January) for our first monthly meet up of the year.
January is a great time to plan ahead so if you are one of our SPACE parents make sure that you get these 2019 parent meet up dates in your diary.
This year we’re aiming to add more content to both our main website and this blog so make sure you keep an eye out.
Happy New Year and we look forward to seeing some of you tomorrow evening.
Over the last few months we have been so busy doing things, that we haven’t had chance to write about any of it, so here’s a whistle-stop tour of what the SPACE Team have been up to. Apologies in advance for the sheer volume of notes. For those of you who prefer highlights we’ve condensed the last few months into the following bullet points.
We ran our own conference The World of ADHD According to S.P.A.C.E.
We attended the ADHD Foundation’s ADHD Conference in Liverpool
We went to The Houses of Parliament to attend the All Party Parliamentary Group for ADHD meeting and spent time with the Shadow Secretary for Education Angela Rayner
We attended a Thank You event with PIPStockport to celebrate their tenth anniversary where we were recognised for our partnership with them.
We started making the necessary changes to our structure and admin functions, including some changes to our websites, blog and mailing lists.
We started to turn some of our day dreams into real life plans.
The SPACE Team at Westminster
The World of ADHD According to SPACE Conference
SPACE ADHD Conference
Daniel Johnson MSP ADHD Foundation Conference
SPACE and Tony from the ADHD Foundation
SPACE & Neale from Our Boards
ADHD Mind Wandering Slide
SPACE , Jacki Cairns and Tony from the ADHD Foundation
Quote about Autism in Girls
SPACE and Dr Peter Mason
quote by Professor Francesca Happe
Reigning ADHD by Artist Jacki Cairns
SPACE and friends from the ADHD Community
SPACE and Andrew Whitehouse
So as you can see, it’s been a busy few months for us here, especially considering that we currently operate as a team of volunteers with no source of funding, both of which bring their own set of challenges. There are activities that we can’t do due to a lack of time, activities we can’t do due to a lack of money and we are constantly learning new skills to ensure that our organisation is able to meet the challenges that we have to face head on. The SPACE group started in 2004 because what parents needed at that time didn’t exist, so they created it and over time we have changed and adapted and we have no intention of slowing down now.
On Friday 19th October we ran our own conference – The World of ADHD According to S.P.A.C.E. and despite the usual pre-event panic and the initial worries about ticket sales, the event was a roaring success.
We set out to produce an event that was suitable for both parents and professionals. We wanted to create an event which provided information about ADHD that was useful and allowed for reflection. Without understanding the background to ADHD it is hard for both families and teaching professionals to understand why children with ADHD behave the way that they do. If an adult believes that a child is choosing to behave in a certain way then their management of that behaviour is very different to how they manage disruptive behaviour that a child genuinely can’t help.
ADHD is a neurobiological condition and yet school policy is often informed by official SEND documentation that lists it as a set of behaviours, rather than a difference within the brain. Most people do not know the facts about ADHD and the enduring stereotype of naughty boys throwing chairs continues to steal focus from other presentations of ADHD, particularly those with the Inattentive type. Misinformation and ignorance spread by certain parts of the media have contributed to the ingrained stigma surrounding the condition, all of which contributes to a system that fails children and leaves the adults responsible for them without the necessary information and support.
We held our conference at the Guild Hall in Stockport with a handful of carefully selected sponsors at the back of the room offering products, services and information that was relevant to the audience on the day. We had a room full of parents, carers, young adults and those in the teaching profession who were all keen to learn more about ADHD so that they could take that knowledge away and use it to support local children.
Our guest speakers were amazing. They generously gave their time to write and deliver brilliant informative sessions and we could not be more grateful.
The majority of presentations from the day are available on our main website including a short film called Shine A Light on ADHD which we were given special permission to screen ahead of it’s official release on October 31st, the final day of ADHD Awareness Month.
All Party Parliamentary Group for ADHD
Throughout the year the SPACE Team have been supporting the initiative started by ADHD Action to raise the political profile of ADHD and the push for an ADHD Act of Parliament. In January we travelled to Westminster for the launch of the All Party Parliamentary Group (APPG) led by Jo Platt MP.
