Royal Surrey County Hospital - When a baby or child dies

NHS Royal Surrey NHS Foundation Trust

Information for those who are bereaved when a baby or child dies

Daisy chains Daisy chains we made seem so far away Petals soft reminding us Of games we played and smiles we shared In gardens bright with days of laughter Simplicity in everything, holding you always In all our memories and the years When sad today we rain down tears Remembering you in every place, at every time Somehow looking through Love still shines from us to you Anon

We would like to offer you and your family our deepest sympathy following the death of your baby or child.

We know that this is a devastating and distressing time for families.

Parents are often given lots of information shortly after their child’s death which, at the time, can be overwhelming.

Please take this booklet away with you so that it is available if you need it. We hope it may be helpful in answering some of your questions and guiding you through the next steps you have to take.

It may not answer all your questions, so please contact us at the Bereavement Service at any time if you need more information.

The Named Consultant for your child is:.................................................................................................

Your family’s key worker is:..........................................................................................................................................

The telephone number of the ward/department is: ................................................................................................................................................................................................................................

Bereavement Service: Royal Surrey County Hospital 01483 303361

Contents What happens now?................................................................................................................................................... 1 Can I see my child?........................................................................................................................................................ 2 I’d like to create some lasting memories of my child, is this possible?................................................................................................................................................................... 3 Can I donate my child’s organs?................................................................................................................. 3 I’d like my child to be seen by a faith leader, can this be arranged?................................................................................................................................................ 4 What does my family’s key worker do?.......................................................................................... 5 Can I take my child’s body home?........................................................................................................... 6 Why has my child’s death been referred to the Coroner?. ................................ 7 Why does my child have to have a post mortem examination and what does this mean?................................................................................................................................. 8 Why were the police and children’s social services called when my child died?................................................................................................................................................... 9 How do I tell my child’s brothers and sisters, and what support is there for them?................................................................................................................................. 10 Who do I need to tell that my child has died?. .................................................................... 12 What about my child benefit and other payments?................................................... 12 What about my child’s social media pages?............................................................................ 13

Contents continued How do I obtain my child’s death certificate?....................................................................... 14 How do I register my child’s death?..................................................................................................... 15 The Death Certificate................................................................................................................................................. 15 Register Office for Surrey (Guildford Office) map. .......................................................... 16 How do I arrange my child’s funeral?. ............................................................................................... 17 What is the Child Death Review process?. ................................................................................. 18 What support is there for me as a bereaved parent?............................................... 19 Returning to work........................................................................................................................................................... 19 How can other family members and friends support me?................................ 20 Local and national bereavement support................................................................................... 21

What happens now?

The loss of a child is a time of great distress for parents, siblings, family and friends. Even at this difficult time there are certain decisions that must be made. This leaflet is one way in which we aim to support you through the next steps, choices and decisions.

Please ask your key worker or any member of staff if you have any questions or require any additional information not contained within this leaflet.

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Can I see my child?

In most circumstances staff will be able to support you to spend as much time as you wish with your child, for as little or as long as feels right for you. If you want to, you may be able to hold your child or lie next to them. If you are not able to see or hold your child straight away, a member of staff will explain to you why this is and when you may be able to do this.

You may wish for siblings and other family members to see your child.

Where possible, staff will support you with this but we ask that a parent accompanies other visitors.

There will come a time when we need to move your child away from the ward area and we appreciate how hard it must be for you to leave your child here with us at the hospital. When you are ready, your child’s nurse will transfer your child to the Mortuary into the care of the staff there. If you have one with you, you may leave a toy or blanket with your child or you can bring one later.

If you wish, you may be able to see your child in our Bereavement Suite before they are transferred to the funeral directors. Please contact our Specialist Nurse who will be able to assist with arranging this at a time convenient for you.

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I’d like to create some lasting memories of my child, is this possible?

Many parents wish to create some lasting memories by taking handprints and footprints, a lock of hair, and sometimes photographs.

In most circumstances we are able to support you with these and staff will be able to explain what can and can’t be done.

Sometimes parents are uncertain whether they would like to have these at this time. With your permission, we may be able to create these memories and store them with your child’s notes for a time and you can ask for them later.

‘I decided that it would be better to have a photo I might never look at than to want a photo that I do not have‘ A Bereaved Dad

Can I donate my child’s organs?

Every year the lives of many people are saved with the help of donated organs. However, you may not realise that donated tissue, such as eyes, skin, bone, and heart valves can also save or dramatically improve the quality of life for others.

