Warwick Hospital - Information for Parents following the death of their child

Information for Parents following the death of their Child

We would like to offer you and your family our deepest sympathy following the death of your 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 Hospital at any time you feel you need more information. Below you will see the names of the staff at the hospital who will be your main contacts.

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

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

Your family’s single point of contact is: ……………………………………………………..........................................…………..........………..

The telephone number for the ward / department is: ……………………………………………………..........................................…………..........………..

Bereavement Service Contact number: ……………………………………………………..........................................…………..........………..

1

Contents What happens now?.................................................................Page 3 Can I see my child?..................................................................Page 3 I would like to create some lasting memories of my child, is this possible?........................................................................Page 4 Can I donate my child’s organs?..............................................Page 4 I would like my child to be seen by a faith leader or someone who can give spiritual care, can this be arranged?..Page 5 Can I take my child’s body home?............................................Page 5 What does my family’s key worker do?....................................Page 6 Why has my child’s death been referred to the Coroner?........Page 6 Why does my child have to have a post mortem examination and what does this mean?...................................Page 7 Why were the police and children’s social services called when my child died?.................................................................Page 8 How do I obtain my child’s death certificate?...........................Page 8 How do I register my child’s death?..........................................Page 9 The Death Certificate...............................................................Page 9 What is the Child Death Review process?...............................Page 11 How do I arrange my child’s funeral?.......................................Page 12 How do I tell my child’s brothers and sisters, and what support is there for them?........................................................Page 13 Who do I need to tell that my child has died?...........................Page 15 What about my child benefit and other payments?..................Page 15 What about my child’s social media pages?.............................Page 16 What support is there for me as a bereaved parent?...............Page 16 Returning to work.....................................................................Page 17 How can other family members and friends support me?........Page 17 Where can I find further support...............................................Page 18 Space to write notes.................................................................Page 21 2

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.

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 sit 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 usually 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 in later. Otherwise the Trust will make sure a toy and blanket are supplied if you would like us to.

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 your Key Worker or Single Point of Contact who will be able to assist with arranging this at a time convenient to you.

3

I would 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 cannot be done.

Sometimes parents are uncertain whether they would like to have these at that 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.

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.

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.

4

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

Our Chaplaincy Service is here to support children and families of all faiths and none. The Chaplaincy Teams are 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 Chaplaincy Team if you would like to see them.

We have a Chapel / Multi-faith Room at the hospital which is available to anyone for quiet reflection, personal prayer, or a quiet place where you can just be.

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 questions, please feel free to discuss them with the staff at the hospital or the funeral director of your choice.

5

What does my family’s key worker do?

Every family whose child (under 18 years old) dies should have a key worker and 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 you child died and you will find the contact details at the front of this booklet.

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 a 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 based on what medical information is available.

• 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 if required.

6

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.

Usually your child will 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 your child is transferred.

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

They can be helpful 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 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, you may be able to see your child again after the post mortem examination and before the funeral service.

7

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 circumstances of the child’s death, on 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.

How do I obtain my child’s death certificate?

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

If your child died following a known illness 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 at that time the Bereavement Office will contact you when it is available and arrange for it to be delivered to the Registration Office on your behalf.

8

How do I register my child’s death?

You will need to register your child’s death by making an appointment with the Registrar’s Office. Your key worker or the bereavement officer will be able to book the appointment for you. 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 register the birth and death at one appointment.

If you have been issued with a Medical Certificate of Cause of Death then you must register your child’s death within five days of the death.

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 of 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.

9

Warwickshire Register Offices To book an appointment visit www.warwickshire.gov.uk/deathregistration or call 0300 555 0255.

Someone can book the appointment on your behalf but you will need to register your child’s death.

• Warwick Shire Hall, Warwick, CV34 4RL • Stratford upon Avon 12 Henley Street, Stratford upon Avon, CV37 6PZ • Rugby 5 Bloxam Place, Rugby, CV21 3DS • Nuneaton Riversley Park, Coton Road, Nuneaton, CV11 5HA

10

What is the Child Death Review process?

