PDAsupportlancs

23/10/2026

Excited to be part of the create centre Halloween event.

One of our young adults will showcasing her love of tarantulas. Having an internalised profile of PDA has been really debilitating and has meant the traditional way of education was not accessible. Her profile of autism was not understood and it took a hard fight at tribunal to get the correct provision put in place. Even with a robust EHCP, this was not followed and much needed provision ignored.

Having recovered burnout, gaining GCSE's through an EOTAS package has proved that when the provision is right our young people can thrive.

A frustrating and prolonged period of where her EHCP was not followed at college, placement broke down. Despite getting a merit in her first year, this was at great expense to her mental health and wellbeing and resulted in further burnout.

Through her passion of spiders, she has managed to connect with society in a way that has previously been really challenging. She now wants to help others who have struggled in school and raise awareness of mental health issues that many with her profile experience.

Good luck Ava, we are so in awe of you!

The CREATE Centre – Creativity, Arts, Training and Education https://share.google/2KuftVxNdNCZWa74R

22/10/2026

Fingers crossed we get to see a showing in the Northwest soon! So many in our group have been effected by this. Would love an opportunity to be involved with a showing🤞🙏

06/10/2026

Still smiling at these 💛

A few days ago I spoke at the 7th global PDA Summit organised by Nicola Reekie at the The PDA Space. I spoke about our family's journey and how our parents' group came to be. It was an honour and a privilege to be amongst such incredible speakers. I was worried I wouldn't get any feedback and would be left wondering what people thought, so to receive such lovely comments means the world.

"I have never before heard someone talk so closely to our experience and to my feelings as I went on this journey… I especially resonate with the PDA 'lightbulb' moment and the finding of strength and connection in community."

"The journey with your child has so many parallels with my own journey. The work you are doing is amazing."

"For parents, it is a 'how to' run a parent's group (even if your group only consists of your own family...) For local authorities, if you can encourage someone in your area to run a group like this, it WILL help you."

And my favourite:
"We need a Paula in Manchester!!" 😄

That's the bit that matters most to me. None of us should be doing this alone. If you're thinking about starting something where you are, even just a coffee with one other parent, message me. I'm happy to share everything we've learned.
Thank you to everyone who came, listened and took the time to write. 💛

If you missed the webinars there is still chance to purchase the back pocket pass and get access for a year

02/10/2026

This weekend’s PDA summit theme is about CAPACITY and our very own Paula is one of the speakers! This space is one of the only places where professional and lived experience unite for PDA people- validation, compassion, understanding and expertise.

We have come a long way in the recognition of this profile. It is vital that understanding from untrained professionals and wider society is connected, because PDA is unique and requires a different approach to support.

Sign up and join now!

22/09/2026

Happy to share that I'll be speaking at The PDA Space Summit 2026! Make sure to attend it on October 1.

Login to LinkedIn to keep in touch with people you know, share ideas, and build your career.

01/09/2026

’Twas the Night Before School

‘Twas the night before school, and the house was a blur,
Uniforms waiting, new shoes, quite the stir.

Some children were groaning, some wide-eyed with glee,
Some counting the hours till their best friends they’d see.

Some packed their new bags for a first ever classroom day,
While others were starting in quite a new way.

Some heading to secondary with timetables tight,
Some excited that college was now in their sight.

Some carefully practising just taking a seat, Where entering the doorway feels bravely complete.

For school reintegration’s no race, let us say;
A hello. One room. That’s enough for today.

And elsewhere that evening, the paperwork lay,
EHCP battles filling the day.
A child would return to a placement that’s worn,
To a system that’s broken,
to parents forlorn.

Some children won’t go;
not stubborn, not bad.
Their trauma speaks louder than words;
They are sad.
Their bodies remember what language won’t tell,
That school wasn’t “safe”,
Their mind wasn’t well.

Some wait for EOTAS,
for tutors, for a plan,
For someone to finally say, “Yes. We understand.”
Some brilliant packages ready to roll: Learning what fits round the heart of the soul.

Some waiting for specialist schools with a space,
For gentler provision, a slower-paced place.

And some still are waiting. Still fighting. Still there.
Refreshing inboxes. Repeating a prayer.

Yet tonight, across the country, there’s hope mixed with fear,
As families prepare for what’s coming this year.

There are cheers and there’s grief, and there’s courage unseen.
Mainstreaming, SEND, EOTAS and everything in between.

So tomorrow, whatever the pathway may be,
A classroom or home or a tree-based marquee.
May each child be met where they genuinely stand,
Not dragged toward milestones that shouldn’t have been planned.

Your pathway is worthy.
Your pace is just right.
There is more than one way to learn, grow, and take flight.

Here’s to tomorrow,however it came.
Happy new school year, whatever your name.

28/08/2026

https://www.facebook.com/share/p/19StRh8ET1/

📌 SAVE THE DATE:

The PDA Space Summit is Back for 2026!

Join us for the 7th Annual PDA Space Summit,

The world’s largest ((FREE)) online event dedicated to
Pathological Demand Avoidance.

📅 When: Thursday, October 1 – Tuesday, October 6, 2026

🛜 Where: Online (Watch from anywhere)

📣Theme: Capacity and Capability

THIS YEAR, we are diving deep into a critical conversation:

Why can someone be capable of doing something, but not always have the capacity to access that ability?

24+ speakers will help us learn to support PDA people in more respectful, responsive, and neuro-affirming ways.

Whether you are a PDAer, parent, carer, educator, or professional, this summit is designed to help you find approaches that work with the person, rather than against them.
Your Free Ticket Includes:

📣 Access to every summit session.

🕧• Flexible Viewing: New webinars drop daily at 10 AM UK time.

