Friday, January 9, 2026

Extraordinary Fundraising from Ultra-endurance Enthusiast and Guinness World Record Holder, Dr Tony Hopkin

Tony, smiling, running on grass with his two sons either side of him.

This month we spoke to Dr Tony Hopkin who describes himself as "a husband and a father to two amazing boys (one is autistic)". Tony is an ultra-endurance enthusiast who currently holds the Guinness World Record for the Longest Single-Event Triathlon. For the past couple of years, he has been raising money for SEND-related charities by undertaking ultra endurance events.

In 2026, Tony aims to take it up a notch by attempting three Guinness World Records and a world first ultra-triathlon. The Guinness World Records are the most duathlon legs completed in 24 hours (indoor), the most duathlon legs completed in 24 hours (outdoor), and the most consecutive days doing a triathlon (indoor); and the ultra-triathlon is to consecutively swim, bike and run the 13 publicly accessible lakes in the lake district, in what will be 72km of swimming, over 72km of cycling and over 72km of running.

 

Tony is doing this incredible set of challenges in support of three SEND charities, including SOS!SEN, which is wonderful - thank you Tony!


You’ve already achieved something extraordinary by breaking the Guinness World Record for the Longest Single-Event Triathlon earlier this year. What inspired you to take on ultra-endurance challenges in the first place? 


A few years ago, I stumbled into Triathlon after joining one of my wife’s friends for a triathlon with about 3 weeks training and having not swam or cycled in about 20 years. I just managed to get through a sprint distance triathlon (750m swim, 20km cycle and 5km run) but as they say, I got the bug! From there I started training all 3 disciplines and a year later, I signed up to an iron-distance triathlon (3.8km swim, 180km cycle and a marathon). After a conversation with a work colleague who said he would sponsor me for doing it, this then led to a charity effort, which spiralled into a year of endurance events (one endurance event each month for 12 months) to raise money for SOS!SEN. Over that year I did various things from ultramarathons to ‘grand fondos’ (big bike rides) to marathon swims to iron-distance triathlons. I enjoyed the challenge, found that I had a knack for ultra endurance in that I could train hard, recover well and endure pain, and most importantly I realised that I could raise vital funds for and awareness of charities who help support people with different needs or use ‘sport for purpose’. This ability to raise awareness and funds led to 2025 and the Longest Single-Event Triathlon world record, where I swam 16km, cycled 400km and ran 100km continuously.  


You kindly supported SOS! Special Educational Needs in 2024 by taking on a challenge each month. What drew you to our cause and the work we do with families of children with SEND? 


One of our boys is Autistic, and at the time my wife and I were navigating the complex world of diagnoses, SEND legislation, EHCPs, excessively long waiting times and our son struggling in school. This experience highlighted a number of things, such as: the general lack of knowledge regarding SEND and children with SEND (including my own ignorance pre-2024), a lack of mainstream support for children and families navigating this complex world; and a general lack of awareness of the issues within the wider system. Whilst we were seeking guidance, we came across SOS!SEN and the information you provide and found it invaluable and wanted to support your work.


What has your own journey as a father of a child with SEND looked like? Where did you find support? 


My journey started before I realised, my son has always had a lot of energy, was fidgety, sought sensory input etc. but at the time I didn’t realise why. In his 2nd year of primary school, everything started to become clearer when we were called-in to discuss a suspicion of SEND. He was referred to CAMHS and then the wait began; he continued his time at school with increasing meltdown and exclusions. To speed up our search to understand what was happening, we then took the decision to procure a private assessment where he was diagnosed as being Autistic. We provided the school with his report and started the process of attaining an ECHP, hoping for more acceptance and understanding, however, it became clear that the school he was at was not suitable for him – the exclusions were increasing, his sense of belonging impacted, and he felt extremely misunderstood. Fortunately, with his ECHP he has moved to a mainstream school with a specialist autism base attached to it, and he is happy and doing well – which is mainly because of his mum’s tenacity in chasing people to ensure they fulfilled their obligations. Most support and guidance came from community groups, charities, and paid for consultants and professions – there was very little from anywhere else.    


What’s the biggest lesson you have learnt as a Dad with a neurodiverse child? 


I’d say that it has redefined my view of what is important when it comes to my children’s futures. It’s not grades, it’s not going to university, it’s not a high paid job etc. What’s important is them being happy, them doing something they enjoy, them knowing they are loved and accepted, and that they accept themselves for who they are, and that they know that their future is their own.  


