We are a group of parents, carers, teachers and health professionals that care for disabled children in South West London. Our children have complex health and learning needs and rely on NHS Continuing Care funding to live safely and thrive.   There have been an alarming number of children who have been told that they either no longer meet the ICB criteria, or their support has been cut without any change in need.  We consider that recent decisions by our local Integrated Care Board (ICB) have unlawfully slashed vital care hours, leaving many vulnerable children at risk, and that this is based on policy decisions, not a change in need of the children.  

This issue primarily affects disabled children within South West London, but our action here may help ensure that all disabled children and their families are better protected in the future from such cruel and short-sighted action by ICBs.

Summary

This action is about defending the rights of the most vulnerable members of our society: disabled children.  They rely on dedicated professionals, carers, friends, and family just to live as normal a life as possible. They cannot defend themselves when decisions are made for financial or political reasons.

We believe that the widespread cuts we are witnessing are based upon policy reasons, just to save costs, rather than any change in the need of the children concerned.

Sadly, the recent cuts to Continuing Care funding by the South West London Integrated Care Board (SWL ICB) are not unique.  They reflect a disturbing pattern across the country where cost-saving is unlawfully prioritized over children's needs.  It's statistically improbable that so many children with complex needs would simultaneously require less care.  We believe these decisions are driven by policy, not clinical need.

That's why we – parents, carers, teachers, and health professionals – are uniting to fight back. We are raising a ‘fighting fund’ in order for an investigative review with a specialist law firm into what is happening at this ICB. This is the crucial first step before, we hope, launching a judicial review to hold the SWL ICB accountable and set a precedent to protect other vulnerable children across the country.

Call to Action

It’s heartbreaking to have to fight the ICB for the care our children need. Yet here we are, once again forced to challenge a system that is failing those who need protection the most.

We need to raise a fighting fund for the legal investigation that could stop these cuts and ensure that no child is left without the care they need to survive.

Please, please do give anything that you can —every pound matters. Share our story to help us fight for justice. 

What are we trying to achieve?

This is about more than just care hours; it's about upholding the legal rights of children who can't fight for themselves. We believe that these cuts aren't just illegal; they're cruel and shortsighted. Reducing care now will only lead to more suffering and, ironically, higher costs for the NHS down the line as these children end up in hospitals needing acute and intensive care.   We have seen this pattern before.  It is harrowing for us and our children and we know that, if we do not fight now, we and many families like ours will continue to suffer in this way.

Our goals are:

• Reverse these unlawful cuts and restore care based on actual needs, not budget targets.

• Hold SWL ICB accountable if, as we consider, they are acting unlawfully.

• Set a precedent so other ICBs think twice before making similar cuts to disabled children's care.

Why this matters

We don't want to be at odds with the NHS. We have so much respect for the doctors, nurses, and support staff who work tirelessly to keep our children healthy and safe. But we consider that the administrators making these decisions are abusing their power. They hide behind red tape and use legal threats to bully parents into accepting less than their children desperately need.

The only way to change this is for parents to stand together and fight. And that's exactly what we're doing – not just for our own children, but for every disabled child who might face this injustice in the future.

What is the next step in the case?

Our first step is to fund a legal review that will gather evidence from families, document procedural failures, and lay the groundwork for a judicial review of the ICB’s unlawful actions. We will select two or three lead claimant families to represent the group and coordinate the legal challenge.

How much are we raising and why?

We are aiming to raise £5,000 to £10,000 to cover:

• Legal investigation costs.

• Expert advice and evidence-gathering.

• Coordination efforts among families and professionals.

Every single penny will help us fight this unfair system and ensure these children receive the care they are legally entitled to.

Thank you from the bottom of our hearts for standing with us. Whether you donate, share our story, or simply spread the word, your support will help ensure that no child loses essential care because of these unlawful cuts. Together, we can make a real difference.