The Child Death Review process is followed for every child who dies aged 18 years and under. The review is in order to learn as much as possible about what happened and to understand why your child died.

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

The review is designed to support you and other members of your family with a better understanding of what led to your child’s death.

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 the family.

• Information gathering – this will be in the form of a multi-agency meeting and information sharing to have a full understanding of 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 from 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’

11

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.

If you would like some help to think about the funeral, our Chaplains are happy to support you in making the right choices. Alternatively, 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 cost of burial and cremations can vary and there are other expenses that you may not have considered. Most funeral directors will not apply any charges for their services for a child’s funeral, but there will still be other fees that must be paid. You should ask for a written estimate before finalising arrangements.

The Children’s Funeral Fund for England can help 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 tell you about.

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

12

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 a death.

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.

13

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 a 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 reaction to grief and how to support them, please visit the Child Bereavement UK website – www.childbereavementuk.org.

14

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 your in identifying and informing them.

There may be other places that have you child’s details such as banks and building societies, local groups, religious organisations, clubs, dentist, 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 with.

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

15

What about my child’s social media pages?

You may wish to reconsider you privacy setting on social medial if there are photos of your child on there, as they 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 memorialise 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

What support is there for me as a bereaved parent?

The death of a child is probably 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.

Please do not hesitate to contact the hospital as we can help you find addition support should you need it. There are a number of local and national bereavement services that can offer help. You may ask your Key Worker about them and they will sign post you to the right one for you.

16

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 you 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.

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 and 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 memories you have. Don’t assume to know how they feel and 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.

17

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.

Where can I find further support?

The Child Bereavement Charity Provides support for bereaved children and their family.

Tel: 0800 02 888 40 www.childbereavementuk.org Childhood Bereavement Network For children and young people.

Tel: 020 7843 6309 Email: cbn@ncb.org.uk www.childhoodbereavementnetwork.org.uk The Child Death Helpline For anyone affected by the death of a child. Your call will be answered by a bereaved parent. An interpreting service is available.

Free phone (for landlines): 0800 282 986 Free phone (for mobiles): 0808 800 6019 Every evening 7pm-10pm Monday,Thursday, Friday 10am - 1pm Tuesday and Wednesday 10am-4pm www.childdeathhelpline.org.uk

18

The Compassionate Friends For parents who have suffered the loss of a child, of any age, in any way. The helpline will be answered by a bereaved parent.

Tel: 0845 123 2304 (everyday, 10am-4pm, and 7pm-10am) www.tcf.org.uk Cruse Bereavement Care Provides counselling, support and advice to bereaved people.

Tel: 0808 808 1677 Email: helpline@cruse.org.uk www.cruse.org.uk The Lullaby Trust Help line:0808 802 6868 Monday - Friday 10am-5pm Weekends and public holidays 6pm-10pm Information & advice: 0808 802 6869 www.lullabytrust.org.uk Meningitis now For the families of those bereaved by meningitis & meningococcal septicemia.

24 hour helpline: 0808 8010388. www.meningitisnow.org RoadPeace – national charity for road traffic victims For those bereaved by road death.

Helpline: 0800 160 1069 Email: helpline@roadpeace.org www.roadpeace.org

19

Twins Trust Bereavement Service Support all parents and carers who have lost from a multiple birth, whether it was during pregnancy, at birth or shortly afterwards.

Helpline 0800 138 0509 www.twinstrust.org/bereavement.html The Samaritans Provides confidential emotional support, 24 hours a day, for people who are experiencing feelings of distress or despair.

Tel: 116 123 Email: jo@samaritans.org www.samaritans.org Winston’s Wish Provides support and guidance to bereaved children, young people and their families.

Tel: 08088 020 021 Email: info@winstonswish.org.uk www.winstonswish.org.uk

20

Published by RNS Publications © Tel: 01253 832400 R0