# data[].attributes.body
We understand that baby loss is a sensitive subject and for a very long time has been a taboo topic in the Black community but we want you to know you are not alone...

# data[].attributes.body
A resource dedicated to supporting families through baby loss and beyond.

# data[].attributes.attachment_link.readable_text
Our flagship service is our Ellie's Gift app, a lovingly crafted resource dedicated to supporting families through baby loss and beyond. Developed in memory of Lucy's daughter, Ellie, this app is designed to provide the same hypnobirthing-based techniques and birth education that helped Lucy stay calm and relaxed during Ellie's birth.

This app supports individuals through baby loss by offering practical assistance, mental health support, and educational resources. It includes videos, MP3 tracks, and guides to help families prepare and cope, along with relaxation techniques and downloadable tools like birth plans and hospital checklists.

Download the app now on the play store to access immediate support.

# data[].attributes.attachment_link.title
Ellie's Gift App | Baby Loss Support Anytime, Anywhere - Ellie's Gift App

# data[].attributes.attachment_link.description
The Ellie's Gift app offers 24/7 support for families experiencing baby loss. Access tools, resources, and relaxation techniques to help navigate grief, healing, and recovery with guidance at your fingertips.

# data[].attributes.attachment_link.title
When your baby has died leaflet, care following a late miscarriage or stillbirth

# data[].attributes.attachment_link.title
When your baby has died leaflet, termination of pregnancy for fetal abnormality

# data[].attributes.body
Ocean Birth Trauma and Loss service

The Ocean team are a small team of specialist Midwives and psychological therapists employed by the NHS who offer support to women/birthing people.

You can self refer using the form on this Padlet.

# data[].attributes.attachment_link.readable_text
The Butterflies Support Group is for anyone who has been affected by the loss of a baby.

The aim of the group is to support parents, families and friends through their grief by providing a listening ear, friendship, emotional and practical support and a safe and welcoming environment to share experiences.

Refreshments will be provided from time to time there may be visiting speakers and or other activities. You are welcome to come to the group just once, every month or whenever is helpful to you. There is no need to book although having an idea of numbers is useful.

The group will be led by RUH Lead Chaplain Reverend Narinder Tegally and Bereavement Support Midwife Bex Walsh.

The group takes place on the third Wednesday of every month from 9.30am to 11.00am in the Courtyard Room at the All Saints Centre in Bath.

If you have any questions about the group please call Narinder on 01225 824039 or
Bex on 01225 826886.

Venue:

All Saints Centre
Courtyard Room
High Street
Weston
Bath BA1 4BX

# data[].attributes.attachment_link.authors[].name
Information Services Department, Royal United Hospital

# data[].attributes.attachment_link.title
Royal United Hospitals Bath NHS Foundation Trust

# data[].attributes.attachment_link.description
The Butterflies Support Group is for anyone who has been affected by the loss of a baby. The aim of the group is to support parents, families and friends through their grief by providing a listening ear, friendship, emotional and practical support and a safe and welcoming environment to share experiences.

# data[].attributes.body
Bath Sands is part of Sands, a charity that operates throughout the UK, supporting anyone affected by pregnancy or baby loss. Sands also works to improve the care bereaved parents receive, supports research and campaigns to improve maternity safety and save babies' lives.

bath@sandsvolunteer.org.uk

# data[].attributes.body
Ocean Birth Trauma and Loss service

The Ocean team are a small team of specialist Midwives and psychological therapists employed by the NHS who offer support to women/birthing people.

You can self refer using the form on this Padlet.

# data[].attributes.headline
Sands Swindon: To support anyone affected by the death of a baby.

# data[].attributes.subject
Sands Swindon: To support anyone affected by the death of a baby.

# data[].attributes.body
Email: swindon@sandsvolunteer.org.uk

Also www.instagram.com/swindonsands

# data[].attributes.attachment_link.description
Swindon Sands Community, Swindon. 1,024 likes · 13 talking about this. To support anyone affected by the death of a baby.

# data[].attributes.attachment_link.title
For babies born premature or sick | Bliss

# data[].attributes.attachment_link.description
Our vision is that every baby born premature or sick in the UK has the best chance of survival and quality of life.

# data[].attributes.body
Providing hope for grieving families

# data[].attributes.headline
The Care of Next Infant (CONI) programme supports families before and after the birth of their new baby

# data[].attributes.subject
The Care of Next Infant (CONI) programme supports families before and after the birth of their new baby

# data[].attributes.body
Parents who have experienced a sudden and unexpected death of a baby often feel anxious when they have another baby. Working with local public healthcare providers we facilitate a service for bereaved parents.

# data[].attributes.attachment_link.description
The Care of Next Infant (CONI) programme supports families before and after the birth of their new baby.

# data[].attributes.attachment_link.readable_text
Established in 2012, and officially becoming a charity in 2013, the Mariposa Trust has grown to become a forerunner in support, services and as campaigner for change in the UK and globally. In 2014 the charity launched 'Mariposa International', a 501(c)3 not-for-profit in the US.
The aims of the Mariposa Trust remain as follows:

Creating global services of remembrance that allow people to grieve in a supportive environment;

Creating a comprehensive support structure, allowing people to access the support they need;

Improving the care and support of anyone going through loss;

Changing the taboo nature of baby loss, allowing for more open discussion, acceptance and support.

The Mariposa Trust

The Mariposa Trust has grown in the depth and breadth of its work, and now has six main divisions. The primary division is Saying Goodbye, which provides a global portfolio of support, as well as services of remembrance at Cathedrals around the world. In addition, there are five further support divisions: GrowingYou, Holding Hope, Waiting for You, Love in Every Tear and So Cherished.

The Trust is a Charity (1151108) and Company limited by Guarantee (8241785). It oversees and coordinates all UK and International operations and initiatives.

Saying Goodbye

Saying Goodbye is the primary division of the Mariposa Trust and provides support for anyone who is affected by baby loss, at any stage of pregnancy, at birth or in infancy, whether the loss be recent or historic. In addition, Saying Goodbye also provides support for people who are grieving never having children, and is at the forefront of campaigning for change, as a stakeholder with the Department of Health.

In addition to supporting tens of thousands of people each week, it runs the 'Saying Goodbye' services of remembrance at Cathedrals, Minsters and Abbey's globally.

The Charity Divisions

The charity has five further divisions,

GrowingYou offers support to anyone who is pregnant or considering pregnancy following loss.

Holding Hope provides support for people through are considering or going through fertility treatment.

Waiting for You provides support for people journeying through adoption.

Love in Every Tear supports people supporting others through loss.

So Cherished supports families who have received a terminal or life altering diagnosis over over their child.

Global... Baby loss knows no bounds, and can affect anyone, anywhere!

