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Policies, Procedures, Guidelines and Protocols

Title Care of the Next Infant (CONI/CONI Plus) Programme Guideline

Trust Ref No 2023-36352

Local Ref (optional) Not required

Main points the document covers

This guideline describes which families are eligible for the CONI / CONI Plus Programme, how referrals are made and how the CONI Programme is delivered.

Who is the document aimed at?

All staff who work with children and their families within Shropshire Community Health NHS Trust (SCHT) and the Shrewsbury and Telford Hospital NHS Trust (SaTH)

Author Alison Wood, Lead Nurse for the Child Death Overview Process (CDOP).

Approval process

Approved by (Committee/Director)

Safeguarding Group

Approval Date 07.06.2017

Initial Equality Impact Screening

Yes

Full Equality Impact Assessment

No

Lead Director Director of Nursing and Quality

Category Clinical

Sub Category Health Visiting

Review date 07.06.2020

Distribution

Who the policy will be distributed to

All staff working with children and their families, SCHT and SaTH.

Method Electronically to senior managers within maternity and children’s services SaTH and electronically to all staff via the Trusts’ intranets.

Document Links

Required by CQC No

Required by NHLSA

No

Amendments History

No Date Amendment

1 09.06.2014 New guideline developed and approved

2 09.06.2016 Contact details updated

3

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Contents:

Page 2 1.0 Contents

Page 3 2.0 Introduction

Page 3 3.0 National Organisation of CONI

Page 3 4.0 Local Organisation of CONI

Page 4 5.0 Definitions

Page 4 6.0 Referral to the CONI Programme

Page 4 7.0 What the CONI/CONI Plus Programme offers

Page 5 8.0 Role of the CONI Co-ordinator

Page 6 9.0 Monitoring

Page 6 10.0 References

Page 6 11.0 Associated documents

Appendix 1 CONI/CONI Plus (excluding ALTE) Referral Form

Appendix 2 CONI Plus Referral Form for ALTE

Appendix 3 CONI Co-ordinator Checklist

Appendix 4 SCHT CONI Loans Agreement Form

Appendix 5 CONI Professionals’ Meeting – Terms of Reference

Appendix 6

List of CONI Professionals and CONI Hospital Links

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1.0 Introduction 1.1 The Shropshire Community Health NHS Trust (SCHT) works in partnership with

the Shrewsbury and Telford Hospital NHS Trust (SaTH) and the National Care of the Next Infant (CONI) Centre in London to ensure that the CONI/CONI Plus Programme is available to all eligible families and delivered sensitively and effectively to those eligible families wishing to receive the CONI Programme living in Shropshire and Telford & Wrekin.

1.2 There is great public awareness of Sudden Unexpected Death in Infancy (SUDI), sometimes referred to by the public as ‘cot death’ and it is therefore common for parents with young babies to worry about the possibility of SUDI. When a family has already suffered this tragedy it is inevitable that any future pregnancies and first few months of subsequent children’s lives will be a time of both joy and anxiety.

1.3 The Care of Next Infant Programme (CONI for short) was developed in the 1980s by the Lullaby Trust (formally known as the Foundation for the Study of Infant Deaths) to provide extra care and support to families who have experienced a SUDI. The Programme started in Shropshire in January 1996 and is delivered through the SCHT’s Health Visiting Service in partnership with the Women and Children’s Centre, SaTH.

2.0 Purpose 2.1 The purpose of this guideline is to clarify:

The aim of the CONI/CONI Plus Programme

Criteria for referral to the CONI/CONI Plus Programme

The role of the CONI Co-ordinator

The role of the family Health Visitor 3.0 National organisation of CONI

3.1 The CONI Programme is managed by the National CONI Co-ordinator, based at:

The Lullaby Trust, 11 Belgrave Road, London, SW1V 1RB email coni@lullabytrust.org.uk

4.0 Local Organisation of CONI 4.1 The CONI Programme is delivered through the SCHT’s Health Visiting Service in

partnership with the Women and Children’s Centre, SaTH. A list of CONI Professionals (including CONI Co-ordinators and CONI Paediatrician) and CONI Links within SaTH will be maintained and made available alongside this guideline (Appendix 6).