Dependent on the circumstances your child may be able to donate one or more organs or tissues, offering invaluable help to others.

Organ and tissue donation is best undertaken within 24-48 hours of death. We recognise that a decision such as this is personal, and there is absolutely no pressure or need to discuss this if you do not wish to do so. However, if you would like more information about donations, please speak with a member of staff as soon as possible.

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I’d like my child to be seen by a faith leader or someone who can give spiritual care, can this be arranged?

Our Spiritual Care Team is here to support children and families of all faiths and none. The Team is able to offer information and advice as well as a supportive listening ear for parents and families.

If there are any religious or cultural practices that you want to carry out for your child, please let us know and we will do all we can to help. Please ask a member of staff to call the Team if you would like to see them.

We have a Prayer Room at the Hospital. It is usually open 24 hours a day, seven days a week, and are available to anyone for quiet reflection, personal prayer, or a quiet place where you can just be.

Royal Surrey County Hospital, Spiritual Care Team, Level B, West Wing

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What does my family’s key worker do?

Every family whose child (under 18 years old) dies should have a key worker who can act as a single point of contact, to support you through the child death review process and signpost you and your family to appropriate bereavement support.

You should have been informed of the name of your key worker shortly after your child died.

For Sutton families this is often our Specialist Nurse, but this role may be shared with another professional who is known to you and your family.

If you are unsure who your key worker is please contact our Specialist Nurse and they will be able to assist you.

For Surrey families this is often a Specialist Nurse from the Surrey CDR Service.

5

Can I take my child’s body home?

There are some circumstances where this is not possible, however, if a post mortem is not required and the doctor has completed the medical certificate of death, this may be possible to arrange.

You could take your child home, to a local hospice or to the funeral directors.

It is best to arrange this through a funeral director who can collect your child from the hospital and give you ongoing advice and support once you are home.

If you are unsure or have any other questions, please feel free to discuss them with staff at the hospital or the funeral director.

6

Why has my child’s death been referred to the Coroner?

In certain circumstances your child’s Doctor is unable to write a Medical Certificate of Cause of Death and therefore they must legally inform the local Coroner. This is usually in cases where: • • • •

The death is sudden and unexpected The cause of death is not known The death occurred as the result of an accident or unnatural cause The death occurred after surgery

The Coroner will then consider the circumstances around your child’s death and decide what happens next: • The Coroner may instruct your child’s Doctor to write a Medical Certificate of Cause of Death. You will then be able to proceed with registering your child’s death and arranging their funeral.

• The Coroner may decide to investigate your child’s death further, in which case a post mortem examination may be required. Your child’s Doctor and the Coroner’s Office will explain this process in more detail to you if required.

Surrey Coroner (for deaths at Epsom Hospital) 01483 404530 www.surreycc.gov.uk/birth-death-and-ceremonies/death/ coroner

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Why does my child have to have a post mortem examination and what does this mean?

Post mortem examinations are sometimes necessary in order to establish the cause of death and are often required by the Coroner.

Where the Coroner has requested a post mortem, this becomes a legal obligation and although you can raise any objections that you may have, there is no right to refusal. However, we will always inform you of where your child is and assure you of your child’s compassionate care.

Your child may need to be moved to another hospital so that a specialist paediatric pathologist can carry out the examination on behalf of the Coroner. This will be discussed with you before it happens.

Sometimes, even when the cause of death is known, your child’s Doctor may ask your consent for a hospital post mortem examination.

They can be great value in helping to gain further information about an underlying illness, identifying other conditions which your family may need to be aware of, and for teaching and research to help others in the future.

A full post-mortem examination, involves the detailed examination of each of the main body systems including the brain and all the contents of the chest and abdomen. It will normally include the removal and retention of very small tissue samples for examination under a microscope. The Coroner or Doctor will discuss this with you.

The final post mortem examination report may take several months to be completed, depending on the number and type of tests conducted.

The Coroner will then decide how to pass the results to you. Your key worker will be able to arrange an appointment with your child’s paediatrician or neonatologist, to go through this report with you if you wish.

If you wish, you may be able to see your child again after a post mortem examination and before your service of remembrance.

8

Why were the police and children’s social services called when my child died?

Whenever a child dies suddenly and unexpectedly it is routine practice to inform the police so that they can fully investigate the circumstances of the child’s death, on the behalf of the Coroner.

