Lived Experience of Pica: A Parent and Sister's Perspective

Pica is not a behaviour we can switch off. It’s not a phase and it is not just sensory, it is a constant life-threatening reality that follows us into every room, every outing, and every moment of the day. As a mother, I do not relax. I do not sit down and assume my child is safe, because everyday objects, things most families never think about, can become life-threatening within seconds. Things like soil, Blu Tack, coins, cleaning products, magnets, puddles, plants, ice and anything else that’s within reach. Our home is not a normal home, it is a controlled environment. Things are locked away, toys are restricted, rooms are locked and checked constantly, and freedom is replaced with supervision. This is not how families imagine raising their children, but it is the only way to keep them alive.

We have explained the same condition over and over to professionals who have never heard of severe pica. And too often we are just handed a ‘fact sheet’. There is no pathway, no specialist, no plan, we are just told to “manage it at home”. But we are already managing it every minute of every day. What families like mine need is not sympathy. We need understanding, we need professionals who listen and we need a clear medical pathway. We also need practical support and not just information, because pica is not rare to the families living with it, it is our everyday life. When services don’t understand it, families don’t just feel unsupported, they feel invisible.

Pica is often described clinically as the ingestion of non-food items. That definition does not come close to capturing the reality of living with it. For our family, pica is not a behaviour we can manage. It is a constant, life-threatening risk that shapes our every moment of everyday life. Erin’s pica is severe and persistent. She does not distinguish between what is safe and what is dangerous including stones, soil, plastic, foam, paper, wood, fabric, paint, faeces and hair. All small objects are potential hazards and outdoor spaces, which should be places of freedom and joy, are environments of extreme risk. Erin cannot be left unsupervised, not even for a second. We cannot rely on verbal instruction, reasoning, or redirection alone and by the time something is seen, it may already be in her mouth. Every outing requires scanning the ground, the walls, furniture, and other people’s belongings. There’s no mental rest. The fear is not abstract. There’s ongoing anxiety about bowel obstruction, intestinal perforation, toxic ingestion or emergency hospital admission. Symptoms such as abdominal pain, constipation, or changes in behaviour are never just minor, they are potential red flags. What makes this ever more concerning is when you are dealing with a child or adult like Erin and David who are unable to communicate and have extremely impaired understanding and capacity. This creates a constant background of hypervigilance that is exhausting and isolating.

Pica strips away all normal parenting assumptions. Simple things like playing outside, visiting a park or being in the garden become risk assessments. Social settings are stressful because other people don’t understand the speed or seriousness of the danger. There is guilt for restricting freedom, for constantly saying no or for having to physically intervene. There is the fear of missing something, of what might happen next and of what adulthood will look like. Then  there is grief for the ease and safety other families take for granted.

David’s experience of pica was different but no less impactful. As a sibling, I grew up in an environment where attention was often crisis-led, vigilance was normalised and risk was always present. Living alongside pica affects siblings in quiet ways. Increased anxiety, hyper-awareness of danger and a sense of responsibility beyond my years. Pica does not only affect the individual, it shapes the emotional climate of the whole family. It is about parents and siblings doing everything possible to keep someone safe in a world full of hazards, often without understanding, resources or support. Pica is not just about ingestion, it is about fear, vigilance, restriction, exhaustion and love.

Magnet Ingestion

David had a medical emergency at the age of 17 when he ingested 32 magnets. Following an x-ray examination at A & E, there was debate amongst 3 clinicians to determine the best treatment pathway- operate or wait for magnets to pass. The invasive nature of such an operation needed to be carefully risk assessed as David would not tolerate medical intervention nor would he be compliant with post-surgery aftercare which placed him at even greater risk of further health complications.

The phrase “we will wait for the magnets to pass” sounds clinically calm. For families like ours, it was anything but. Each day involved the ongoing fear of bowel perforation or obstruction, repeated imaging and monitoring, constant vigilance for subtle changes and living with the knowledge that surgery could become necessary at any moment. The risk did not feel reduced with time, it felt prolonged. Multiple magnets represent a medical emergency, yet awareness of this risk was inconsistent across health, education, and emergency pathways.