4.2 The local CONI Paediatrician provides medical advice and support to the

professionals supporting families on the CONI Programme (in conjunction with the General Practitioner, Consultant Paediatrician/Neonatologist etc.). This may include seeing the family in the antenatal period on request of the local CONI Co-ordinator, to give the parents the opportunity to discuss the findings concerning their previous child’s death and the care of their future child.

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4.3 The local CONI Co-ordinators are Health Visitors with an interest in supporting families on the CONI Programme. The CONI Co-ordinators use their additional training to support Health Visitors and other Practitioners by: acting as ‘Champions’ for the CONI Programme, providing support and advice, assessing referrals, setting up families on the CONI Programme and completing the CONI paperwork, taking families off the CONI Programme and returning completed paperwork to the National CONI Office in London.

5.0 Definitions 5.1 Sudden Unexpected Death in Infants (SUDI)

‘The death of an infant which was not anticipated as a significant possibility for example, 24 hours before the death; or where there was a similarly unexpected collapse or incident leading to or precipitating the events which lead to the death.’ Working Together to Safeguard Children and Young People, 2015.

5.2 In approximately half of these deaths, following thorough investigation which may include a specialist post mortem, no cause of death will be found. These cases are often classed as ‘unascertained’ or Sudden Infant Death Syndrome (SIDS).

5.3 Sudden Infant Death Syndrome (SIDS)

‘The sudden and unexpected death of an infant less than one year of age, with onset of a fatal episode apparently occurring during sleep, that remains unexplained after a thorough investigation, including performance of a complete autopsy and review of circumstances of death and clinical history.’ Krous et al (2004)

5.4 The majority of these deaths occur during a period of sleep. However, the use of the term ‘cot death’ should be avoided as these deaths can occur in any environment (cot, Moses basket, baby chair, bed etc.) and at any time of day.

5.5 Apparent/Acute Life Threatening Event (ALTE)

‘A sudden and unexplained event which is frightening to the observer who perceives the baby to be at risk of death and feels there is a need to take some immediate action. The event has a defined onset and offset and does not lead to death or persistent collapse. The baby displays a change in a least two of the following: colour, tone, consciousness, movement, and breathing.’ Gibb and Waite (1998)

6.0 Referral into the CONI Programme 6.1 It is hoped that all eligible families are made aware and offered the CONI

Programme. It is important to remember that families who do not wish to go on the CONI Programme should still have their needs assessed and additional support arranged as required.

6.2 The CONI Programme is available for any parent/s (mother and/or father) who have experienced a Sudden Unexpected Death in Infancy (SUDI). The new baby may be with a different partner. Early referral to the CONI Programme once the pregnancy is viable (i.e. 24 weeks’ gestation) can be made by the Midwife, GP, Health Visitor etc.

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6.3 The CONI Plus Programme is available for any parents who have had a close relative who has died from SUDI/SIDS i.e. their sibling or niece/nephew. Early referral to the Programme once the pregnancy is viable (i.e. 24 weeks’ gestation) can be made by the Midwife, GP, Health Visitor etc.

6.4 The CONI Plus Programme is also available to parents where their baby has had an Apparent Life Threatening Event (ALTE) requiring hospitalisation. In these cases referral for the CONI Plus Programme must be approved by a Consultant Paediatrician.

6.5 CONI/CONI Plus and CONI Plus (ALTE ONLY) referral forms are available within

this guideline (Appendix 1 and 2). Telephone discussion regarding each case is recommended between the referrer and the local CONI Co-ordinator (Appendix 6)

7.0 What the CONI/CONI Plus Programme offers

7.1 The Programme offers a structured but flexible approach to facilitating

professionals to support families by offering:

Weekly home visits by the family Health Visitor (reducing over time as agreed with the family)

Reinforcing advice on safer sleeping (Lullaby Trust Leaflets via https://www.lullabytrust.org.uk/).

Room temperature thermometer

Weight charts and weekly weights by family Health Visitor at home or clinic setting.