This year you’re aiming to break not one but three world records — can you tell us more about what drives you to keep pushing the boundaries of human endurance? And how many pairs of shoes do you get through?! 


I’m weird, I guess! No, I do these events for a few reasons: firstly, I want to show my children that anything is possible and that resilience can get you through things; second, I hope that by pushing the limits I can do some good and raise awareness of SEND (and the struggles people go through, and to celebrate difference); and finally, these events are symbolic. For example, the longest single event triathlon world record represented how society expects children with SEND to function: 


It was a challenge where you had to follow prescribed rules to the letter, and if you deviated from those rules then the outcome was that you had failed. 


It was a multidisciplinary record that required quick transition between activities (transitions could not last longer than 5 minutes) and if you couldn’t transition in time, you had failed.  


It was a hectic long-distance, multi day event where you needed to maintain focus and concentrate for the duration, you could have no rest or time to process what had happened before.  


To survive the attempt, I needed the same things many SEND children do: coping mechanisms to remain resilient, a support network who figured out my needs - even when I didn’t articulate them clearly; and a clear understanding of the expectations I had to meet and what was coming next. 


I run my shoes into the ground, but I do go through lots of socks! 


The Lake District challenge sounds breathtaking (mentally and physically!): swimming, cycling, and running across 13 lakes consecutively. What excites you most about this world-first attempt? How do you keep yourself focused? 


The Tri-the-13 as I call it, represents that children with suspected ASD (and a host of other needs and disabilities for that matter) are waiting significantly longer than the 13 weeks the guidelines state they should wait for a diagnostic assessment.  


The thing that excites me the most about it is also the thing that is most terrifying – this has not been done before, people have swum all 13 back-to-back in a 72km epic swim challenge, but no one has added the other two disciplines, and I’m keen to find out whether it’s possible!  


To stay focussed I rely on routine. I wrote my training plan ready to start the first week of January and will force myself to follow it religiously until it becomes ingrained. To keep myself accountable, every time I don’t feel like doing one of my planned workouts, I remind myself that it is my choice to do this, and that some children don’t have a choice but to endure the struggles they face every day. 


What message do you hope children and families take away from your record-breaking efforts? 


The message is the same as the one that I hope my children are seeing, it’s to keep going, to remember that we can achieve things that we might feel are impossible at times, and it’s a reminder that support (whether it’s from friends, family, or even strangers) is available and can help us through the dark patches where we feel like giving up. 


You’re raising money for three charities this year - Ambitious About Autism, New Leaf Learning and SOS!SEN - all supporting children with special needs. How do you hope your 2026 challenges will amplify awareness and support for these causes? 


I am indeed and if anyone wants to find out more the details, they can be found here: https://gvwhl.com/NKPXA  


Breaking records and pushing the boundaries of human endurance as you described it earlier (I’m going to use that going forward!) gets people talking, it evokes a reaction and typically gets coverage – my aim is to use that coverage to continue to raise awareness of SEND, of the challenges people go through on a daily basis (not voluntarily) and to highlight the wonderful support services (and hopefully help raise money to assist in the provision) that are provided by the three amazing charities I am working with. 


What role can supporters of SOS!SEN play in helping you reach your fundraising goals — whether through cheering you on, sharing your story, or donating?  


Any support people can provide would be awesome! Sharing the story goes a long way in helping to spread the message and raise awareness. Donations support the charities and their ability to change lives.


Any on-the-day support is hugely appreciated and if people were interested in being independent witnesses or timekeepers (if they have any time keeping experience) for part of any of the attempts, then it will help me to fulfil the requirements of Guinness World Records. Feel free to follow me on Instagram @tonytalkstriathlon or email me at tony@tjhendurance.co.uk 


If anyone reading this is thinking about doing their first swim, bike or run based endurance challenge to raise money for SOS!SEN then please get in touch, I’m a certified triathlon coach and I’d be happy to write you a free training plan. 


If you could sum up your mission in one sentence — the spirit behind these challenges — what would it be? 


I’ve called this year’s set of challenges Endure: Together – acknowledging that there are so many people having to show resilience and mental fortitude to overcome challenges in a variety of different forms. 


Tony during a competition on his bike smiling at the camera.

Friday, December 5, 2025

A Holiday Message from SOS!SEN's CEO, Richard

 

Richard wearing a red jumper holding his dog
Happy Holidays from Richard and Shadow

Supporting families through a changing education landscape


Between October and November, our Helpline supported almost 500 people seeking advice, information and reassurance. We have focused firmly on access and responsiveness; call-answer rates have improved from 10% in October 2024 to 29% in October this year. That’s progress, though we’re not pretending its job done, there is still far more demand than capacity.