Usually, shortly after your child has died a senior police officer will speak with you to understand the circumstances of your child’s death.

If you wish to have a member of the nursing or medical team with you for support during this discussion, please ask.

It is also routine practice to inform the local Children’s Social Services of every child who dies who normally resides within their locality. This enables us to ensure that support is available locally for parents and siblings. Depending on the circumstances of your child’s death you may be contacted by your local Children’s Social Care Team with an offer of support.

9

How do I tell my child’s brothers and sisters, and what support is there for them?

Children’s understanding of death changes as they grow and develop a greater understanding of the world in which they live. Like adults, children grieve in many ways and may experience a range of emotions following the death of a loved one.

Infants Infants have no understanding of death but from an early age will sense that an important person is missing. They may cry more and older infants may search for the person who has died.

Pre-school age children Young children begin to develop an interest in the idea of death but cannot understand the permanence of it. They may show a lack of emotion or ask lots of questions. They often ask when the person who has died will return as they expect them to do so. Young children may have disrupted sleep, show changes in behaviour and regression in development.

It is important to provide honest answers but avoid explanations that can be misunderstood, for example ‘they have gone to sleep’.

Primary School age children Children of this age begin to understand that death is permanent and irreversible. Not being given sufficient information can lead children to ‘fill in the gaps’ with their imagination. They can become anxious about their own and other’s safety.

At this age children need honest answers which can be built upon over time. They need opportunities to express their concerns and feelings to a trusted adult.

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Teenagers Teenagers have an adult understanding of death but may have their own strong beliefs. Bereaved young people often struggle to ask for support and can feel extremely isolated. Some young people may become withdrawn whilst others may increase their risk taking behaviours.

All infants, children, and young people Regardless of their age, bereaved children benefit from having a key person who they can trust, talk to, and be reassured by. It is important to give children age appropriate honest information following the death of a loved one and to include and involve them in the funeral, memorials, and any decision making. Maintaining a routine, including school attendance, and ‘normal’ boundaries is also helpful for grieving children.

Your child’s nursery, school, or college are able to offer support for them in their setting. Your child’s health visitor or school nurse is able to support you with any behavioural changes your child may experience whilst grieving.

Your key worker and other professionals can direct you to specialist services to support bereaved children locally if required.

For further information about children’s reactions to grief and how to support them, please visit the Child Bereavement UK website, www.childbereavementuk.org

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Who do I need to tell that my child has died?

Your child’s GP, school, or college should have been notified of your child’s death very quickly, but some families wish to contact them directly as well. There may be other professionals/services involved with your child and family, your key worker can support you in identifying and informing them.

There may be other places that have your child’s details such as banks and building societies, local groups, religious organisations, clubs, dentists, and opticians that you will need to inform at some point.

If you joined any baby or child groups, such as supermarket clubs or online clubs, you will need to tell them that you don’t want to receive any more information. Otherwise you may continue to be contacted with offers and information about your child’s expected progress. The Mailing Preference Service can help with this; you can register online at www.mpsonline.org.uk

What about my child benefit and other payments?

If you have received benefits for your child, either in payments or equipment, these will usually continue for some weeks after your child has died, but the timing differs for different types of benefits. It is up to you to contact the agencies that provide your benefits, and it is a good idea not to delay this or you may be overpaid and have to repay any overpayments.

This can be difficult to do, so it might be a task you ask someone to help you with.

Child benefit is paid for up to eight weeks after a child dies, but you will need to ensure that you have told the child benefit office that your child has died. You can do this either online through the www.direct.gov.uk website or by contacting the child benefit office on 030 0200 3100.

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What about my child’s social media pages?

You may wish to reconsider your privacy settings on social media if there are photos of your child on there, as these could be reused without your permission if they are publicly accessible.

If your child had their own social media accounts, you can either deactivate them, turn them to a ‘memorialised’ account or leave them as ‘live’ accounts. To change the accounts you will need to provide proof of your relationship and your child’s death certificate to the social media provider.

Facebook, Instagram and Twitter Access the Help Centre and search ‘deceased family member’. You have the option to memorialize or remove the account. You will need to upload a copy of the death certificate. www.facebook.com/help help.twitter.com help.instagram.com

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How do I obtain my child’s death certificate?

If your child’s death is being investigated by the Coroner, then your child’s doctor will not be able to issue the Medical Certificate of Cause of Death. In these circumstances, the Coroner’s Office will advise you when and how you can register your child’s death and obtain the death certificate.