Baby Check leaflet

Symptom diary

Movement monitor (Appendix 4) 7.2 The CONI Co-ordinators will follow the national guidance: CONI Guidelines for

Users, available in every CONI start-up pack and general CONI information available via CONI guidance Lullaby Trust

8.0 Role of the CONI Co-ordinator 8.1 The Local CONI Co-ordinator will:

advise the referrer as to whether the family meet the criteria for enrolment onto the CONI Programme;

meet the family to discuss the CONI Programme;

meet the family (this should be with the family Health Visitor) to set up the CONI Programme and complete appropriate paperwork;

inform professionals involved with the family that they are on the CONI Programme;

act as a resource to the family health visitor, GP and other professionals working with the family;

calculate when the family should come off the CONI Programme and arrange to meet with them to complete CONI paperwork which is then sent to the CONI Centre in London. This should be flexible, some families may choose to come off earlier than calculated and some families may need to stay on a litter longer.

8.2 All families should be offered training in basic life support. This should be done

before the baby is born or in the case of an ALTE, before the baby leaves hospital by the appropriate member of the hospital team. Basic life support training should

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be reinforced by the CONI Co-ordinator, within the home environment to include practical aspects such as ease of ambulance services finding house etc.

8.3 A CONI Programme checklist (Appendix 3) is available to assist the CONI Co-

ordinator in ensuring all aspects of the CONI Programme are delivered and documented.

9.0 Monitoring compliance 9.1 A CONI Professionals’ Group will meet quarterly to ensure that there is a

sustainable, effective CONI Professional Team, with adequate resources to ensure that the CONI Programme is available to all eligible families and delivered sensitively and effectively to those eligible families wishing to join the CONI Programme (Full Terms of Reference: Appendix 5).

10.0 References 10.1 The CONI programme is managed by the National CONI Co-ordinator, The Lullaby

Trust, 11 Belgrave Road, London, SW1V 1RB email coni@lullabytrust.org.uk

10.2 Further information can be found on The Lullaby Trust’s website via The Lullaby

Trust 11.0 Associated documents 11.2 Movement/mattress monitors are supplied by the Shropshire Community Health

NHS Trust and CONI Co-ordinators should ensure that the manufacturers’ guidelines are adhered to.

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Appendix 1 – CONI/CONI Plus (excluding ALTE) Referral Form

Full Name of Mother Date of birth

NHS number Ethnicity

Address

Contact number/s

Father’s name Date of birth

Other children (names and ages)

General Practitioner Name

Practice address

New baby EDD Planned place of birth

Any concerns?

Midwife name Contact details

Reason for referral

If previous child death please complete:

Name of baby Age when died

Relationship to parents

Month/year when died

Circumstances/cause of death

I confirm that I have raised awareness of the CONI/CONI Plus scheme with mother / parents and they are aware that they will be contacted by a CONI co-ordinator to discuss the scheme in more detail. Yes/No

Name Title

Contact details Signature Date

Please send completed form to: Alison Wood, Lead Nurse for CDOP by:

E-mail: alison.wood9@nhs.net Phone: 01952 580387

Post: Halesfield 6, Telford, Shropshire, TF7 4BF

Or discuss by phone with the Local CONI Co-ordinator, Paediatric Liaison Health Visitor

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Appendix 2 – CONI Plus Referral Form for ALTE Infants

Full Name of Child Date of birth

NHS number Ethnicity

Address and phone number

Mother’s name Date of birth

General Practitioner Name

Practice address

Health visitor Name

Base address Contact details

Consultant Paediatrician Current location of child

Details of ALTE

Diagnosis/treatment

Hospital follow up plan

(OPA/open access)

CONI Plus requirements (please circle)

Resuscitation training Weekly health visitor visits Weekly weigh of

the child

Symptom diary Baby check Apnoea monitor

Other issues

All referrals for these babies should be made by phone via the CDOP office: 01952 580387

Name

Title

Contact details Signature Date

Completed forms will be collected by a CONI co-ordinator when visiting the family prior to discharge or can be sent to Alison Wood, Lead Nurse for CDOP at:

Post: Halesfield 6, Telford, Shropshire, TF7 4BF Phone: 01952 580387 Email: alison.wood9@nhs.net

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Appendix 3 – CONI Co-ordinator Checklist

CONI Co-ordinator Checklist Mother’s name…………………………………………………….NHS number…………………... Infant’s name……………………………………………………...NHS number…………………… CONI/CONI Plus (please circle)

Original referral

Date received:

Referrer name:

Contact made with parents by Co-ordinator and information booklet sent

Yes/No

Date

Initial Visit

Date booked:…………………………………………………………………………………………… CONI Co-ordinator:……………………………………………………………………………………. Health Visitor:…………………………………………………………………………………………..