Our experience highlights why earlier recognition, clearer escalation, and stronger professional awareness are critical. This medical emergency was not immediately obvious. There was no dramatic choking episode. This reflects a key issue with pica-related ingestion. It is often silent. It may be discovered late, and symptoms can be non-specific at first. By the time ingestion is suspected, harm may already be incurred internally. Multiple magnets do not behave like single foreign objects inside the gastrointestinal tract. Magnets can attract across bowel walls, trap tissues between them, cause pressure, lead to perforation, create fistulas, cause bowel obstruction, sepsis, or even death. These injuries can develop rapidly, sometimes before severe symptoms appear. This is not widely understood outside specialist paediatric or surgical teams.

From a family perspective, the medical pathway felt uncertain and reactive rather than clearly defined. Key challenges included delays in recognising the severity of multiple magnet ingestion, initial underestimation of risk due to the lack of acute distress, reliance on symptoms rather than known ingestion risk, and anxiety caused by waiting for decisions while knowing the potential consequences. For families, like ours this was terrifying. I feel the framework needs to include a treatment and clinical pathway specifically for ingestion of magnets as a high medical risk.

What this revealed about professional awareness

This experience showed us that:

• Pica-related ingestion is not always treated as high-risk by default.
• Magnet ingestion is sometimes viewed through the same lens as coins, metal or other small objects.
• Families’ concerns may not be fully weighted against clinical presentation.
• Pathways are not always clear, consistent, or communicated.

This places children and young people at avoidable risk.

The ongoing impact on families

After an incident like this:

• Every abdominal symptom becomes a red flag.
• Families live with long-term anxiety about internal damage.
• Hypervigilance increases.

For families already managing severe pica, this compounds exhaustion and trauma.

What professionals need to know

Key learning points from lived experience:

1. Professionals need clear awareness that multiple magnet ingestion is a medical emergency, even in the absence of symptoms.
2. If the ingestion is suspected rather than confirmed, ingestion may be ongoing, the quantity may be unknown and the timing may be unclear.
3. Parental concern is clinical information and should be treated as such.

This event left our family in a state of sustained anxiety, with no sense of control or certainty, repeated cycles of hope and fear, and emotional exhaustion rather than relief. For families, it is not possible to switch off when the potential consequences include sepsis, bowel injury, or death. For a child with additional needs, a prolonged hospital stay brought disruption to routine and regulation, increased distress and confusion, sensory overload and difficulty understanding why they were being confined and monitored.

Hospital environments are not neutral spaces for neurodivergent children. They can amplify distress and risk, impacting siblings and family life. During the admission, our normal family life completely stopped. David thankfully successfully passed all 32 magnets with 2 admissions to hospital, repeated imaging, and medication to assist- I use our real life example to raise awareness and create a space for shared learning purposes only.

For many people with pica and sensory processing differences, the drive is to ingest. It is not about hunger or flavour; it is about sensory feedback and regulation. Swallowing certain objects can give intense oral and internal sensory feedback. David did not swallow magnets because he wanted to be harmed. Erin does not seek items or objects just because she doesn’t understand rules. Their nervous systems are seeking regulation and doing so in unsafe ways because safe alternatives are not providing equivalent input.

What Families need and what needs to change?

To prevent harm, I believe the following are essential:

