DID YOU KNOW?
- Children with mental health needs so severe that they’re classified as SEN are 17 times more likely to be educated in Alternative Provision schools rather than mainstream.
- Children with school-identified SEN are five times more likely to be permanently excluded than their peers without SEN.
- Over 1.7 million pupils in the UK have SEND (18.6%)
- Data from the Children's Commissioner's suggested 13,100 children had left state education between the spring terms of 2022 and 2023, to be taught at home. Nearly one in three of those were SEN children.
- SEN is thought to affect boys more than girls. 72% of pupils with an EHC plan in 2024 are boys, and 62% of pupils with SEN support are boys. But studies into the way girls mask their symptoms are becoming more popular.
- Pupils with SEND are more likely to be eligible for free school meals. 42.2% of pupils with an EHCP and 38.3% of pupils on SEN support were eligible for free school meals in January 2024 compared to 21.4% of pupils without SEND.
This doesn't define you
What do Stephen Hawking, Sir Richard Branson, Michael Phelps, Daniel Radcliffe, Sir Ken Robinson, Whoopi Goldberg and Tommy Hilfiger have in common? They all identify as having SEND and they are all thriving, or thrived, as some of the best in their chosen field. Too often SEND automatically becomes synonymous with poor performance and potential, but in so many cases, the opposite is true. Whether that is Tommy Hilfiger dealing with dyslexia in school and going on to become a world-leading fashion designer, Stephen Hawking being diagnosed with motor neurone disease (ALS) at the age of 21, and going on to become one of the most influential scientists in history before his death in 2018, or the entrepreneur, Sir Richard Branson, who is also dyslexic and is now worth $2.66 billon; being neurodiverse should not be an automatic obstacle to education and opportunity. However, for the hundreds of children and young people currently out of mainstream education due to SEND in the UK, losing months or years of engagement and inclusion, this is simply not the case.
WHO ARE WE?
Our history
Founded in 2002 and registered as a charity since 2013, SOS!SEN was set up by a group of professionals who were frustrated by the unfairness of the SEND support in schools process. They set up a free helpline for parents in a small area of London, but the popularity of this helpline quickly grew, with parents ringing for advice and guidance of areas all over London.
Where we are now
SOS!SEN supported over 3400 families in 2024 to navigate the overwhelming legal system, supporting children and young people (aged 2-25) back into education. In 2025 we predict we'll support 5200 families. We're a growing, passionate team, with 10 paid staff members, but over 90 truly amazing volunteers that help us run our services.
The journey for many families with SEND can be long and isolating. When a school, college or nursery can’t meet the additional support required by a child with SEND on their own budget, an EHCP (Education, Health and Care Plan) is required. This is a legally binding document outlining a child or teenager’s special educational, health and social care needs. The document has to list all of the child’s special educational needs, and specific ways a school and local authority will meet them. In 2023, only 50.3% EHCP’s were issued within the statutory 20-week time limit and there were 15,615 appeals registered.
That means 15,615 families saying that the school provision for their child simply wasn't good enough and standing up for their child, giving them a voice.
SOS!SEN is at the forefront of supporting these EHCP processes and appeals, ensuring parents and carers can navigate the process with advocacy and confidence in the rights of their child.
Find out more through our website - www.sossen.org.uk
A FAMILY'S STORY
"When our daughter was born a tiny 5lb with a very rare complex syndrome and the battle for her to get the correct medical care started, I felt like I was drowning every day, but I trod water and gave the impression I so was coping.
Little did I know when it came to my child having the right as every other child to go to school, to have an education and make friends, that’s when the true nightmare started.
Being told by the Local Authority that my SEN child should stay at home on the sofa until she was statutory school age made me sad, but most of all angry.
The only way I can describe life as a SEN parent trying to get the right placement and provision for them to progress, is like a minefield of bombs going off and you’re trying to dodge them everyday. Just as you take a rest to breath another bomb is chucked and the battle starts all over again; it’s simply exhausting!
The mass of paperwork and the fact you can’t trust the people that are supposed to support your child, makes you start to second-guess people. It changes you so much as a person, and people don’t recognise you anymore, because you put your entire soul into fighting for your child’s rights.
The light for me at the end of the tunnel was SOS!SEN. Finally a charity that truly understands what a SEN parent deals with everyday. I made many calls to the SOS!SEN helpline in the early years and still do to this day; being able to ask advice from a real person was a relief. I have attended conferences to learn how to navigate EHCPs, watched webinars, read valuable information from the website, ordered booklets, booked services such as EHCP checks and rights of appeal documents and even had 1:1 advice appointments.
SOS!SEN now offer walk-in Advice Centres all over England and, for any parent speaking with someone sat in front of you, listening and truly caring, this makes such a huge difference.
With SOS!SEN'S services guiding me through the tribunal system and their continued support, my daughter was finally in a full-time placement and flourishing - exactly what every parent wants for their child and what every child deserves, whether they have special needs or not.
With the growing need for SOS!SEN services the pressure of parents contacting them must be HUGE but they continue to dedicate time to us and for that I am truly thankful.
Unfortunately although no-one should have a life like this. The battlefield will continue to chuck unwanted bombs at me, but I will continue to navigate my way round them, knowing I have the invaluable support of the charity SOS!SEN giving me strength to do so."