Baby loss is a global issue with around 30 million miscarriages each year, 2.6 million still births and 5.495 million neo-natal and early years losses. The Mariposa Trust is leading the way in providing better support for anyone going through loss, and in increasing awareness of the size and scale of the issue.

# data[].attributes.attachment_link.title
The Mariposa Trust provides services and support for people who have lost children at any stage of pregnancy, at birth, or in infancy, be it last week or 60-years ago.

# data[].attributes.attachment_link.description
The Mariposa Trust - Support for those who have lost children during pregnancy, at birth, or in infancy.

# data[].attributes.body
Supporting families during and after the loss of a twin, triplet or multiples.

# data[].attributes.headline
Footprints Baby Loss - Twins and Triplets support

# data[].attributes.subject
Footprints Baby Loss - Twins and Triplets support

# data[].attributes.body
Footprints Baby Loss provides vital support to parents and families who experience the death of one or more of their twins or triplets before, during or after birth

# data[].attributes.attachment_link.description
Footprints Baby Loss provides vital support to parents and families who experience the death of one or more of their twins or triplets.

# data[].attributes.attachment_link.description
We’re here to provide information and support for anyone who has experienced a miscarriage, stillbirth, neonatal death or termination for medical reasons.

# data[].attributes.headline
Tommy's Midwives Helpline for Black and Black Mixed-Heritage women

# data[].attributes.subject
Tommy's Midwives Helpline for Black and Black Mixed-Heritage women

# data[].attributes.body
Black women are at higher risks of complications during pregnancy, which is why we are offering extra support.

# data[].attributes.attachment_link.title
Social services and your family | Family Lives

# data[].attributes.attachment_link.description
Social Services support families and safeguard children who may be at risk of harm, whether from family members or others. Read more about social services support, section 47 enquiries and what to expect.

# data[].attributes.attachment_link.description
We help children, young people, parents, and families to rebuild their lives when a child grieves or when a child dies.

# data[].attributes.attachment_link.readable_text
Cookies on GOV.UK

We use some essential cookies to make this website work.

We'd like to set additional cookies to understand how you use GOV.UK, remember your settings and improve government services.

We also use cookies set by other sites to help us deliver content from their services.

You have accepted additional cookies. You can change your cookie settings at any time.

You have rejected additional cookies. You can change your cookie settings at any time.

Accept additional cookies Reject additional cookies View cookies

Skip to main content

If your pregnancy ends before 24 weeks, you can get a certificate in memory of your baby. It's free to get a certificate.

You do not need to request a certificate if you prefer not to. It's optional.

The certificate is not a legal document - for example you cannot use it to claim benefits. The certificate will not be added to your GP record.

If your pregnancy ends from 24 weeks onwards, you need to register a stillbirth instead.

Before you start

You'll need:

your NHS number or postcode registered with your GP

the mobile phone number or email address registered with your GP

permission from the other parent and their email address, if you want their name on the certificate

You can find out your NHS number on the NHS website.

Request a certificate

You can ask for a certificate if all these apply:

you've lost a baby before the 24th week of pregnancy

you're one of the baby's parents or surrogate

you're at least 16 years old

your pregnancy ended on or after 1 September 2018

you lived in England when you lost your baby

you live in England

If you've lost more than one pregnancy, you can apply separately to get a certificate for each baby loss.

Your certificate should arrive in the post within 14 days. If you do not receive it, you can request another certificate.

Get help to request a certificate

If you want your certificate in a different format or cannot request the certificate online, email or call the helpline.

# data[].attributes.attachment_link.description
If your pregnancy ends before 24 weeks, you can get a free certificate in memory of your baby.

# data[].attributes.body
Learning more about the grieving process can help you understand what you're going through.

# data[].attributes.attachment_link.title
Understanding grief - Cruse Bereavement Support

# data[].attributes.attachment_link.description
Learning about the grieving process can help you understand what you’re going through. Here, we can help you with understanding grief.

# data[].attributes.attachment_link.readable_text
Tommy's is a national charity that works tirelessly to reduce the UK's unacceptable rates of miscarriage, stillbirth and premature birth, and to break the silence around pregnancy and baby loss.

Tommy's funds pioneering medical research to discover the causes of baby loss and helps women at every stage of their pregnancy journeys, supporting them and their partners with expert information and care.

We provide a supportive community and safe space for every family who has lost a baby during pregnancy or birth, including those who have experienced TFMR, and campaign to reduce the ongoing stigma and isolation families face.

Tommy's is working to make pregnancy safer for all and ensure that excellent maternity care is available for every family, every baby, everywhere.

For more information about Tommy's, please visit www.tommys.org or follow us on social media @tommys. To speak to a Tommy's midwife, email midwife@tommys.org.

# data[].attributes.attachment_link.title
Termination For Medical Reasons (TFMR) | Petals Charity

# data[].attributes.attachment_link.description
Tommy's is a national charity that works tirelessly to reduce the UK's unacceptable rates of miscarriage, stillbirth and premature birth, and to break the silence around pregnancy and baby loss. Tommy's funds pioneering medical research to discover the causes of baby loss and helps women at every stage of their pregnancy journeys, supporting them and their partners with expert information and care.

# data[].attributes.attachment_link.readable_text
Your partner, friend or relative, or someone you are a carer for, is coming to BPAS because she is considering, or has decided to end her pregnancy. Each woman approaches the experience in her own way. For some the decision is quite straightforward, for others this may not be the case.

Every year, thousands of women and couples face unplanned and possibly unwanted pregnancy. Most women are helped through this experience by someone they trust.

We know that providing reassurance and support to someone you care for can be difficult, particularly if you are both experiencing a situation that you may find stressful.

This page aims to help you understand the consultation and treatment process and answer the most frequently asked questions and concerns that partners have.

The final decision to end or continue the pregnancy is made by the woman herself. You may feel a little helpless and excluded during this process. You might feel more involved by asking your partner or loved one how she would like you to help and reassure her.

We need to make sure that the treatment we provide is legal and safe, so we need to perform certain checks and processes before treatment. There are a variety of people to see and the person you are supporting can rejoin you in the waiting room in between each stage of the consultation, medical assessment and treatment process.

We ask for your patience while we carry out the checks and medical tests needed to ensure the wellbeing of your loved one or friend.

Consultation

Medical assessment

Treatment

Afterwards

Some women may experience a sense of loss or relief or confusion after an abortion. Partners, family members and friends are best placed to see how a woman is feeling and to give her any support and reassurance that she may need or ask for.

We have more detailed information to help you support your partner, daughter or friend. Please select the most appropriate title below:
Partner - abortion and men Who to bring with you

# data[].attributes.attachment_link.description
Your partner, friend or relative, or someone you are a carer for, is coming to BPAS because she is considering, or has decided to end her pregnancy. Each woman approaches the experience in her own way. For some the decision is quite straightforward, for others this may not be the case.