• Recognition of the physical toll on families and acknowledgement of the psychological toll. Families want professionals to recognise the cumulative trauma of constant risk, the exhaustion of long-term vigilance, and the impact on siblings and family dynamics.
• Pica carries real immediate medical danger, especially where ingestion is unwitnessed or repetitive. Parents and carers are expert witnesses and their knowledge should be treated as clinical information. When a parent says that this is not normal for their relative and that something is wrong, this insight is based on constant lived observation and should raise concern, not be reassured away. Symptoms may lie behind injury.
• Professionals who understand that pica is not a phase, it is not a mild sensory behaviour, and it is not a risk that can be judged solely on presentation.
• Professionals who recognise that serious internal injury can occur before visible symptoms. Waiting for distress, vomiting, or acute pain may be too late, and early imaging and escalation can prevent catastrophic outcomes.
• GPs, Teachers, Social Workers and Clinicians who understand pica are essential, as pica champions or leads within teams.
• Professionals who listen to lived experience. This helps professionals to understand not just what happened, but what it felt like and why improvement matters
• A partnership approach. From a family perspective, good care feels like being listened to without having to fight, being taken seriously from the outset, and decisions made clearly. Alongside shared responsibility for safety, and respect for lived experience together with clinical expertise. Families living with pica are not over-anxious, they are informed. They are not exaggerating risk, they are managing it every day. Healthcare professionals who listen, escalate appropriately, and communicate clearly can reduce not only physical harm but long-term trauma for entire families.
• Families should not be blamed for access issues.
• Families need practical support in relation to home safety advice, environmental adaptations, specialist equipment, respite and safe environments outside the home. Parents need schools and services trained in pica, safe outdoor and sensory spaces, and places where their child can participate without constant fear.
• Training on pica-related risk, not just ingestion events.
• Clear, consistent medical pathways matter. Families need clear protocols for pica-related ingestion with consistency across GP, emergency department, paediatrics, ambulance, and surgical teams and no reliance on families to explain risk at every point of contact. Clear clinical pathways exist for other serious, potentially life threatening, conditions (i.e. heart attack, stroke, epilepsy etc) and the same should apply for pica. A pathway for witnessed and unwitnessed ingestion, for consumption of actual life threatening materials like batteries, metal, lead, magnets or sharp objects, and non-life threatening materials that still remain dangerous to health.
• Families need honest explanations of risk, clear reasoning for decisions, to be involved, not side-lined, and to feel believed and supported during waiting periods. Uncertainty increases trauma and clarity builds safety. Therefore communication is as important as clinical action.Silence or vagueness increases fear.
• Risk Assessment pathways i.e. imaging, benefits versus risks, a traffic light approach. I have had requests for x-ray declined, despite ongoing cumulative concerns relating to my daughters health, because I have not witnessed her swallowing an item or object which could pose as life threatening, and she isn’t presenting as extremely clinically unwell. I have been told the risks outweigh the benefits in terms of exposure to radiation and to continue to monitor bowel motions with laxatives and anti-reflux medications. There needs to be more certainty around what triggers the need for x-ray or scan.
• There needs to be a clear referral route from GP to named specialist clinic with joined-up multidisciplinary care, practical home and school safety support, regular medical monitoring, and emergency protocol for high-risk ingestion.
• Annual or twice-annual pica clinics for clinical monitoring and oversight with regular testing (BM samples, urine analysis, bloods analysis etc.), a person-centred approach and imaging if necessary.
• In the absence of any other associated medical diagnosis young people with pica cases should be jointly managed between a Social Worker and a Lead Nurse.
• Assessment should be holistic in nature and include nutritional deficiencies, gastroenterological complications, dental issues, triggers for pica, sensory needs, anxiety or emotional regulation, and environmental aspects (i.e. home safety, school safety, and access to safe outdoor spaces).
• As with epilepsy and other complex medical diagnosis, there should be a person-centred care plan and referral to specialist services. The GP should refer to relevant teams depending on need, including an urgent medical response if dangerous ingestion has occurred (if the young person is eating magnets, batteries, sharp objects, chemicals) with immediate A&E attendance, x-ray imaging, and surgical or medical intervention.
• An after diagnosis follow-up pathway is needed. In my own family’s case we weren’t specifically and formally told Erin had pica. Instead I found it in her paediatric review notes and it was only obvious to me because of my prior experience with my brother.
• Recognition of Polydipsia within the framework or pathway, so it does not become forgotten, bearing in mind the risks associated with liquids which could be hazardous to health or life threatening (e.g. cleaning materials, alcohol, topical creams, wipes etc.) and risks associated with drowning (e.g. bath water, puddles, toilet water, outdoor environments etc.). My daughter needs liquids restricted and monitored and more awareness needs to be spread in relation to this condition alongside pica.
• I strongly feel pica should be included in inspectorates and regulatory bodies. It is a significant health and safeguarding risk. Pica is not a minor behavioural issue and should be incorporated into Inspection standards.
• A specific focus on high-risk ingestion, behaviours, environmental considerations, safety checks and individualised risk plans and staff should receive mandatory awareness training where relevant.
• In addition, an understanding of medical and sensory aspects, care planning, protocols for monitoring, prevention and emergency response, safeguarding Frameworks and policy and procedures are needed.
• Recognition of pica as a significant health risk and a factor in neglect or unsafe care environments.