Our advice centres have been noticeably busier, with more families using face-to-face support to help them navigate increasingly complex situations. To strengthen this further, we have launched a dedicated Grounds of Appeal team. They have already been working with families to prepare clearer, stronger cases and ensure their voices are properly heard.

Alongside direct advice, we are expanding practical learning opportunities. Our programme of webinars continues to grow, covering common challenges and frequent points of confusion in the SEND process. We will be running a promotion in December to make these sessions more affordable at a time when many families are feeling the financial squeeze.

We would not be able to offer any of this without external support. Recent funding includes:
  • $10,000 corporate donation from Vitol
  • £8,000 from the Barbera Ward Foundation, supporting the launch of our first virtual advice centre for adopters, special guardians and foster carers
  • £8,000 from the Bailey Thomas Foundation and £5,735 from the Eveson Trust, both helping to secure the future of our Helpline
We now have 114 volunteers working with SOS!SEN, which is a significant milestone. Their commitment makes an enormous difference; it allows us to speak to more families, run more sessions and respond more effectively. Growth brings challenges, but it also brings momentum. We would not be able to do the work that we do and to support the number of families that we do, without the amazing volunteers we have dedicating their time.

Thank you to everyone who has contributed time, funding or expertise. There’s still a long way to go in ensuring families receive the support they deserve, but together we’re pushing forward.

For those of you who celebrate, I wish you the very best Christmas, for those who don’t, I hope you still get to enjoy some downtime and a chance to recharge.



Richard Orchard-Rowe, CEO

Friday, November 7, 2025

Dr Carrie Grant (MBE) & David Grant (MBE) Talk Neuro-spiciness and the Importance of Community

Dr Carrie Grant (MBE) and David Grant (MBE) sitting side by side and smiling into the camera.

Carrie and David Grant are BAFTA award-winning broadcasters, vocal coaches, leadership coaches and campaigners. 

Married for 36 years, David and Carrie have 4 children together - Olive, Tylan, Arlo and Nathan. Their family dynamics are shaped by the unique challenges and experiences associated with raising children who have special educational needs, including autism and ADHD. As a result, they passionately advocate for issues related to SEN and inclusion. They have openly shared their experiences navigating the complexities of raising neurodivergent children, including the emotional and practical challenges that come with it.

The team here at SOS!SEN were thrilled to work recently with David and Carrie on a video project for the charity (being launched soon!) They kindly gave up their time and were wonderful enough to do so again for this interview, so thank you sincerely to you both.

Find out more about Carrie and David's work, including their book, 'A Very Modern Family', on their website - www.carrieanddavidgrant.co.uk

How has your understanding of neurodiversity evolved over the years as parents of neurodiverse children? 

David: Our understanding of neurodiversity (all diversities including neuro-typical) and specifically neurodivergence has evolved massively over the years. Back when our children were first diagnosed there was different terminology, Aspergers, high/low functioning, gendered assessments etc. It makes you realise how far we have come and how much difference parents have made to the changes we now see.  

Carrie: Back then there was only negative stuff written about autism, so we discouraged our children from Google-searching “autism” – these days you are far more likely to find positive testimonies. Perhaps we have gone a little too far the other way with the “super-power” narrative but it evens out and I am glad there is so much more to see and read, especially from those with lived experience. 

Can you describe some of the biggest challenges you've faced navigating the SEND system within educational settings in the UK? 

Carrie: Where do we begin? Untrained school staff, educators feeling intimidated by parent knowledge. Teachers simply not knowing what to do or how to work with our children. The system is not set up for our children and so schools either fail the Government directive or fail our children and in most cases the children lose out.  

David: We’ve had children with suicidal ideation and self-harm, school avoidance, violence, permanent exclusion, no school available so children out of school, Local Authority challenges, no access to CAMHs at times, or collaboration between CAMHs and school. We have also had amazing school experiences and when those happen it restores our hope that change will eventually come.

What changes would you like to see in how SEND children and young people are supported in education? 

Carrie: Specifically, we need to prioritise different learners. I hate the idea of segregation for our children. There is an erosion of community around us, so we must intentionally press into working together, our children being together or we will create a two-tier system. This will involve great leadership, flexible leadership, compassionate leadership.  