# data[].attributes.body
Supporting families after termination for medical reasons (TFMR) baby loss

# data[].attributes.attachment_link.readable_text
"A 'decision' made with the most love and the biggest heartbreak"

TFMR Mamas was created by Emma Belle, podcast host and Mentor, after sadly losing her baby girl, Willow, to TFMR due to Edwards Syndrome in October 2020. This loss shattered her heart. After battling with infertility and finally being pregnant after 5 rounds of fertility treatment, this simply wasn't a position she ever dreamed her and her husband would ever be in.

​

Emma believes that humans are not built to get through their hardest days alone or in isolation and that we heal in community. This is why she created this safe supportive space. TFMR Mamas provides for TFMR Mamas & Private facebook groups for TFMR Mamas, LGBTQ+, Papas and Grandparents. The TFMR Mamas Hub membership will also launch SOON - Free monthly support groups and paid weekly support group options CLICK HERE FOR MORE DETAILS

Emma Belle - Creator of TFMRMamas and Mama to Baby Willow, October 2020

TFMR Mamas offers support groups and resources to help this community feel supported and not alone.

If you are a TFMR Mama, Papa, LGBTQ+ Parent or Grandparent, I am so deeply sorry for your loss, this is truly something no parent or grandparent should have to go through, and this is not something you have to face alone.

Please have a look at the support groups page to find something that works for you, you don't have to do this alone.

Emma Belle x

# data[].attributes.attachment_link.description
"A 'decision' made with the most love and the biggest heartbreak" TFMR Mamas was created by Emma Belle, podcast host and Mentor, after sadly losing her baby girl, Willow, to TFMR due to Edwards Syndrome in October 2020. This loss shattered her heart.

# data[].attributes.body
The Willow Tree Centre provides a free confidential and unbiased one-to-one listening and support service for women (and their partners) experiencing difficulties related to unplanned pregnancy and after all types of pregnancy loss

# data[].attributes.attachment_link.description
willow tree centre unplanned pregnancy abortion post abortion miscarriage stillbirth ectopic pregnancy help support Bristol Yate Bath South Gloucestershire listening counselling The Willow Tree Centre Thewillowtreecentre thewillowtreecentre.org.uk thewillowtreecentre.org.uk

# data[].attributes.attachment_link.readable_text
If someone close to you is considering abortion, there are many ways to support.

You may be unsure of exactly how to help, but just being there can make a big difference.

It may be a stressful time for you too, and it can help to know what’s involved before, during and after an abortion, so you know what to expect. Contact our advice line on 0345 300 8090 if you’d like to talk things through, or get more information for yourself.

Contact us today for a confidential chat

Supporting someone considering an abortion

Whether you’re a partner, family member or friend, you can be there to listen, support and offer reassurance.

The final decision to end or continue with a pregnancy lies with the pregnant person themselves. But many pregnant people are helped through the experience by having someone close to them, to talk to and share their thoughts and feelings with.

You can also offer practical support, such as going through the abortion information together, reminding them about questions they might want to ask, and supporting them with aftercare.

Learn more about aftercare

Five Top Tips

Create space and don’t be judgemental

Have open and honest conversations

Try not to offer advice that hasn’t been asked for

Offer to travel to an appointment with them

Respect their privacy

Create space and don’t be judgemental

Sharing an abortion experience can be nerve-wracking. If there is someone in your life who feels comfortable enough to talk to you about their experience, allow them to share their thoughts and feelings freely.

Have open and honest conversations

Open and honest conversations about abortion help women and girls feel informed, educated and supported when it comes to making their own choices about their own bodies. Let your friend or relative share their hopes, fears or worries with you.

Try not to offer advice that hasn’t been asked for

Abortion is a very individual experience. Some people feel fine whereas others may feel confusion or sadness. Don't try to tell the person who is sharing their experience what to think, do, feel or how to act. It’s hard to understand what they're going through and what works for one person might not work for someone else

Offer to travel to an appointment with them

Some people may prefer to attend appointments by themselves but offering to travel with your friend or relative shows that you support their choices and lets them know that they aren’t alone, even if they decline.

Respect their privacy

Abortion is not something to be ashamed of, but it is important to respect people’s privacy and keep the information they have told you to yourself. It is up to them when, how, and if they choose to talk about their experience.

Attending an appointment with someone

Our clients can attend their appointment with one adult; however they will need to wait in the waiting area and they will need to bring and wear a clean face covering on entering the premises.

We offer two different types of abortion – medical and surgical. The type your partner, relative or friend has will depend on their gestation (how many weeks pregnant they are), medical history and personal choice.

Some people experience different emotions afterwards, such as relief or sadness. As someone close to them, you can talk to your loved one about how they are feeling and offer emotional support.

Looking for more information about abortion services?

You’ll find answers to the questions people ask most about abortions here. If you can’t find out the information you need, please call us on 0345 300 8090.

Making the right choice for you

Before deciding whether to go ahead with an abortion, it can help to be as informed as possible. We’ve collated some information about abortion we hope you’ll find useful here.

What to expect

We want you to feel as comfortable and relaxed as possible when you come for an abortion. So our team will be there to support you at every stage.

Read more

Abortion and your rights

In England, Scotland and Wales, you can legally have an abortion up to 23 weeks and 6 days. If you live in Northern Ireland, Ireland or the Isle of Man, you can also travel here for an abortion.

Read more

A guide to costs

More than 95% of our clients have their abortion funded by the NHS. You can also pay to have one privately if you prefer, or if you’re not eligible for NHS funding.

Read more

# data[].attributes.attachment_link.title
MSI Reproductive Choices advice for partners

# data[].attributes.attachment_link.description
If you’re a partner, friend or family member of someone having an abortion, here’s some advice on how you can support them.

# data[].attributes.body
This resource padlet has been put together by a team of MNVP Volunteers.
It is aimed at parents/to-be but may also be of use to midwives, maternity healthcare workers, birth workers and anyone else working within maternity services or Early Years settings.  Contact:  chaya.tagore@nhs.net  All paid for services must have their costs and prices clearly stated on their websites if included on this padlet.

​While we make every effort to keep these padlets up to date, we make no warranties or representations that the information will be:

current

accurate

secure

complete

free from bugs or viruses

As an MNVP, we are not liable for any loss or damage that may come from using these padlets. We are unable to endorse the information held on third party websites, it is for information only.

www.bswmaternityvoices.org.uk

# data[].attributes.body
Elsie's Moon – supporting families when pregnancy doesn't go to plan.

# data[].attributes.attachment_link.keywords[]
baby loss
charity 
neo natal 
pregnancy 
pregnancy loss
baby loss 
ivf
support
family
miscarriage
grief

# data[].attributes.attachment_link.description
Elsie's Moon aims to support families when pregnancy doesn't follow the plan

# data[].attributes.attachment_link.provider_name
Bath & North East Somerset, Swindon and Wiltshire (BSW) Maternity Voices Partnership Plus

# data[].attributes.attachment_link.readable_text
​While we make every effort to keep these padlets up to date, we make no warranties or representations that the information will be:

As an MVP, we are not liable for any loss or damage that may come from using these padlets. We are unable to endorse the information held on third party websites, it is for information only.