In October we returned to Westminster to attend an APPG meeting on Education chaired by Alex Sobel MP. We were aware that the Shadow Secretary for Education, Angela Rayner had been closely following the progress of the APPG. Angela has a personal interest in ADHD and was aware of our involvement because she has been a good friend of our very own Michelle for many years.
Notes made during the APPG
That ADHD is behavioural
That we don’t know what to do to improve the situation for those with ADHD
That effective assessment and intervention is expensive
Solutions include equipping teachers with the knowledge to recognise ADHD. We need to train teachers with effective strategies to manage chldren’s behaviour in the classroom.
Behaviour, even bad behaviour, is a form of communication
There is a loss of potential
40 young people are permanently excluded every school day.
Strategies are not being put in place following assessment and diagnosis.
The central guidance for schools is about sanctions and punitive solutions.
The word discipline actually means to teach, but education (and parenting) has moved away from that.
Statutory safeguarding training should take place and neurodiversity could form part of that.
There needs to be tools that explain a child’s difficulties to them.
Physically disabilities such as blindness are easier for schools to understand and manage.
There are gaps in the system.
There needs to be an end to schools “off rolling” pupils
We need to celebrate all types of learners
People need to recognise parents as advocates.
Children are still being penalised for neurobiological conditions that they can’t control.
“Pills don’t give skills” It shouldn’t be medication alone
Children need to learn how to regulate themselves and they need help with that.
Parenting a child with ADHD can be emotionally and physically wearing.
Parents can be left riddled with guilt
Parents are often overwhelmed.
This is our collective responsibility
There needs to be improved compliance with legal obligations for schools by raising their awareness of ADHD
There are independent review panels
Local authorities push back as far as they can on Educational Health and Care Plans (EHCPs)
The NICE guidelines includes information specific to girls and women with ADHD for the first time, calls to also include information relating to people of colour.
Early intervention plays a huge part in outcomes
Emotional disregulation is not included in DSM 5
Information from DSM is not included in the central SEND document that informs the policy for many schools.
In many cases Self Harm is the threshold for referral to CAMHS (Child and Adolescent Mental Health Service, known locally as Healthy Young Minds)
CAMHS are not accepting school referrals if children have ADHD, a decision which needs to be challenged as this is discriminatory and leaves young people with ADHD at serious risk.
More inclusive learning is needed in schools.
The perception that parents and young people with ADHD choose to miss appointments.
Parents may need support with techniques such as Time Management to help them support their child.
The criminal justice system contains nothing about ADHD despite the numbers of people with the condition being over represented within the prison population.
“Everybody working with children should be given training on neurodiversity” Angela Rayner
Look at the community of the school
ADHD doesn’t have to end in the criminal justice system
“Our children can be entrepreneurs or serial killers, it’s up to them”
Negative things at school can be prevented by interrupting the chain of events.
Children need a way to get rid of the energy they build up
The United Nations counts breaks as a human right, taking away a child’s playtime is depriving them of this.
Keeping a child in at playtime means that you are taking away their cool down time.
Find alternative approaches to taking away playtimes and breaks from children and young people.
“At the end of the school day it feels s though I’ve been let out of a cage” Oliver Age 12
Have different expectations for young people with ADHD
Schools need to be educated
We have to change the way that we view ADHD
Punitive approaches to education need to be removed
Fear of the label is unhelpful
We made the trip from Stockport and Angela made time to not only attend the APPG meeting, but also spent time with us at the Houses of Parliament afterwards.
ADHD Foundation Professional Conference
Last week we attended the ADHD Foundation‘s conference in Liverpool. As always it was a brilliant and very informative. We attended the Education Day and took the opportunity soak up knowledge from the Keynote speakers and catch up with some of our friends in the ADHD community.
The ADHD Foundation is an amazing resource for those with an interest in ADHD. They deliver training in schools and provide services to the NHS. Their website includes a wealth of information for both families and professionals including downloadable information sheets.
This year’s conference was focused on Neurodiversity and Mental Health and included information on not only ADHD but also lots of interesting material about Autism. It isn’t possible to cover a full day in a blog post, but here are some of the notes we made on the day.