Discussed the following: Yes/No

Date

Resuscitation (delivered by:…………………………)

Baby check

Sheffield weight charts

Symptom Diary

Weekly visits by HV

HV Record Card

CONI Passport

Room thermometer

Respiration monitor (if given complete Loans Agreement Form)

Sensors for monitor (6 initially) (Advise HV to prescribe Mefix)

Alarms Record

Other publications/information

CONI Co-ordinator Information

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Liaison: CONI Liaison letter sent/documentation in records: Yes/Not

applicable Date

Midwife Antenatally: document in mother’s hand held records (midwifery)

Health Visitor

GP

Paediatric Liaison Health Visitor (for Hospital info)

Safeguarding Office Halesfield 6, Telford, Shropshire, TF7 4BF

Others:

Paperwork - registration to CONI office, London

Follow up visit by Co-ordinator – 6/7 months:

Date visit booked for:…………………………………………………………………………………..

Yes/No

Date

Equipment returned

Paperwork completed and sent to CONI office, London

SCHT paperwork filed in infant’s HV records

Other comments:

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Appendix 4 – SCHT CONI Loans Agreement Form

Loan agreement – CONI scheme Items loaned by the CONI Co-ordinators remain the property of the Shropshire Community Health NHS Trust (SCHT). Only equipment approved by the National CONI Centre (London) are available for loan from SCHT, as part of the CONI scheme. Date:………………… Baby’s name:……………………………………NHS number:……………………… Address:……………………………………………………………………………………………..................... CONI Co-ordinator……………………………………………. Base/Contact details……………………… Family HV…………………………………………………... Base/Contact details………………………

Type Model SCHT asset number

Next check due or repair only

Date returned

.

Parents: I acknowledge receipt of the above equipment on loan. I have been trained in setting up and using the equipment including the use of any alarms. I understand how to care for the equipment and how to get consumables. I have been made aware of potential risks associated with the use of any equipment. I have also been left written instructions. I know who to contact for advice about the equipment and that replacing faulty equipment may not be possible out of normal working hours. Parent’s name:………………………………………… Signature:…………………………………… CONI Co-ordinator/HV: I acknowledge that the above equipment is suitable for home use and that I have trained the above parent in setting up and using the equipment including the use of any alarms. I have explained how to care for the equipment and how to get consumables. I have explained any risks associated with the use of any equipment (risk of strangulation with sensor leads must be discussed if used). I have made parents aware of who to contact for advice about the equipment and that replacing faulty equipment may not be possible outside of normal working hours. CONI Co-ordinator name:……………………………… Signature:……………………………………… HV name:……………………………………………….. Signature:………………………………………..

Please file this form in the child’s health visiting records.

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Appendix 5 – CONI Professionals’ Meeting – Terms of Reference

Care of the Next Infant (CONI) Programme – CONI Professionals’ Meeting The Shrewsbury and Telford Hospital NHS Trust and Shropshire Community Health NHS Trust are committed to working together to offer the CONI Programme, with support from the National CONI Centre in London, to all eligible families living within Shropshire and Telford & Wrekin. The overall aim of the CONI Professionals’ Meeting is to ensure that there is a sustainable, effective CONI Professional Team, with adequate resources to ensure that the CONI Programme is available to all eligible families and delivered sensitively and effectively to those eligible families wishing to join the Programme. Membership: Named Paediatrician for CONI Lead Nurse for CDOP CONI Co-ordinators Paediatric Liaison Health Visitor (Hospital based) Bereavement Midwife Manager - Shrewsbury Midwife Led Unit/Community Manager - Wrekin Midwife Led Unit/Community Objectives:

Act as a steering group for the maintenance and development of the CONI Programme.

Maintain an up to date contact list of CONI Professionals.

Maintain appropriate documentation (e.g. referral forms, information leaflets) that meets the needs of the National CONI Centre as well as local need.