# data[].attributes.attachment_link.title
Resources - Bath North East Somerset, Swindon and Wiltshire Maternity Voices Partnership Plus

# data[].attributes.attachment_link.description
​While we make every effort to keep these padlets up to date, we make no warranties or representations that the information will be: As an MVP, we are not liable for any loss or damage that may come from using these padlets.

# data[].attributes.headline
Monthly support group in Midsomer Norton (BaNES) Fridays, 7pm til 8.30pm 

# data[].attributes.subject
Monthly support group in Midsomer Norton (BaNES) Fridays, 7pm til 8.30pm 

# data[].attributes.body
Email Chantelle: support@hearttalks.org.uk for further information

# data[].attributes.attachment_link.description
Providing Hope ⚘Empowering Voices for Bereaved Families following Babyloss
BANES

# data[].attributes.headline
Willow's Rainbow Box - for those who are pregnant again following a loss

# data[].attributes.subject
Willow's Rainbow Box - for those who are pregnant again following a loss

# data[].attributes.body
Comfort boxes for those who are pregnant again after a baby loss. These are to help reduce anxiety and to promote positive mental health and well-being following a loss through miscarriage, stillbirth or neonatal death.

# data[].attributes.body
Miscarriage can be a very distressing experience for a couple. Your partner has the physical trauma to deal with, but you have also suffered a loss that you may find painful.

# data[].attributes.body
Please print, laminate and display where you can so that more parents are aware of the support that is available.

# data[].attributes.attachment_link.title
Padlet_Posters_BabyLoss QR code July 2025

# data[].attributes.body
If you’ve been affected by miscarriage, molar pregnancy or ectopic pregnancy, we hope this website will provide the information and support that you’re looking for.

# data[].attributes.attachment_link.readable_text
After thirty years of service our very first National Director, Ruth Bender Atik is retiring and we are recruiting for a new CEO. Our next Chief Executive will have the full support of the trustees to develop the strategy that will take the Miscarriage Association through the next chapter of its journey, based on a [...]
Continue reading "

We are so thankful to everyone who contributes to Baby Loss Awareness Week. Sharing stories, raising funds and getting involved on social media - it all helps us to spread the word and raise awareness of the impact of miscarriage, ectopic and molar pregnancy. Crucially, you help us all create and maintain this special opportunity [...]
Continue reading "

The Royal College of Obstetricians and Gynaecologists (RCOG) has updated its guidance for doctors on caring for people with recurrent miscarriage. They have also published a patient information leaflet. What is new? There is a change in the definition of recurrent miscarriage more consideration of the occasions where someone might be offered tests after two [...]
Continue reading "

# data[].attributes.attachment_link.title
The Miscarriage Association:Pregnancy Loss Information & Support

# data[].attributes.attachment_link.description
Learn about the Miscarriage Association, how to cope, and support those experiencing pregnancy loss. Access vital resources and information.

# data[].attributes.headline
Care for families who experience a neonatal death shortly after birth

# data[].attributes.subject
Care for families who experience a neonatal death shortly after birth

# data[].attributes.headline
Care for families experiencing late miscarriage 

# data[].attributes.subject
Care for families experiencing late miscarriage 

# data[].attributes.headline
Care for families experiencing termination of pregnancy for medical reasons

# data[].attributes.subject
Care for families experiencing termination of pregnancy for medical reasons

# data[].attributes.headline
Care for families experiencing stillbirth

# data[].attributes.subject
Care for families experiencing stillbirth

# data[].attributes.headline
A football team for men affected by child loss

# data[].attributes.subject
A football team for men affected by child loss

# data[].attributes.body
Call: 07545 374946 or email sufcsalisbury@gmail.com

# data[].attributes.headline
A football team for men affected by child loss

# data[].attributes.subject
A football team for men affected by child loss

# data[].attributes.body
Call 07545 374946, or email sufcsalisbury@gmail.com

# data[].attributes.headline
This page aims to offer parents some helpful resources to begin conversations with siblings of all ages.

# data[].attributes.subject
This page aims to offer parents some helpful resources to begin conversations with siblings of all ages.

# data[].attributes.attachment_link.provider_name
Sands - Saving babies' lives. Supporting bereaved families.

# data[].attributes.attachment_link.readable_text
When a child is bereaved we cannot and should not take away their grief. By helping them to explore it and share it, we can help them live through it and beyond.

In the UK 4,500 babies die every year. This means many families need to explain to siblings of all ages that their baby brother or sister will not come home. Young children may not understand the concept of death yet, but the grief experienced by parents and other relatives as they adjust to a baby's death will affect their practical and emotional lives.

This page aims to offer parents some helpful resources to begin conversations with siblings of all ages, as well a suggest activities for children to remember their baby brother or sister and express how they feel.

Resources for teachers and schools are included to help support siblings of babies who have died in school and other settings.

# data[].attributes.attachment_link.title
Support for siblings | Sands - Saving babies' lives. Supporting bereaved families.

# data[].attributes.body
Ocean Birth Trauma and Loss service

The Ocean team are a small team of specialist Midwives and psychological therapists employed by the NHS who offer support to women/birthing people.

You can self refer using the form on this Padlet.

# data[].attributes.headline
Wiltshire Treehouse support children & young people who have been affected by the death of someone important to them. 

# data[].attributes.subject
Wiltshire Treehouse support children & young people who have been affected by the death of someone important to them. 

# data[].attributes.attachment_link.title
Wiltshire Treehouse | Supporting Children & Young People Through Grief

# data[].attributes.attachment_link.description
Wiltshire Treehouse is a charity supporting bereaved children and young people in Swindon & Wiltshire. We provide telephone advice, free creative group work, and specialist training to help them understand their grief.

# data[].attributes.body
The Willow Tree Centre provides a free confidential and unbiased one-to-one listening and support service for women (and their partners) experiencing difficulties related to unplanned pregnancy and after all types of pregnancy loss

# data[].attributes.attachment_link.description
willow tree centre unplanned pregnancy abortion post abortion miscarriage stillbirth ectopic pregnancy help support Bristol Yate Bath South Gloucestershire listening counselling The Willow Tree Centre Thewillowtreecentre thewillowtreecentre.org.uk thewillowtreecentre.org.uk

# data[].attributes.body
A charity supporting the wellbeing of those experiencing baby loss and infertility (National)

# data[].attributes.attachment_link.title
The Worst Girl Gang Ever - Support for Miscarriage + Baby Loss

# data[].attributes.attachment_link.description
Welcome to The Worst Girl Gang Ever – a support platform and podcast for miscarriage and baby loss. Founded by Bex and Laura, best selling authors and award winning podcast hosts, TWGGE offers a community to support you through the storm of baby loss and onwards in your journey.