David: What irks me is seeing the potential in our neurodivergent children being lost, children being traumatised by school and just trying to survive it rather than learning and being prepared for a life where they can dream big dreams.  

Every teacher should have full training on the needs of children. If needs aren’t met, then education is more challenging. Creating compassionate, informed practise makes a huge difference. 

Carrie: I would like our children to feel like they belong. The opposite of belonging is not “not belonging” it is “fitting in”. I want our children to show up as themselves in all their neuro-spiciness and feel like they have a loving community around them, who get them, who celebrate them and value them. 

What have you learned from other parents with children with SEND? 

Carrie: For the past fourteen years we have run a support group in our home with over 300 families. Parents hold so many keys, so gathering community is essential to pass on and to share best practise. We can cry together, laugh together and become educated and informed. 

David: We have Mums and Dads in the group but then I started a Dad’s Dinner Group because I think a lot of Dad’s are really struggling to make sense of everything that is happening to their family, perhaps in different ways to the  Mums. That group is a real lifeline too. 

What role do you think community and peer support play in raising SEND children? 

Carrie: I think it is a life-saving attribute to have. 

What have been some of the most empowering moments for yourselves and your children within the SEND system—times when as parents you have felt truly understood or supported? 

Carrie: When Tylan (24yrs) was in school, I was in constant contact, trying to get them to understand Ty’s needs – I wasn’t asking for much but it was like banging my head against a brick wall. At the age of 16yrs Tylan went to work as an actor on Hollyoaks. All members of the cast and crew were sent on 2 days autism training, which effectively means that a lighting rigger on Hollyoaks has had more autism training than any teacher Ty experienced in his whole school career. Tylan flourished and his life changed because he was seen and understood – it’s not rocket science but there has to be a willingness to learn. 

David: When Arlo had been out of school for 3 years (11-14yrs) because there was no school those years were terrible. We were eventually allocated a school and the first day everyone was wearing face masks (2020). Arlo went up to the Head of the school and said, “Am I allowed to have a nose piercing?” The teacher pulled her face mask down, revealing a nose stud and said, “Well if I’ve got one, I don’t see why you can’t have one.” I wanted to hug that teacher. Small things can make a huge difference. 

What main piece of advice would you give to parents just starting out with navigating the SEND system in schools? 

Both: Join your local Parent Carer Forum, join groups, follow the experts online to see what the latest developments are. Look at the “Local Offer” on your Local Authority website – this shows everything that’s available in your area.

Carrie and David sitting together in black tops.

Friday, October 17, 2025

Welcome to our Blog

 


The team at SOS! Special Educational Needs (SOS!SEN for short!) is thrilled to welcome you to our brand new blog. It's here that we'll share inspiring interviews, useful articles and charity news, so you can keep up with what we're up to and see that you're not alone.

If you're new to SOS!SEN, here's a little about us as a charity.

Founded in 2002 and registered as a charity since 2013, SOS!SEN is a national charity supporting parents and carers navigating the complex landscape of SEND (Special Educational Needs and Disabilities). Our mission is to provide a comprehensive range of information, advice, signposting and support to empower parents to navigate the intricate legal and bureaucratic processes inherent in securing SEN support in schools and colleges. This is done through 1:1’s, EHCP (Education, Health and Care Plan) checks, working documents, pre-action protocol letters (PAP), grounds of appeal (GOA), webinars, a free, national Helpline and several free, walk-in Advice Centres dotted around the England. The team is a small but mighty one, supported by over 100 fantastic volunteers, all with experience of SEND personally or professionally.

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.

- The Children's Commissioner has suggested that 13,100 children left state education between the spring terms of 2022 and 2023, to be taught at home. 1/3 were SEN children.

- 72% of pupils with an EHC plan in 2024 are boys, and 62% of pupils with SEN support are boys.

- 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.

In 2024 SOS!SEN supported 3400+ families looking for guidance with a child or young person with SEND being welcomed and supported in an educational setting. By the end of 2025, this is set to reach nearly 6000. The journey for many families can be long and isolating. When a school, college or nursery can’t meet the additional SEND support required on their own budget, an EHCP 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, detailed, quantified provision to meet them. The school/setting must be named. In 2023, only 50.3% EHCP’s were issued within the statutory 20-week time limit and there were 15,615 appeals registered. With a 90% success rate on our PAP (Pre-Action Protocol) Letters Project, 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.

We're here to help you secure the right SEN provision for your child. 

Investing in families. Expanding our reach. Strengthening our future.


Find out more by visiting our website - www.sossen.org.uk