Tony Lloyd – Introduction
Tony is the Chief Executive of the ADHD Foundation and delivered the welcome and introduction session.
The national conversation on ADHD is beginning to change
The neurodiverse paradigm is starting to challenge the outdated understanding of intelligence
We are moving away from a deficit model
ADHD is not an acronym for inappropriate behaviour
ADHD is a cognitive impairment
Daniel Johnson MSP Opening Address
Daniel is a Member of the Scottish Parliament and openly discusses his ADHD and how he uses medication to allow him to access it’s positives and control any potential negatives #Itakemypillsbecause When told that he was brave to be so open about his ADHD his response was “I’m not brave, but I am angry”
ADHD is over represented in the prison population which stands at an estimated 25%. Daniel identified at least one youth offenders institution with an ADHD population of 40%
Ultimately we need to make ADHD political
It is vital that we bake an understanding into education and social policy
ADHD is not in the same space as Autism and mental health
ADHD is a condition defined by it’s myths.
Any other condition affecting 1 in 20 people would lead to a national outcry
Treating ADHD should be a combination of Pills and Skills
The NICE guidelines are not clear enough in some areas
Daniel made reference to the recent negative comments made by Amanda Speilman (Head of Ofsted) about the alleged over diagnosis of ADHD and suggested that we concentrated on the facts.
We need to change the language around ADHD
All teachers should have training on both ADHD and Autism
Professor Barry Carpenter CBE OBE PHD – Keynote Session
Let’s keep all children mentally wealthy
Let’s not wait for the self harming to begin
Teachers need new tools
Children with ADHD have a “spikey” profile of learning which presents challenges
Engagement is the goal “the engaged child is a learning child”
An study of premature births found that 66% were diagnosed with ADHD
“By 2020 Depression will be the most prevalent childhood disorder” Pretis & Dimara 2008 and Knapp et al 2007
Referring to the opportunity to raise awareness and make changes “This is the day in the sun for mental health”
Teachers are going to have to learn [how to support with mental health] on the job
1 in 5 children have SEN, but children with SEN are three times more likely to have mental health issues.
Eating disorders in boys have now outstripped eating disorders in girls.
Anxiety is a key block to learning. It can prevent the imprint on the brain (McCulloch 2008)
Even the colour worn by a teacher could be a trigger for some children
The anxious child is not a learning child.
Exercise is good for you
Don’t keep children in a classroom for more than an hour – it’s asking for trouble.
“Schools are the critical environment” Royal College of Psychiarists
Paula is a Principal Educational Psychologist at Place2Be The Place2Be website includes a number of downloadable resources for primary schools, secondary schools and youth groups.
1 in 10 children has a diagnosable mental health problem equivalent to 3 children in every classroom.
50% of adult mental health illness starts before the age of 14
93% of school leaders are unable to access specialist mental health support for pupils when they need it.
Having a diagnosis means that children’s mental health needs are associated to their diagnosis.
The Transforming Children and Young People’s Mental Health Provision green paper suggests that there should be a designated mental health lead in schools signposting and raising awareness.
Place2Be has a service called Place2Talk which can be used as part of a whole school approach.
Barry Carpenter – Girls on the Autism Spectrum Session
World Autism Day takes place on 2nd April 2019 and the focus will be on girls with the condition.
New book – Girl’s on the Autism Spectrum; Flying under the radar. Book is being launched on World Autism Day.
Girls and Autism – educational, family and personal perspective, a girls and Autism booklet is available on his website.
The ratios of ASD prevalence are incorrect which has led to diagnostic overshadowing and misdiagnosis.
Women and girls are explicitly excluded from research on Autism as researchers expect low numbers due to ratio inaccuracies.
Research on Autism is disproportionately based on autistic males.
Girls with Autism are girls first
Girls with Autism present differently to boys and often mask or camouflage their problems and internalise aggression.
Scripting – the practice of girls knowing what to say in a certain situation without necessarily understanding the situation fully.
“Thou shalt learn to read by Phonics” this approach won’t work for everybody and some learners need different techniques.
There is a need for more female specific research on Autism.