# data[].attributes.headline
Baby Loss Support Group (First Wednesday of the month) 7-9pm at Frome Town Hall

# data[].attributes.subject
Baby Loss Support Group (First Wednesday of the month) 7-9pm at Frome Town Hall

# data[].attributes.body
Frome Town Hall
Christchurch Street West
Frome
Somerset
​BA11 1EB

# data[].attributes.attachment_link.description
Local charity Frome Birth Talk has recently launched its new support group for people who have experienced baby loss. The group takes place from 7-9pm on the first Wednesday of every month at Frome…

# data[].attributes.body
Providing hope + empowering voices for parents & families following IVF, preganacy or baby loss

# data[].attributes.headline
Waterbugs and Dragonflies – Baby loss support group Salisbury

# data[].attributes.subject
Waterbugs and Dragonflies – Baby loss support group Salisbury

# data[].attributes.body
Sarum College 19 The Close, Salisbury SP1 2EE

3rd Tuesday of each month, 7-8.30pm.

For more information or if you wish to confirm attendance, please email sft.bensonsuite@nhs.net

# data[].attributes.headline
The HOPE boxes - Support mothers and babies separated due to safeguarding concerns

# data[].attributes.subject
The HOPE boxes - Support mothers and babies separated due to safeguarding concerns

# data[].attributes.body
A therapeutic cross-agency offer designed to support mothers and babies separated close to birth due to safeguarding concerns.

# data[].attributes.attachment_link.title
The HOPE Boxes – Giving Hope and Minimising Trauma

# data[].attributes.body
Open conversations, sharing real stories of grief, love and healing. For families, staff and communities. Listen at www.lovelifeandloss.org

# data[].attributes.attachment_link.description
Use our quick and easy online referral form . It takes less than 5 minutes to complete. If you are experiencing any issues with making a referral via our web journey, please download the appropriate referral form , and email it into helpline@voiceability.org .

# data[].attributes.attachment_link.readable_text
We are the advocacy people

As an independent charity, all of the services we provide are free and confidential .

We all know how hard it can be when we don't feel listened to, when what's important to us isn't taken seriously by others, or we just don't have the words to say what we really feel or want.

It can be even more difficult when decisions are being made about our health and social welfare.

We're The Advocacy People and we can help. We'll take time to understand your situation, explore the options and help you decide what you want to do and how you want to do it. We can give you as much or as little support as you want to put your views across.

We won't judge you, tell you what to do or take over things when you can do them yourself: it's your life and you deserve to be heard.

The areas in which we currently provide services are shown on the map below. Click on any highlighted area on the map to see which services we provide in that area.

For an alternative list of areas we provide services in, click here.

# data[].attributes.attachment_link.description
We are The Advocacy People, a charity which helps you in accessing mental health services, nhs complaints or social care services.

# data[].attributes.attachment_link.provider_name
Sands - Saving babies' lives. Supporting bereaved families.

# data[].attributes.attachment_link.readable_text
The hospital review - or a Perinatal Mortality Review Tool (PMRT) - is done for ALL baby deaths after 22 weeks. For most babies, a PMRT will be the only review of their death.

The aim of a hospital review is to see if anything could have been done to prevent your baby from dying - this is called 'avoidable harm'.

The review is an opportunity for the hospital to learn any lessons to improve care.

You have a right to be involved in the review of your baby's death. This means that you can ask the maternity service to address any questions or concerns you have about your care. You should be given the name of a key contact (a bereavement or risk midwife) who you can speak to about any questions or concerns.
What happens during a hospital review ?
The hospital review looks at your clinical case notes (and your baby's, if your baby was born alive) to see if there was anything about your or your baby's care, which if done differently, could have prevented your baby from dying. The hospital review also looks at the quality of bereavement care you received to ensure there wasn't any further psychosocial harm to you after your baby died
The hospital review team will:

Look at medical records, tests and results, including the results of a post mortem if you have consented to one

Talk to staff involved

Talk to you to find out if you have any questions or concerns

Look at local and national guidance and policies to ensure they were followed

Before you leave hospital, staff should inform you about the review process and ask you if you would like to share your perspective or ask any questions about your care. It's important that any questions or concerns you have about your care are addressed by the hospital review team. Don't be afraid to tell them what your concerns are. Reviews are one of the ways services learn.

To support you in doing this, the hospital should provide you with a key contact.
Your key contact will:

Call you within 10 days of you going home to inform you again about the review process.

Ask if you would like to ask any questions or share your concerns.

Give you choices about how you might contribute to the review, either in person, online or via telephone or email.

Parents are typically not allowed to attend the hospital review meeting but your key contact will ensure your questions are addressed in the meeting.
Keeping you informed
Unfortunately, it can take several weeks or months to gather all the information required for the review. If you'd like to meet with a consultant before the review takes place, you can arrange this through your key contact. However, they may not yet be able to answer your questions until the review is compete.

If you have consented to a post mortem, information from it will need to be included in the hospital review and this can add to the time it takes to complete your review.

Once the review is completed, a report is written. You will be invited to discuss the results with a senior clinician or member of the clinical team. The hospital will also send you the report by post or email if you prefer.
What if I don't agree with the report?
The outcome of the hospital review might be that good and appropriate care was given to you. Or it may find that the hospital needs to change the way staff do things. If the review found that the hospital did not provide adequate care, there wil be actions the hospital must take to improve care for future parents. The hospital must be open and honest about any mistakes they made and say sorry to about these mistakes.

If the hospital has made a mistake, they will start another type of investigation called a Patient Safety Incident Investigation (PSII). You can find out more in the next section.

# data[].attributes.attachment_link.title
Reviews and investigations | Sands - Saving babies’ lives. Supporting bereaved families.

# data[].attributes.headline
Maternity and Neonatal Safety Investigations (MNSI)

# data[].attributes.subject
Maternity and Neonatal Safety Investigations (MNSI)

# data[].attributes.attachment_link.readable_text
The Maternity and Newborn Safety Investigations (MNSI) programme investigates certain cases of:

early neonatal deaths, intrapartum stillbirths and severe brain injury in babies born at term following labour in England

maternal deaths in England.

Full details of what we investigate can be found below.

Babies

Babies who meet our criteria include all term babies born following labour (at least 37 completed weeks of gestation), who have one of the following outcomes:

intrapartum stillbirth

early neonatal death

potential severe brain injury.

We do not investigate cases where health issues or congenital conditions (something that is present before or at birth) have led to the outcome for the baby.

The definition of labour that we use includes:

Any labour diagnosed by a health professional, including the latent phase (start) of labour at less than 4cm cervical dilatation.

