Safeguarded to Silence: How people with learning disabilities are left in pain

There is a quiet cruelty embedded in parts of modern healthcare. It does not announce itself with malice or intent. It arrives through indifference, and professional certainty. It is the moment a medical professional looks at a person with a learning disability in visible distress and decides without investigation, that what they are seeing is “mental health”, “the environment”, “genetic deterioration”.  That decision can trap a person in pain for years.  In my opinion, I do not see how that does not amount to torture under the Human Rights Act.

People with learning disabilities experience pain, illness, and medical emergencies just as acutely as anyone else. What differs is how that pain presents. Communication may be limited, atypical or behavioural. Distress may look like agitation, withdrawal, sudden changes in mood, loss of skills, fear, or “challenging behaviour” as it is so often labelled. For my daughter, one of her signs of agitation is ‘happy clapping’. The clapping is not happy, it is frantic, constant, and despite myself, or carers stating, ‘this is not happy’, this is severe agitation, it is written so many times, by medical professionals that do not know her, ‘settled and clapping’. Other times, professionals will come in and say "she looks settled to me". And currently, with severe distressed chronic pain, agitated episodes, they seem to think this extreme change is her normal. Despite literally meeting her seconds earlier, they have determined immediately that she is either perfectly fine, that this is normal, or that she is just "deteriorating." Instead of treating these changes as red flags requiring urgent medical curiosity, they are too often dismissed as inevitable consequences of disability – or worse, as genetic decline. This is a systemic failure.

When medical professionals decide in advance that deterioration is “expected”, they stop looking. They stop testing. They stop listening to those who know the person best and determine they are the expert. And the person in front of them, the person they may have only met that 5 minutes ago, earlier that day, that week, thus, literally only spending very limited time with them, is left to endure, untreated pain, undiagnosed illness, and preventable harm.

The phenomenon has a name: diagnostic overshadowing. It occurs when a person’s disability is used to explain away new symptoms, instead of prompting proper investigation.  Families and carers being told they are ‘over-anxious’, or ‘over-investigating’, escalating distress being reframed as mental illness rather than physical disease.  When this happens repeatedly over months or years, it becomes something more than negligence. It becomes sustained suffering.

Article 3 of the Human Rights Act is clear, “no one shall be subjected to torture or to inhuman or degrading treatment or punishment”. This right is absolute. There is no justification for breaching it – not lack of resources, not clinical opinion, not professional convenience.  The threshold can be met when the suffering is serious and prolonged, authorities knew, or ought to have known, about the risk, they failed to take reasonable steps to prevent it.

When medical professionals are repeatedly alerted to distress, pain, regression, or sudden changes – and choose to attribute it to ‘genetic deterioration’ the threshold, I think, is crossed. More so, when the person cannot advocate for themselves and when those who advocate for them are ignored.

Inevitable deterioration?

The idea that deterioration is “inevitable” for people with learning disabilities is not science – its bias. By relying on “it being inevitable” instead of concreate knowledge, it allows systems to avoid complex diagnostics, dismiss family expertise, reduce disabled lives to prognoses rather than individuals, normalise suffering that would never be accepted in non-disabled patients. If a non-disabled adult suddenly stopped walking, lost speech, lost balance, developed episodes of extreme distress, or showed signs of neurological collapse, no medical professional would say, “this is just who you are now”.

Yet, for people with learning disabilities, this logic is routinely applied – and defended. This is discrimination. And when it results in prolonged pain and untreated illness, then surely it becomes inhumane treatment.

Silence part of the harm?

Safeguarding frameworks often fail to recognise medical neglect when the neglect is dressed up as “professional opinion”. Complaints are deflected. Families are pathologised. And the person at the centre – the disabled individual in pain is rendered invisible. This silence allows the same harm to happen again and again, across services, across regions, across lives.

Under the Human Rights Act, the state has a positive duty to protect individuals from inhuman and degrading treatment. That includes people with learning disabilities in NHS care. It requires active listening to carers and those who know the person best. Proper investigation of new or worsening symptoms. Refusal to accept “deterioration” as a diagnosis. Equal standards of clinical curiosity and care. Anything less is not just poor medicine. It is a breach of fundamental human rights.

Deflection onto the unpaid carer/parent

A damaging pattern can also emerge when medical professionals, unable or unwilling to explain a person’s deterioration, turn their scrutiny away from the patient and towards the parent or carer instead. Rather than investigating pain, regression, or medical instability, professionals initiate safeguarding concerns about the parent/carer. Advocacy is reframed as “over-involvement”, persistence is labelled as “anxiety”, “difficult to work with”, “challenging parents”, “fixated”, requests for investigation become “pressure”.  And, if this happens, safeguarding processes grind slowly forward, medical investigation quietly stalls.

This can be catastrophic for the person with learning disabilities and their parent/carer. The very act of raising concerns, by the only person that is “their voice” becomes grounds for suspicion. Meanwhile pain continues, illness progresses, and opportunities for diagnosis are lost. Safeguarding is meant to protect vulnerable people from harm. When it is misused to deflect from medical uncertainty or professional discomfort, it becomes a mechanism of harm itself.

Double standards?

Safeguarding seems to have been built to monitor families, not institutions. When harm happens in a medical setting, the system instinctively looks for risk outside itself, even when the evidence of harm sits squarely within professional practice. Safeguarding language simply isn’t applied to professional systems in the same way it is to parents. If a parent failed to recognise pneumonia, ignored swallowing risks, repeatedly gave unsafe medication, left someone in pain, refused medication, the parent/carer would be safeguarded immediately. When the professionals do these things, the system switches language, harm becomes “complications”, neglect becomes “oversight”, pain becomes “behaviour”, protocol breaches become “differences of opinion” or, as I was recently told, “she has so much information, important protocols were lost within it”.

Safeguarding the parent becomes a way to stop listening to symptoms. Medical investigation slows or stops. Notes become defensive. Professionals’ close ranks. The focus shifts from “what is happening this person?” to “why is the parent making this hard?” Meanwhile, the person with learning disabilities, remains un-investigated, untreated, in pain unable to speak out, unable to protect their parent/carer, unable to support or confirm what they are saying, watches on, as the system destroys their parent/carer.

Safeguarding frameworks are poor at recognising medical neglect by professionals, do not treat diagnostic failure as abuse, rarely review prolonged untreated pain as harm. Therefore, even when there is repeated evidence of harm, escalating severity, the system does not name it as abuse. Yes under human rights law, that’s exactly what it can be.

The uncomfortable truth is that safeguarding is far less used to confront institutional harm to disabled people. That’s why the parent/carer is scrutinised and the system isn’t. Why the delays are tolerated. Why suffering is normalised. Why the same failures happen again and again. The system appears to be built to question parent/carers before it questions itself. And those with disabilities pay the price.

Learning disabled pain less urgent?

The suffering of people with learning disabilities is not less real, less urgent, or less deserving of medical attention. When the healthcare system chooses not to understand their presentation and uses mental health, environment or genetics as an excuse to stop looking, it condemns them to endure pain without relief, fear without explanation and illness without treatment, that is not care, under the law, it may be torture.