Merseyside Send Support Network

17/01/2026

I hope I don’t upset anyone with this, but last night I got thinking - oh dear!

I went down a dark rabbit hole, could this be what’s happening?
Or have I fully lost the plot, trying to find a reason why?!

If You Don’t Name Us 👇

They say it’s about budgets, About backlogs.
About difficult decisions in difficult times.

They say the NHS is under pressure,
local authorities are stretched, schools must be resilient.

They say it with consultations and clipboards,
with policy papers and calm voices,
with smiles that soften the blow of doing nothing.

But what if this isn’t about money?

What if it’s fear.
Fear of minds that don’t bend neatly.
Fear of children who won’t comply politely
with Ofsted frameworks and attainment charts.

Fear of people who ask why instead of how high.

So you stop diagnosing,
You raise thresholds.
You stretch waiting lists
until children grow up
before they’re ever named.

Because if you don’t name us, you don’t have to accommodate us.
If you don’t recognise us,
you don’t have to change.

You rename need as distress.
You call support dependency.
You dress suffering up as resilience
and hope no one notices the cost.

You tell parents to wait.
Two years.
Three.
Five.

You tell schools to manage without funding,
without training,
without specialist support and then you blame them when children disappear from the register.

You say elective home education is rising,
like it’s a trend,
not a last act of protection.

You say attendance must improve,
but you won’t ask why children are breaking
under fluorescent lights,
crowded corridors,
and untrained restraint.

You say reasonable adjustments
but never define reasonable
as human.

Because once a child is diagnosed,
the law speaks.
The Equality Act applies.
EHCPs become more reachable.
The system becomes accountable, or should anyway!

And accountability
is expensive.

Neurodivergent people aren’t broken.
We’re disruptive.

Not because we’re loud,
but because we see.

We see when rules don’t make sense.
We feel when environments are hostile.
We resist quietly, loudly, awkwardly, honestly.

And that kind of truth
is dangerous
to a system built on conformity.

So no, this isn’t a cull
with force or violence.

It’s quieter than that.

It’s language removed.
Pathways closed.
Doors shut politely
and labelled streamlined.

It’s making support so hard to reach
that only the strongest survive it,
and then saying,
“See? They’re coping.”

It’s delaying identity
until people forget they were ever allowed to ask who they are.

Because an undiagnosed person doesn’t have rights, just behaviour.
Just failure.
Just non-compliance.

And when we burn out,
when we fall out of education,
out of work,
out of public life, you don’t call it exclusion.

You call it unfortunate.
You call it complex, You call it not meeting threshold.

But make no mistake.

This isn’t about us being too many.

It’s about us being too honest.
Too uncontainable.
Too unwilling to pretend
that harm is normal
just because it’s common.

We don’t need fixing, We need room.

And if naming us means rebuilding the system
changing schools,
rethinking work,
listening to children…

then that is the diagnosis
they refuse to accept.

Because once we are named,
once we are supported,
once we are allowed to exist out loud,
the system has to change.

And that fear?
That fear says everything.

Just a thought anyway.
All my Love as always.

Michaela
Spilling the Tea on Autism and ADHD

16/01/2026

We can never agree with what happened. A child should never lose their life.
But we do understand the desperation behind it — and that understanding is exactly why we fight so hard.

Every single day at MSSN we hear from parents who feel isolated, exhausted, and failed at every turn. Parents caring for children with complex needs who are begging for help, waiting months or years, being passed between services, told to “cope”, told to “wait”, told they’re not enough — until they are completely empty.

Many of us have been there. Some of us are still there.

This tragedy didn’t happen in a vacuum. It happened in a system where parent carers are pushed to breaking point, where loneliness is normalised, respite is rare, and mental health support comes too late — if at all.

Understanding this does not mean excusing it.
It means refusing to look away.

This is why we fight.
This is why we shout when no one listens.
This is why we stand beside parents who feel invisible.

No parent should ever feel that the only way to protect their child is to disappear with them.
And no family should be left feeling so alone that hope runs out.

If you’re reading this and feel like you’re drowning — you are not weak, and you are not alone. Reach out. To us. To someone. Please.

We will keep fighting — for better support, earlier intervention, real respite, and a system that values disabled children and the parents who care for them.

Heartbreaking words of an 'isolated and lonely' mum who killed daughter before taking own life

16/01/2026

What do we think, should we join ??

14/01/2026

We love this so much Goodysphere

14/01/2026

💤 SEND Parents Check-In 💤

If you’re extra tired right now… you’re not lazy.
You’re not failing.
You’re just a SEND parent.

