Trigger Warning: #Safeguarding, #NHS failures, #disability
After posting about the tragic death of Valerie Kneale, many parents and professionals have asked a vital question:
“What safeguarding exists for people who cannot speak, cannot report, and cannot tell when something has gone wrong?”
We have one national training programme that truly shines — the Oliver McGowan Mandatory Training, created through the extraordinary work of #PaulaMcGowan OBE, after the preventable death of her son, Oliver.
I want to say this clearly:
Oliver McGowan Training is one of the most important disability rights advances of the last decade.
It has transformed understanding around:
- autism
- learning disabilities
- diagnostic overshadowing
- communication differences
- listening to families
- reasonable adjustments
- understanding distress
- clinical decision-making
- capacity and consent
The training saves lives and has already changed countless clinical decisions for the better.
But the recent case of Valerie Kneale has forced many of us to look at the wider picture and ask:
What about safeguarding for people who cannot communicate at all?
Children and adults with PMLD, severe autism, complex needs, or profound communication differences face risks that go beyond what clinical training alone can address:
- They cannot report abuse
- They cannot describe pain
- They may accept distress as “normal”
- Their behaviour can be misunderstood
- They rely on intimate care
- They often encounter exhausted or temporary staff
- They may be dismissed as “challenging”
- Their symptoms are easily overshadowed
- Families are often excluded from staying with them
Oliver’s Training covers awareness, attitudes, listening, and clinical safety — and it does so brilliantly.
But what it does not yet cover is:
- mandatory two-staff presence for intimate care
- CCTV in communal/high-risk areas
- legal protections for whistleblowers
- mandatory reporting of injuries
- independent safeguarding audits
- anti-tailgating and security protocols
- redefining “reasonable adjustments” to include family staying overnight
- specialist protocols for non-verbal distress
- safeguarding frameworks specific to profound disability
These are structural protections, not clinical ones.
And this is where the system still leaves the most vulnerable behind.
So this post is not a criticism of Oliver’s Training — far from it.
It is because of Oliver’s Training that I believe we now have a foundation strong enough to build the next essential layer:
⭐ The Oliver McGowan Safeguarding Addendum
A national framework to protect people who cannot communicate when something is wrong.
I say this with gratitude, not critique.
Because Oliver’s legacy has already changed the landscape of care.
And it may now be the foundation for protecting thousands more who cannot speak for themselves.
I welcome thoughts from parents, carers, SEND specialists, nurses, therapists, social workers, patient advocates, and people with lived experience.
This is not an easy conversation — but it is a necessary one.
#safeguarding non-verbal patients
#PMLD safeguarding
#NHS patient safety
#autism and learning disability training