M is for Autism is a book written by the students of Limpsfield Grange School and Vicky Martin
Rory is a world famous comedian and impressionist, he is also Patron of the ADHD Foundation and a campaigner for a better understanding and treatment of ADHD. Rory has publicly spoken about his adult diagnosis of ADHD and took part in a Horizon Documentary.
ADHD is not a deficit of attention, if anything it is an attention surplus.
Rory’s letters for ADHD would be
(We did of course tweet him pictures of our ADHD Champion hoodies with our personal ADHD words printed on the back that we wore at last year’s conference)
“We are the pathfinders and the creators”
We need to frame ADHD differently.
It’s not our inability, it’s society’s inability to get the best out of us
Don’t allow your ADHD to overwhelm you.
Loving and understanding children is the most important thing. Just let them grow naturally. Just love them.
“Best advice – be yourself. You beat yourself all the time. Stop. The challenge is to learn where it’s a problem and embrace it’s assets.”
Simon Bignell Senior Lecturer in Psychology and Author
Between 20 and 50% of children with ADHD meet the criteria for Autism
30% of children diagnosed with Autism meet the criteria for ADHD
We were frankly so busy enjoying this presentation that we didn’t make many notes!
When teaching children you need to engage their “giveashitometer” Children need to be engaged.
When working with children who have a long list of behaviours that you’d like to change rather than tackling all of them all once
Pick 3 behaviours that you would like to change.
Grade those behaviours as Top, Middle and Bottom
Pick the bottom one and work on that particular behaviour first.
Put strategies and rewards in place and focus on the chosen behaviour. Help the child to achieve, celebrate their success and then move forward to looking at one of their other behaviours.
SPACE Online Updates
The work on our website, blog and other online stuff is ongoing whilst we update, redesign and rearrange the content. We are reorganising our online content and we will be adding more information over the coming weeks. No matter how many changes we make and regardless of how often we change it’s look, the website will always display the details of our next parent and carer meet up.
And that ladies and gentleman is at least half of everything we’ve been doing over the last few months. Apologies for the sheer volume of notes, but too much seemed better than too little, especially when there were so many pages! Now that everybody is up to date on where we’ve been and what we’ve been doing, we’re going to try and update our blog more often so – watch this space.
The summer is now over, the school year has restarted and the SPACE Stockport monthly meet ups restart this Wednesday. We’ve had an unusually long summer break of two months due to the refurbishment of Funky Monkey where we hold our meet ups, but this week we’re back to normal and if you’re the parent or carer of a child with ADHD, the second Wednesday of every month is a date for your diary.
The start of the school year is the chance for a fresh start, but unfortunately for many families with ADHD children it can be the start of another school year filled with negativity.
The team here at SPACE are particularly pleased to see an increased focus within the guidelines on the diagnosis and treatment of girls and adults of both sexes. A common ADHD myth is that the condition only affects male children, which is now known to be completely untrue.
There are a number of common misconceptions about ADHD, particularly the idea that it is solely a problem of behaviour, which leads to the common stereotype of naughty boys shouting and throwing chairs. Whilst there are many cases where this is true, it completely ignores anybody that doesn’t present with those symptoms which creates a serious problem for those who have the Inattentive form of ADHD. The new guidelines includes a reference to attention issues, under recognition, highlighting the fact that ADHD is not a behavioural condition, despite the fact that it is often challenging behaviour that is most widely recognised.
By only recognising challenging hyperactive behaviour, children who are well behaved in the classroom and able to maintain a reasonable level of academic attainment are left to manage without support. This can lead to them fighting internally to control their behaviour during the school day and “exploding” the minute they get home.
Internalising the effects of undiagnosed ADHD is also a problem for adults, particularly women and there are large numbers of adults presenting with mental health complaints, which actually stem from a lack of diagnosis and support for ADHD.
The updated NICE Guidelines are for healthcare professionals, medical commissioners, those with ADHD and their families and carers. Outdated information is responsible for many people not receiving the support they need to thrive and we are pleased to see that the updated information from NICE recognises a number of factors which were not present in the previous edition, including a recognition of the hereditary factory. We are hopeful that this will lead to an improvement in diagnosis and training and lead to better outcomes for families with ADHD.