When the mother called the maternity unit to report any concerns of being in labour, for example (but not limited to) abdominal pains, contractions, or suspected ruptured membranes (waters breaking).

Induction of labour (when labour is started artificially).

When the baby was thought to be alive following suspected or confirmed pre-labour rupture of membranes.

This means that for us to investigate a maternity incident under the MNSI criteria, the mother must have been in term labour as defined by these conditions.

We do not investigate neonatal cases where the mother has not gone into labour. For example, when a caesarean section was performed before the mother had started having contractions or ruptured her membranes.

Intrapartum stillbirth

Where the baby was thought to be alive at the start of labour and was born with no signs of life.

Early neonatal death

When the baby died within the first week of life (0-6 days) of any cause.

Potential severe brain injury

Potential severe brain injury diagnosed as occurring in the first seven days of life, when the baby:

Was therapeutically cooled (active cooling only), or

Has been diagnosed with moderate to severe encephalopathy, consisting of altered state of consciousness (lethargy, stupor or coma) and at least one of the following:

1. hypotonia;

2. abnormal reflexes including oculomotor or pupillary abnormalities;

3. absent or weak suck;

4. clinical seizures.

We no longer routinely investigate cases involving therapeutically cooled babies where there is no apparent ongoing neurological injury following cooling therapy. This would usually mean a brain MRI showing no hypoxic damage (a type of brain injury that occurs when there is a disruption in supply of oxygen to the brain) and the baby demonstrating no ongoing neurological signs or symptoms. However, this remains as one of our criteria. NHS trusts should continue to refer cases to us. We'll decide which investigations proceed based on an individual baby's clinical outcome, after discussion with the family and the NHS trust.

Maternal deaths

We investigate direct or indirect maternal deaths of women while pregnant or within 42 days of the end of pregnancy.

We may investigate some maternal deaths which do not entirely fit within these two categories.

We do not investigate cases where suicide is the cause of death.

Direct deaths

Direct deaths include those resulting from obstetric complications of the pregnant state (pregnancy, labour and after the birth), from interventions, omissions, incorrect treatment or from a chain of events resulting from any of the above.

Indirect deaths

Indirect deaths include those from previous existing disease or disease that developed during pregnancy, and which was not the result of direct obstetric causes but was aggravated by the physiological effects of pregnancy in the perinatal period (during or within 42 days of the end of pregnancy).

When we cannot investigate

Some maternity incidents that meet our criteria will have occurred before our programme began nationally in 2018, or within a period where the programme had not yet been implemented in the NHS trust where the incident took place.

There will also be some incidents with characteristics which fall close to, but not completely within, the scope of the MNSI criteria.

Due to specific conditions set out in the Directions that govern our maternity programme, we have no remit to investigate these incidents and the responsibility to complete the investigation remains with the local NHS trust.

We recognise that this may be disappointing for families who hope to see learning from their personal experience contribute to changes at a national level to improve maternity safety. Please have a look at our list of some of the other organisations who may be able to offer you help and support.

# data[].attributes.attachment_link.description
The Maternity and Newborn Safety Investigations (MNSI) programme investigates certain cases of: early neonatal deaths, intrapartum stillbirths and severe brain injury in babies born at term following labour in England maternal deaths in England. Full details of what we investigate can be found below.

# data[].attributes.attachment_link.provider_name
Sands - Saving babies' lives. Supporting bereaved families.

# data[].attributes.attachment_link.title
Post-mortem examination | Sands - Saving babies' lives. Supporting bereaved families.

# data[].attributes.attachment_link.description
A post-mortem (also called an autopsy) is a medical examination to help understand the medical reason for why your baby died. A healthcare professional who knows about the post-mortem process will talk with you about your options of having a post-mortem and can answer any questions you have.

# data[].attributes.attachment_link.provider_name
Sands - Saving babies' lives. Supporting bereaved families.

# data[].attributes.attachment_link.title
National Perinatal Mortality Review | Sands - Saving babies' lives. Supporting bereaved families.

# data[].attributes.attachment_link.provider_name
Sands - Saving babies' lives. Supporting bereaved families.

# data[].attributes.attachment_link.readable_text
Child Death Review (CDR) information

By law in England, the death of every child from a newborn up to 18 years old will receive a child death review (CDR). Completed reviews will be reviewed again by a local Child Death Overview Panel (CDOP).

The purpose of the CDOP is to provide an overview of deaths to see if they could have been prevented where possible. More than 50 CDOPs are in place across the country, and each is accountable to the local safeguarding children board. They are made up of representatives from social care, and the police as well as coroners and paediatricians. Panels meet several times a year to review all the child deaths in their area. Panels are not given the names of the children who died or the professionals involved in their care. The main purpose is to identify themes and prevent similar deaths in the future.

Child Death Overview Panelsdo not produce reports on individual child deaths, which is why parents do not receive any information from the panels about their individual child. The panels do, however, produce an annual report which is a public document.

You should have been told by your hospital if your baby's death was being reviewed by your local CDOP.

To find out the contact details of the CDOP in your local area, go to this page.

Sands is on the Steering Group of the National Child Mortality Database (NCMD) ensuring the voices of parents are central to their work. Launched on April 1st 2019, the NCMD collects all information on child deaths across England to get a national picture of how deaths might be prevented and care improved for future families.

# data[].attributes.attachment_link.title
Child death review | Sands - Saving babies' lives. Supporting bereaved families.

# data[].attributes.attachment_link.description
By law in England, the death of every child from a newborn up to 18 years old will receive a child death review (CDR). Completed reviews will be reviewed again by a local Child Death Overview Panel (CDOP). The purpose of the CDOP is to provide an overview of deaths to see if they could have been prevented where possible.

# data[].attributes.headline
Maternity and Neonatal Safety Investigations (MNSI)

# data[].attributes.subject
Maternity and Neonatal Safety Investigations (MNSI)

# data[].attributes.attachment_link.description
We're working on our website. Please tell us if you spot an issue: Enquiries@mnsi.org.uk.

# data[].attributes.attachment_link.title
Tommy's Always Ask Questions and concerns v01

# data[].attributes.headline
Patient Safety Incident Response Framework (PSIRF)

# data[].attributes.subject
Patient Safety Incident Response Framework (PSIRF)

# data[].attributes.attachment_link.readable_text
The Patient Safety Incident Response Framework (PSIRF) sets out the NHS's approach to developing and maintaining effective systems and processes for responding to patient safety incidents for the purpose of learning and improving patient safety.

Aidan Fowler, National Director of Patient Safety, NHS England - "The introduction of this framework represents a significant shift in the way the NHS responds to patient safety incidents, increasing focus on understanding how incidents happen - including the factors which contribute to them."