Your child’s doctor may be able to give you the Medical Certificate of Cause of Death before you go home, but if they are unable to do this it may be necessary for you to return to the Bereavement Office at the hospital where your child died to collect it in a day or two. It is advisable to make an appointment to do this.

Royal Surrey Bereavement Office A Block, Headley Wing (near PALS) 01483 303361 Monday-Friday 9am-3pm

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How do I register my child’s death?

You will need to register your child’s death by making an appointment with the Register Office. If you have not already registered your baby’s birth you will also need to do this – there is a requirement to register the birth within 42 days of birth. It is up to you whether you choose to do both during one visit.

If you have been informed that the Medical Certificate of Cause of Death is complete, it will be sent directly to the Registrars. You must register your child’s death within five days of the death and take the certificate with you.

If your child’s death has been referred to the Coroner then there may be a delay in your being able to register their death. In these circumstances the Coroner’s Office will advise you on when and how to register your child’s death.

Once your child’s death has been registered you will be able to obtain a death certificate.

The Death Certificate The Registrar will give you: • A certificate for burial or cremation (also known as the ‘green form’). You will need to give this to the funeral director.

• There is a fee payable for each certificate and the Registrar will be able to advise you about this.

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Register Office for Surrey (Guildford Office) Artington House.

42 Portmouth Road, Guildford GU2 4DZ 030 0200 1002 To book an appointment online visit: www.surreycc.gov.uk/birth-death-and-ceremonies/register-offices/ leatherhead

Copyright © RNS Publications 2022

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How do I arrange my child’s funeral?

You can start to plan the funeral at any time but you can only hold it once you have the death certificate or appropriate form from the Coroner. If you have religious or other requirements that may affect the timing of your child’s funeral, please discuss these with hospital staff or your key worker as soon as possible. If the Coroner is involved they will alert them, and the Coroner will try to accommodate your wishes, though it may not be possible.

You may wish to discuss possible choices with your chosen funeral director, and take time to consider what would be the most meaningful for you and your family.

The costs of burials and cremations vary and there are other expenses that you may not have considered, so you should ask for a written estimate before finalising the arrangements.

The Children’s Funeral Fund for England can help to pay for some of the costs of a funeral for a child under 18.

It is not means-tested and can help pay for the: • Burial fees • Cremation fees, including the cost of a doctor’s certificate • Coffin, shroud, or casket If you are on a low income, you may also be eligible for a ‘Funeral Expenses Payment’, which your funeral director should be able to help you find more information about.

For more information visit www.gov.uk/child-funeral-costs

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What is the Child Death Review process?

It is important that there is a review of every child’s death to learn as much as possible. This review is designed to support you and other members of your family in understanding why your child died.

It will also try to prevent other children dying from the same cause.

There are some elements that take place for every child death, and some that may not be needed depending on the circumstances.

Sometimes, other reviews are also undertaken alongside the Child Death Review.

The Child Death Review process is split into four stages: • Immediate response - sharing information between relevant organisations about the circumstances of your child’s death, safeguarding and supporting bereaved families • Information gathering - this may be in the form of a multi-agency meeting and/or information sharing to have a full understanding of the circumstances of the child’s death, including the outcome of any relevant local investigations, and post mortem reports.

• Child Death Review Meeting—a multiagency meeting of professionals known to the child and family to undertake a local review to identify local learning and review the support available to the child’s family.

• Child Death Overview Panel—a regional anonymised review of the case to identify trends, themes, and learning for child deaths across a specific geographical region.

Your key worker will be able to tell you about what is happening in relation to your child. For more information about the Child Death Review Process please ask your key worker for a copy of the NHS England leaflet ‘When A Child Dies’.

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What support is there for me as a bereaved parent?

The death of a child is the worst experience that a parent can face.

There is no normal or right way to feel or behave, and most people experience a range of emotions. Many parents experience feelings of sadness and despair, guilt, numbness and emptiness, and even a sense of relief in certain circumstances. Parents and family members often grieve in different ways and process their grief at different rates.

Talking to family and friends about your child and your grief is often helpful, however many parents feel they need additional support.

Your key worker or GP are able to signpost you to local bereavement support services. Alternatively, there are a number of local and national organisations listed at the end of this booklet who can support you.

Returning to work Returning to employment might not be something you can consider at this stage. From April 2020 in the UK employed parents are entitled to two weeks paid bereavement leave to be taken within 56 weeks of the date of death of the child. Your employer may also make their own decision about compassionate leave you may be entitled to.

