How to get a CONI movement monitor after a previous baby died

What is CONI, and who is it for?

Care of Next Infant (CONI) is a national programme coordinated by The Lullaby Trust and delivered by local health-visiting teams. It is for parents who are expecting, or have just had, a baby after the sudden unexpected death of a previous baby. Some areas also offer the programme to parents bereaved for other reasons — the Trust says to ask your midwife.

The monitor is one piece of a package, not the product you are ‘buying’. The Trust’s about page lists regular health-visitor contact, a movement monitor that alarms if movements stop for longer than 20 seconds, basic life support training, a symptom diary, the Baby Check app, a detailed weight chart, a room thermometer with safer-sleep guidance, and a healthcare ‘passport’ so the baby can be seen quickly if you are worried.

This page is a parent-facing path to the local coordinator. It is not a retail listing and it does not rank brands. If you already have a shop-bought pad, still ask about CONI: the programme is the trained visits and the plan if an alarm sounds, not only the plastic.

How do I ask for CONI, step by step?

Enrolment is done by a CONI coordinator — a health visitor trained to teach the programme — not by adding a monitor to an online basket. The Lullaby Trust’s campaign page says coordinators enrol families, and that the local health-visiting team is the first door if you do not have a name yet.

1. 1
   Tell the midwife or health visitor Say you have had a sudden unexpected death of a baby and you want to know whether CONI is offered locally. Do this in pregnancy if you can: the professionals’ handbook says meeting the team before the birth avoids handing over kit in the postnatal ward rush.
2. 2
   Check whether your area runs CONI The Trust’s about page says CONI is available in many areas of England, Wales and Northern Ireland, not everywhere. Use the county checker on the Campaign for CONI page, then confirm with the health-visiting team — a web tool can lag behind a local decision.
3. 3
   Ask to be put on to the local coordinator The coordinator discusses what the area actually offers and agrees a plan with you and the other professionals. They complete the enrolment form with the parent(s). That form is not something MayTally can submit for you.
4. 4
   Email the national CONI inbox if the local door is unclear Write to [email protected]. The Trust publishes that address for availability questions. If CONI is not on offer where you live, the campaign page says the Trust contacts the local health-visiting service when it hears of a bereaved family, to press for extra support.
5. 5
   If there is no CONI locally, use the campaign route as well The Trust asks families to email their MP (a template sits on the campaign page), the local health-visiting team, the Director of Public Health and the Integrated Care Board. That is advocacy for the next family as well as a nudge for yours — it is not a same-week substitute for a coordinator.

Is the monitor a loan, a gift, or something I buy?

It depends on how your local team stocks kit, and on whether The Lullaby Trust has a donated batch at that moment. The about page uses the word borrow. The coordinator factsheet says every area should keep its own local stock, bought from retailers or distributors, not via the Trust, and that Trust donations are sporadic extras. The professionals’ handbook says a movement monitor may be lent or given, or the family may be supported to use a monitor of their choice — and that monitors used on CONI should have medical-device certification, often shown as MD.

National gift monitors are sent to the family’s address when the coordinator has consent to share it; delivery is described as about five working days and the parcel does not fit a standard letter box. If nothing arrives, the coordinator emails [email protected]. That is a logistics note, not a promise that a unit is sitting in a warehouse for every postcode.

How long does CONI last, and what if my area does not offer it?

The about page says the programme is usually offered for 6 months after the baby is born, and may run longer depending on circumstances. The coordinator factsheet adds that 85% of sudden deaths occur in babies under six months, so for most babies monitoring is planned to stop by then, and that withdrawal should be gradual — fewer hours each day — with the health visitor helping to plan the step-down.

CONI is not a UK-wide entitlement. It exists where a local authority or health trust has chosen to deliver it. The about page names many areas of England, Wales and Northern Ireland. Scotland is not listed on that page. If the county checker or your midwife says no, you still have the Trust’s bereavement helpline (0808 802 6868) and baby-safety helpline (0808 802 6869), and the campaign inbox above.

A movement monitor on CONI is still a movement monitor. The Lullaby Trust says there is no research showing monitors help prevent SIDS, and that parents issued with a monitor need a plan if the alarm sounds and teaching in basic life support. For how to read MD on a box you already own, see how to tell if a movement monitor is a medical device.

What should I not expect CONI to be?

• Not an Amazon substitute. Coordinators teach a named local kit. Marketplace ‘breathing pads’ with no MD mark are a different product class — see the MD-mark guide.
• Not a clinical apnoea service. CONI uses simple movement monitors (mattress pad, taped skin contact, nappy clip). The Trust does not put heart-rate or pulse-oximeter gadgets on the programme because extra numbers can add anxiety.
• Not a same-week postal shop. Gift stock is occasional. Local loan stock depends on the team in front of you.
• Not a same-week promise that a monitor will be in the house before birth. Ask early, and keep the midwife in the loop if dates slip.

In shortStart with the midwife or health visitor, then the local CONI coordinator, then [email protected]. Official records show CONI is a local health-visitor programme that often includes a movement monitor for about six months — they do not show a nationwide shop or a promised parcel for every bereaved parent.