⏳48-Hour Window:

Each day’s sessions are available to watch for 48 hours, you don’t need to be online at a specific moment.

📌
No pressure to watch everything, just what works for your capacity.
All you have to do is ask me for the link to sign up.

👇
And SHARE this post with anyone who would benefit from being part of this.

ARE You coming to the 7th summit ?

02/07/2026

📌 A little update from our collaborative work with LPCF

Earlier this week, Karen attended LCC’s EHCP Quality Assurance Forum on behalf of LPCF.

After signing the relevant GDPR/confidentiality agreement, she took part in a live EHCP quality assurance audit exercise, focusing particularly on Sections E and F. She reviewed a live case alongside senior SEND colleagues and contributed to a thoughtful roundtable discussion about EHCP quality, SEND improvement and how plans are currently audited.

No identifying details can be shared, but the wider learning matters.

🔍 Key concerns identified

The plan she was reviewing appeared to have passed the electronic audit process, but closer review raised concerns about the evidence behind the plan.

In particular, the Educational Psychology advice appeared to be a graduated-response report, rather than statutory advice obtained specifically for the EHC needs assessment. It was also older evidence and had been used to inform post-16 provision.

Karen fed back that this really matters. If advice is outdated, vague, non-statutory or not specific enough, then the provision written into Section F may not properly reflect the young person’s current needs.

🧩 Assessment gaps

There were also concerns about missing specialist advice. The young person had autism and a hearing impairment, but there was no Occupational Therapy advice or sensory assessment evident, despite clear indicators around:

• sensory needs
• daily living skills
• independence
• preparation for adulthood
• access to the learning environment

For many autistic young people, including those with PDA profiles and sensory differences, these are not “extra” issues. They are often central to whether education is accessible at all.

⏰ Timeliness and transition

The timeline also raised concern. The young person was due to move into post-16 provision, but the EHCP was not finalised in time for effective transition planning.

This meant that key post-16 safeguards could not operate as they should. This was especially concerning because the young person was also looked after, meaning education, care planning and transition planning needed to be especially joined up.

💬 Parent-carer feedback

Following the forum, Karen wrote to senior SEND managers to thank them for the opportunity to attend and to constructively set out the concerns identified.

The main feedback was that EHCP quality assurance needs to look beyond whether the final document appears well-written.

It also needs to ask:

• Is the advice statutory, current and relevant?
• Has the right specialist advice been gathered?
• Are missing reports, such as OT or sensory advice, being flagged?
• Are long delays triggering a review of the evidence base?
• Are missed statutory timescales and phase-transfer risks being identified?
• Is extra scrutiny applied where a child or young person is looked after?

🌱 Summary

A plan is only as good as the assessment behind it.

If needs are not properly understood, the right provision will not be written in. And when the right provision is not written in, families are too often left carrying the burden of delay, challenge, private reports and tribunal.

Karen has asked for these concerns to be fed into the wider EHCP quality assurance and SEND improvement process.

Better evidence leads to better plans — and better outcomes for children and young people. 💛

05/06/2026

A little resource worth knowing about for PDA families 🎮🥚

Roblox often gets a bad rap - and yes, online safety and boundaries hugely matter.

But for many PDA children and young people, gaming offers connection, autonomy, shared language and low-pressure interaction.

I’ve just come across Mindful Egg on Roblox, and it feels very worth sharing.

It’s a gentle pet-simulation game where small acts of self-care, journaling, stretching and breathing exercises, help your virtual pet thrive.

For PDA children, that matters.

Direct prompts to “calm down” or “use a strategy” can feel impossible in the moment.

But when regulation is offered through play, choice, curiosity and caring for a pet, it may land very differently.

It isn’t about “fixing” a child through a game.

It’s about tiny, low-demand routes into emotional awareness, self-care and co-regulation- in a space many young people already understand.

🥚 Mindful Egg on Roblox:
https://www.roblox.com/games/92340071719899/Mindful-Egg

Sometimes the best resources don’t look like resources.

Sometimes they looks like gaming.

#

Welcome to Mindful Egg, a quiet space designed for you to slow down and reconnect with yourself. In this gentle world, your egg grows alongside your habits. Small acts of care such as journaling, breathing, stretching, and resting help it thrive, while imbalance causes it to fade. There is no rush a...

23/05/2026

Inspired by a conversation with my husband this morning:

“Are you excited for panels?”

“Local Authority panels? Definitely not.
Our new solar panels? Definitely yes.” ☀️

One creates energy.

The other drains it.

For many SEND families, LA panels are one of the most opaque parts of the system. 🧩

Families often do not know:

Who is on the panel?
What roles do they hold?
What training have they had?
What criteria do they use?
How are decisions actually made?

Yet these decisions can shape a child’s education, support, placement, safety and future.

Too often, they are made by people who have never met the child.

As SEND parents, we pour so much energy into the process. ⚡

Evidence.
Reports.
Emails.
Meetings.
Waiting.
Hoping.
Praying.

But too often, that energy is not converted into accessible education or meaningful support.

It becomes:

Delay.
Disappointment.
Appeal.
Complaint.
Crisis.
Trauma.

Solar panels absorb light and turn it into usable energy. ☀️➡️⚡

LA panels could do the same.

They could take evidence, professional advice, parental knowledge and lived reality, and convert it into timely, appropriate support.

They could create capacity instead of crisis.

They could reduce future costs by meeting need earlier.

But when panels are opaque, subjective or poorly explained, the cost does not disappear.

It is simply shifted downstream. ⬇️

Onto children.
Onto families.
Onto schools.
Onto health services.
Onto tribunals.
Onto already stretched systems.

Good panels should not drain families of the energy they have left.

They should turn input into action.

Because when systems process information properly, they do not just make decisions.

They generate sustainable futures