Monitor resource requirements (human and equipment/consumables) to deliver the Programme and alert Senior Managers to anticipated and/or real shortfalls.

Ensure medical device alerts have been acted upon.

Prioritise requests for charitable funding for replacement/additional equipment to The Lullaby Trust (with approval from SCHT’s Senior Managers).

Source appropriate learning opportunities for CONI Professionals and ensure local representation at Regional CONI Updates Meetings.

Ensure the local health economy is aware of the CONI Programme and how to refer eligible families.

Frequency of Meetings: Quarterly. Minutes/notes from meetings to be copied to:

Clinical Services Manager (Universal), Children's and Families Services, Shropshire Community Health NHS Trust.

Lead Midwife for the Community, Shrewsbury and Telford Hospital NHS Trust.

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Appendix 6 Care of the Next Infant (CONI/CONI Plus) Professionals:

Name Title Base Phone/ E-mail Comments General contact number for enquiries: Sam Wheatley

CDOP Administrator and Secretary to SCHT Safeguarding Team

CDOP Office Halesfield 6, Telford TF7 4BF

01952 580387 sam.wheatley@nhs.net

Monday - Friday 9am-5pm

Dr Sam Postings Associate Specialist Paediatrician, Named Doctor for Safeguarding and Lead Doctor for CDOP and CONI

Stepping Stones Centre Brunel Road Malinslee Telford, TF3 2BF

CDOP Office or Stepping Stones on 01952 567300 Mobile: 07794 640276 sam.postings@shropcom.nhs.uk

Monday - Friday 9am-5pm

Alison Wood Lead Nurse for CDOP CDOP Office Halesfield 6, Telford

CDOP Office or 01952 580387 Mobile: 07826 901962 alison.wood9@nhs.net

Monday - Friday 9am-5pm

CONI co-ordinators:

Michelle Ostrowski T&W

Telford and Wrekin / Shifnal and Albrighton

Health Visitor Dawley HV Team, Webb House, Dawley, Telford

01952 630508 Mobile number: 07964 209037 m.ostrowski@nhs.net

Mon, Tues, Wed and Friday.

Paula Pierce T&W

Health Visitor Woodside Medical Practice Woodside, Telford

01952 587379 paulapierce@nhs.net

Mon, Tue and Weds

Wendy Hayeck T&W North

Health Visitor Montford House HV team Suite 1, St George’s court, Donnington, Telford

01952 616284 07920 782134 wendy.hayeck@nhs.net

Mon, Tues, Thurs and Fri 9-5pm

Francesca Evans T&W South

Health Visitor - can cover Shifnal/Albrighton areas

Wellington HV Team Wellington Community Health Centre, Chapel Lane, Wellington Telford

francesca.evans2@nhs.net 01952 505684

Monday – Thursday 9-4pm

Roisin Davies South Shropshire

Health Visitor

Northgate Health Centre Bridgnorth, Shropshire

01746 711952 roisin.davies@nhs.net

Monday-Friday 9am to 3pm

Rachel Lock Shrewsbury and Atcham

Health Visitor

Coral House, 11 Longbow Close, Harlescott Lane Shrewsbury

07896 733752 rachel.lock@nhs.net

Monday-Friday 9am-5pm

Kim Ashford West Shropshire/ Oswestry area

Health Visitor

Oswestry Health Centre Thomas Savin Road Oswestry, Shropshire

01691 663608 kim.ashford@nhs.net

Tuesday-Thursday 8.30am- 5pm Friday 9am-3pm

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Useful links at SaTH:

Name

Title

Base

Phone/email Comments

Louise Hanks Paediatric Liaison Health Visitor (SCHT)

Royal Shrewsbury Hospital/Princess Royal Hospital

01952 641222 (PRH) 01743 261000 (RSH) louise.hanks@nhs.net

Monday – Friday 8am - 4pm

Jan Latham Specialist Bereavement Midwife

Princess Royal Hospital 07807 726541 jan.latham@sath.nhs.uk

Monday – Friday 9am - 5pm

Sam Davies Unit Manager Neonatal Unit Princess Royal Hospital

01952 641222 samantha.davies@sath.nhs.uk

Monday – Friday 9am -5pm