Looking after children with additional needs isn’t for the weak 💪
It’s late nights, early mornings, constant advocacy, sensory overload (theirs and ours), appointments, meetings, meltdowns, paperwork, and still somehow showing up with love every single day.

We run on caffeine, dark humour, and pure determination ☕😅
And some days? Just surviving is the win.

So if today all you managed was keeping everyone safe and fed — that’s enough.
If you’re exhausted, overwhelmed, or running on fumes — you’re not alone.

Be kind to yourself.
You’re doing one of the hardest jobs there is.
And you’re smashing it, even when it doesn’t feel like it 💙

14/01/2026

Many families are not aware that there are two different social care assessments, each with a distinct purpose.

A Needs Assessment considers whether a disabled child and their family require additional support from the local authority, and what services may be provided to meet those needs.

A Carer’s Assessment focuses on the parent carer and must consider physical, emotional and mental health, wellbeing, employment, housing, relationships and other factors that affect their ability to care.

These assessments are separate. You can request either or both, and one does not replace the other.

Eligible children and carers should receive a written plan setting out support, outcomes and review arrangements.

More information about social care assessments and legal rights is available at: https://f.mtr.cool/oozzpziera

14/01/2026

The government has published long overdue draft statutory guidance for the Down Syndrome Act 2022, along with a public consultation inviting responses before 30 March 2026.

14/01/2026

With more heavy snow expected today across the UK, many of us will be relying on central heating more than usual to get through the colder days.

14/01/2026

Today we are announcing 𝗔𝗺𝗲𝗻𝗱𝗺𝗲𝗻𝘁 𝟵𝟬 𝘁𝗼 𝘁𝗵𝗲 𝗖𝗵𝗶𝗹𝗱𝗿𝗲𝗻’𝘀 𝗪𝗲𝗹𝗹𝗯𝗲𝗶𝗻𝗴 & 𝗦𝗰𝗵𝗼𝗼𝗹𝘀 𝗕𝗶𝗹𝗹 in the House of Lords, tabled by Baroness Tanni Grey- Thompson. For too long, parents of critically ill children have endured everything life can throw at them. But it isn’t only their child’s illness that breaks families. It’s being forced to fight a system that does not work for them.

Today, under the Parents Deserve Better campaign, 𝗪𝗲 𝗮𝗿𝗲 𝗿𝗲𝗹𝗮𝘂𝗻𝗰𝗵𝗶𝗻𝗴 𝗛𝘂𝗴𝗵’𝘀 𝗥𝗲𝗽𝗼𝗿𝘁. This work began under the previous Government but was halted when the election was called leaving families in limbo once again.

We are now asking for three key areas to be formally investigated, reported on, and debated in both Houses of Parliament at no cost to the taxpayer to fix where the safety net is broken:

• A structured, proactive mental-health pathway for the whole family when a child is diagnosed: including GPs and community teams, not just hospitals.
• A systematic review of the “forgotten children”, siblings who suffer in silence while parents are forced away to care for a critically ill child.
• A full examination of the financial impact on parents, who are pushed to the brink while trying to hold their families together.

There is a devastating cliff edge in care once a child is no longer a newborn.
Support falls away. Families are left alone. The net is broken and it needs fixing.

🗓 Amendment 90 will be heard on Monday 19th January 2026
📅 Exactly two years to the day since we launched our Private Member’s Bill with Sir Oliver Heald.

This is not about politics. It is about parents. And it is long overdue.

Support our campaign for better www.parentsdeservebetter.com

14/01/2026

“Oh you can get DLA if your child is ill.”
“Just apply for a Blue Badge that’ll help.”

If it really worked like that, parents wouldn’t be drowning. This is what actually happens👇

First, you’re told to wait 90 days. No support. No backdating. Just get through it somehow.

Then you’re given a 42-page form to complete while your child is seriously ill. It asks questions like:
“How long does it take to wash your child’s hair?”

None.
Because they’re on chemo.
Because they’re vomiting.
Because they’re connected to lines, pumps and drugs.

You submit the form. You wait 2 weeks for a text message.
Not a decision a TEXT!!

That text tells you there’s a 25-week wait before anyone even looks at it.

If they don’t reject it.
If they don’t question it.
If they don’t ask you to relive it all again.

So let’s be clear:

🛑 3 months before you’re allowed to apply
📄 42 pages of humiliation
📱 2 weeks to be acknowledged
⏰ 25 weeks to be processed

That’s over 9 months.

For parents who have already lost their jobs.
Their income.
Their sleep.
Their sense of safety.

This isn’t support.
It’s a barrier designed to break you.

And people wonder why parents collapse.

Parents deserve better. This system is why Hugh’s Law is needed 🧡