You can self-certify sickness absence for the first week, and then you will need to visit your GP for a ‘fit note’ to continue to take sick leave.

Try to contact your work, or ask someone else to, if you need more information about your employer’s position and your right to paid leave.

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How can other family members and friends support me?

Bereaved parents often find it difficult to talk about their grief and to ask for help or support. You can share this page with family and friends to guide them on how they may be able to support you.

What do I say?

Often people are worried about saying the right or wrong thing to a bereaved parent. Acknowledging their bereavement and saying “I am sorry” as soon as possible, or saying “I don’t know what to say” is better than avoiding the subject completely.

Be guided by the individual, some parents wish to talk about their child, others may prefer not to. Use the child’s name and don’t be afraid to share any memories you may have. Don’t assume to know how they feel or what they need.

Be patient with them. Bereaved parents experience a whole range of emotions and it may sometimes feel like you can’t say or do anything right. Knowing you are still there to support them when they are ready, whether that is in weeks, months, or years is important.

What can I do?

Ask the parent what they need and be honest with them and yourself about what support you can offer.

Practical support, such as preparing a meal, offering lifts to school or appointments, and finding information can be very helpful for some families. Emotional support such as, listening, giving a hug and, remembering special days and anniversaries is just as important.

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Local and national bereavement support These services have been listed below in alphabetical order, but all of these organisations are happy to speak with you and see how they may be able to help support you, your family, and friends.

Name

Service offered

Contact Information

Care for the Family

Bereavement support for Christian parents and siblings

www.careforthefamily.org.uk/ family-life/bereavement-support

Catholic Children’s Society

Bereavement support for Christian parents and siblings

www.cathchild.org.uk/ rainbows-bereavment-supportprogramme

Child Bereavement UK

Supporting parents following the death of their child and bereaved children

080 002 888 40 www.childbereavementuk.org

Child Death Helpline

A helpline that offers support to anyone affected by the death of a child of any age, under any circumstances, however recent or long ago

080 0282 986 080 0800 6019 www.childdeathhelpline.org.uk

Children of Jannah

Support for Muslim families when a child has died

www.childrenofjannah.com

Cruse Bereavement Care

Local group for people National: 080 8808 1677 Sutton: 07904 056 123 aged 18 and over living in Sutton and a sutton@cruse.org.uk National Helpline 21

Name

Service offered

Contact Information

The Good Grief Trust

Practical and emotional support for anyone who has been bereaved

www.thegoodgrieftrust.org

Grief Encounter

Supporting bereaved children and young people

080 8802 0111 www.griefencounter.org.uk

Jewish Bereavement Counselling Service

Dedicated bereavement counselling for the Jewish community

www.jbcs.org.uk

Jigsaw4U

Support for children 5-18 years living in Sutton, Merton and the surrounding areas

020 8687 1384 www.jigsaw4u.org.uk

Lullaby Trust

Confidential bereavement support to anyone affected by the sudden and unexpected death of a baby or young child

080 8802 6868 www.lullabytrust.org.uk/ bereavement-support

Sands (Stillbirth and Neonatal Death Charity)

Support group for bereaved parents based in Streatham and a National Helpline

South West London Sands 080 8164 3332 www.sands.org.uk

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Name

Service offered

Contact Information

SLOW (Surviving the loss of your world)

Support group for bereaved parents based in Streatham

South London Groups 07532 423 674 info@slowgroup.co.uk www.slowgroup.co.uk

SOBS (Survivors of Bereavement by Suicide)

Support group for over 18’s bereaved by suicide based in Cheam

07851 420526 www.uksobs.org

Sutton Uplift (NHS)

For people aged 18 and over living in Sutton or with a Sutton GP. Patients able to self refer

080 0032 1411 www.suttonuplift.co.uk

The Compassionate Friends

Support group for bereaved parents based in Sutton with a National Helpline

034 5123 2304 www.tcf.org.uk

Twins Trust

Support for parents www.twinstrust.org/ bereavement.html or grandparents who have lost babies or children that are twins, triplets or more

Winston’s Wish

Support for children and young people after the death of a sibling or parent

0808 802 0021 www.winstonswish.org

Reference: Royal Surrey County Hospital Information for those who are bereaved when a baby or child dies booklet.

Publication date: February 2022 Review date: February 2024

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Published by: RNS Publications © Tel: 01253 832400 R0