Contents

Rt Hon Jeremy Hunt, MP - "The new Patient Safety Incident Response Framework is very welcome. It is great to see the involvement of those affected by patient safety incidents at its heart and the emphasis on learning and improvement are vital if we are to reduce avoidable harm across the NHS."

A new approach to responding to patient safety incidents

The PSIRF will replace the current Serious Incident Framework (2015).

The framework represents a significant shift in the way the NHS responds to patient safety incidents and is a major step towards establishing a safety management system across the NHS. It is a key part of the NHS patient safety strategy.

The PSIRF supports the development and maintenance of an effective patient safety incident response system that integrates four key aims:

1. Compassionate engagement and involvement of those affected by patient safety incidents

2. Application of a range of system-based approached to learning from patient safety incidents

3. Considered and proportionate responses to patient safety incidents

4. Supportive oversight focused on strengthening response system functioning and improvement

Who does PSIRF apply to?

The PSIRF is a contractual requirement under the NHS Standard Contract and as such is mandatory for services provided under that contract, including acute, ambulance, mental health, and community healthcare providers. This includes maternity and all specialised services. Primary care providers may also wish to adopt PSIRF, but it is not a requirement at this stage. Further exploration is required to ensure successful implementation of the PSIRF approaches within primary care.

Dr Sean O'Kelly, Chief Inspector of Hospitals and Interim Chief Inspector of Primary Medical Services, Care Quality Commission - "We welcome the publication of NHS England's new Patient Safety Incident Response Framework (PSIRF) and the focus it places on effective learning and compassionate, meaningful engagement with those affected when incidents occur. Through our monitoring and inspection we have seen how the existence of a strong organisational safety culture, where the views of staff and patients are listened to and acted on, and learning is prioritised is essential to good practice in responding when things go wrong."

Saffron Cordery, Interim Chief Executive, NHS Providers - "We welcome this framework as a key tool to ensure that investigation processes and responses by trusts lead to effective learning and improvement, contributing to better patient safety and outcomes - the top priority of trust leaders."

PSIRF podcasts

We are continuing to record a series of podcasts to help introduce PSIRF and support providers to prepare for its implementation. Links to these podcasts are listed below, in chronological order from newest to oldest:

Early adopters share their experiences

In the videos below early adopters describe their experience of implementing PSIRF

Lucy Winstanley, Head of Patient Safety and Quality, West Suffolk NHS Foundation Trust

Megan Pontin, Patient Safety Incident Investigator, West Suffolk NHS Foundation Trust

Saranna Burges, Director for Patent Safety and Quality, Norfolk and Suffolk NHS Foundation Trust

Lisa Falconer, Head of Clinical Quality and Patient Safety, NHS Derby and Derbyshire ICB

Preparing for PSIRF

Implementation of PSIRF will not be achieved by a change in policy alone, and it cannot be implemented in days or weeks as it requires work to design a new set of systems and processes. To help organisations prepare to transition to PSIRF we have developed a preparation guide to support those leading PSIRF implementation across the NHS.

Organisations are expected to transition to PSIRF within 12 months of its publication, and transition should be completed by Autumn 2023. The preparation guide breaks PSIRF preparation into six phases to ease transition and provide detail around discrete activities that will set strong foundations for implementing the framework.

Dr Rosie Benneyworth, Interim Chief Investigator at the Healthcare Safety Investigation Branch (HSIB) - "We welcome the publication of the Patient Safety Incident Response Framework (PSIRF), a significant development in the patient safety landscape in England. PSIRF reflects the key principle that guides our national patient safety investigations - a focus on understanding how incidents happen rather than attributing blame or liability - and applies this to local investigations. As well as co-authoring the supporting guidance around involving patients, families and staff, HSIB has developed a range of training courses to help NHS trusts put PSIRF into practice."

Supporting documents

The PSIRF is supported by further detail provided in four guidance documents:

Engaging and involving patients, families and staff following a patient safety incident

Guide to responding proportionately to patient safety incidents

Oversight roles and responsibilities specification

Patient safety incident response standards

We have also produced templates to guide organisations through the development of their patient safety incident response policy and patient safety incident response plan

Engaging and involving patients, families and staff following a patient safety incident

Compassionate engagement and involvement of those affected by patient safety incidents is central to PSIRF.

Please visit our Engaging and involving patients, families and staff following a patient safety incident webpage for further information.

Learning response toolkit

The PSIRF promotes a range of system-based approaches for learning from patient safety incidents. Organisations are encouraged to use the national tools and guides available in our learning response toolkit.

The national tools have been developed in collaboration with human factors experts and the Healthcare Safety Investigation Branch, who lead the way in modern healthcare safety investigation methodology. They have been tested with representative end users whose feedback has been instrumental in informing the design.

We will continue to review and evaluate the design of the Patient Safety Incident Investigation report template.

If you would like to provide feedback, please contact patientsafety.enquiries@nhs.net

Join our PSIRF FutureNHS workspace

Further resources (including webinars, podcasts and additional tools) to support providers to prepare, transition and work under PSIRF will be made available throughout 22/23 via our PSIRF FutureNHS workspace. This workspace is part of the NHS Patient Safety workspace

We will also use this workspace to communicate with staff and local stakeholders via the message board. This workspace is available for anyone to join (you don't need an NHS email). If you're not a member and would like to join please email NHSps-manager@future.nhs.uk.

Upcoming PSIRF webinars

To continue to support organisations as PSIRF goes live, we are hosting a further series of webinars up to September 2024, to share experiences and learnings as the framework is operationalised.

Register via the links below:

Developing PSIRF

Reports by the Public Administration Select Committee in March 2015; the Government's response in July 2015; the Parliamentary and Health Service Ombudsman's report in December 2015; the CQC's report in June 2016, and the CQC's report in Dec 2016 all identified shortcomings in the way patient safety incidents are investigated and learned from.

In response to these reports, in 2018 we conducted a widespread engagement exercise around the future of NHS patient safety investigation to gather thoughts and feedback to support us to develop the PSIRF to replace the existing Serious Incident Framework.

The PSIRF was developed based on the feedback received through our The future of NHS patient safety investigation engagement activity.

Published in March 2020 the Introductory PSIRF was tested by 24 early adopters (including 17 provider organisations alongside their commissioners and regional leads) for two years. The early adopter programme was independently evaluated and alongside feedback from our early adopters has informed the development of the PSIRF (2022).

The evaluation report is available on our FutureNHS workspace.

List of early adopters

Listed by region, we would like to thank the following early adopter organisations that have been instrumental in the development of the final version of the PSIRF:

East

Norfolk and Suffolk NHS Foundation Trust

East Suffolk and North Essex NHS Foundation Trust

Essex Partnership University Foundation Trust

West Suffolk NHS Foundation Trust

NHS Suffolk and North East Essex ICS

London

London Ambulance Service NHS Trust

North West London Collaboration of ICSs

Midlands

Chesterfield Royal Hospital NHS Foundation Trust

Derbyshire Community Health Services NHS Foundation Trust

Derbyshire Healthcare NHS Foundation Trust

Derbyshire Health United

University Hospital Derby and Burton NHS Foundation Trust

NHS Derby and Derbyshire ICS

National

Care UK (Independent provider of healthcare in prisons)

North East and Yorkshire

Leeds Teaching Hospitals NHS Trust

NHS Leeds ICS

North West

East Lancashire Hospitals NHS Trust

NHS East Lancashire

South East

Isle of Wight NHS Trust

NHS Isle of Wight

South West

Cornwall Partnership NHS Foundation Trust

North Bristol NHS Trust

Royal Cornwall Hospitals NHS Trust

NHS Kernow

Get in touch

If you would like to get in touch, please contact Patientsafety.enquiries@nhs.net.

Alternatively, you can use the PSIRF discussion board on our FutureNHS platform.

# data[].attributes.attachment_link.title
Patient Safety Incident Response Framework

# data[].attributes.attachment_link.description
The Patient Safety Incident Response Framework (PSIRF) sets out the NHS's approach to developing and maintaining effective systems and processes for responding to patient safety incidents for the purpose of learning and improving patient safety.

# data[].attributes.attachment_link.title
Introducing the Patient Safety Incident Response Framework (PSIRF): A framework for learning

# data[].attributes.body
The charity for patient safety and justice

# data[].attributes.attachment_link.readable_text
Supporting people with hearing difficulties or special or complex language needs

We can support you if you are a Deaf person, or have difficulty hearing or speaking, or have special or complex language needs. These could include a learning disability, mental health condition, idiosyncratic or non-standardised sign language use, or limited language development. See below for details or click below to email support.

# data[].attributes.attachment_link.title
How We Can Help - The Ectopic Pregnancy Trust

# data[].attributes.attachment_link.description
Supporting people with hearing difficulties or special or complex language needs We can support you if you are a Deaf person, or have difficulty hearing or speaking, or have special or complex language needs. These could include a learning disability, mental health condition, idiosyncratic or non-standardised sign language use, or limited language development.

# data[].attributes.body
We aim to be a family for every individual who seeks asylum or is granted refugee status in Swindon, and to help them to rebuild their lives.

# data[].attributes.attachment_link.description
We aid refugees and asylum seekers across Swindon

# data[].attributes.attachment_link.readable_text
Just like any other child, an autistic child will need their grief to be recognised and understood and to be given opportunities to express how they feel. Because of the nature of their autism, an autistic child may not respond to the death of someone close to them in the same way as other children but this does not mean they are not grieving. This information covers some of the challenges bereaved autistic children may face, and ideas for what might help.

How autism may affect a child or young person

Due to differences in how they process information and understand and understand abstract ideas, autistic children may have specific problems in developing their own ideas about death and the rituals that surround it. Other difficulties they face may relate to:

Mindblindness

An autistic child may find it more difficult to see things from another's point of view. This may make it hard for them to understand other people's feelings and behaviours, including not realising that others can help.

Information processing

An autistic child may have difficulties in understanding the rituals surrounding a death and in understanding the implications of a death. For example, they may not understand that because someone has died, this means they will not be there at the weekend, to take them to school or to celebrate a birthday.

Language and communication

An autistic child may find it difficult to understand abstract concepts and, as with any bereaved child, it can help to use clear, specific, concrete language, avoiding phrases such as 'gone away' or 'lost', which can be confusing. Autistic children may also find it difficult to let you know how they are feeling and to ask for support.

Preoccupations

An autistic child's focus on specific things may increase or grow more intense due to anxiety.

Imagination, time perception and memory

These may lead to difficulty in understanding the impact of a death. For example, understanding changes to routines, anticipating how things might be in the future and understanding events that they have not experienced before.

As well as suffering the loss of the person that has died, autistic children can be further distressed by all the changes that might happen in their day-to-day lives as a result of the bereavement. Below are suggestions on how to help support an autistic child who is bereaved.

Preparing for loss in advance

If the death of someone close is expected, children or young people can be prepared in advance and in a gradual way. They may need to be prepared for visits to a hospice or hospital. It is particularly helpful if they can be told beforehand about any changes they might notice, for example in the ill person's appearance (how they might sound, look or feel to the touch) or in everyday activities and routines. You may also need to explain whether there will be medical equipment such as intravenous lines or a ventilator, and that this might be noisy.

Keep to normal daily routines as much as possible.

Use clear, concrete language, avoiding euphemisms and abstract ideas.

Explain any likely changes in routine in advance, giving details about who will be doing what and when.

Use pictures and photographs to explain what will happen and when and how. For example, pictures of the hospice, or of the taxi that will take them to school or to swimming from now on.

Use calendars or other visual aids, for example, to mark hospital visits, as well as significant positive events such as visits to the park.

It can be helpful to develop rituals to mark a death, such as lighting a candle when an animal dies. The same ritual can then be used when a person dies.

When a death has happened

When someone dies, a child may need help in understanding the idea of death as well as opportunities to express their grief.

Use simple, concrete language and avoid euphemisms such as 'lost', 'passed away' or 'gone to sleep'. You may need to explain what dead means in concrete terms. You might say: 'When someone is dead their body is no longer working and their heart has stopped. A dead body cannot move or feel anything, so there is no pain.'

Use lots of examples to explain that death is permanent and not reversible, in a way that is appropriate to the child's understanding:

When someone has died they can never come back to life again.

Where possible, use pictures and real objects. Try to use a biological approach that is practical, clear, and visual, with concrete examples. For example, comparing a dead fish with a live fish, or observing flowers wilting and dying, or talking about what dead means when they come across a dead bird, for example.

Answer the child's questions as they arise - which may mean answering the same questions repeatedly. Answer simply, and honestly, and at an appropriate level for the child's understanding. Give enough information to answer the child's question, but without adding a confusing amount of detail.

Prepare the child for ceremonies or rituals that will include them, by visiting the relevant places beforehand. It may help to use photographs and draw up an explanatory story using words and pictures to explain what will happen. Clearly explain what the child is expected to do and show what other people will be doing and saying, and what will be happening around them.

Help the child to learn how to recognise different feelings and emotions in themselves and others as well as learning appropriate ways of expressing their feelings. You can do this by using everyday situations and events to point out different emotions in other people (such as on TV programmes, in magazines and stories), by using consistent and simple language to label emotions from the child's own experiences and by using pictures. Using pictures is particularly helpful for autistic children, and a 'feelings thermometer' can help a child express the intensity of an emotion. You can do this by drawing a picture of a thermometer with a rating scale up the side. Encourage the child to show where they are on the scale to rate the strength of their anger/sadness/worry. Similarly, using a picture of a volcano to illustrate anger and how it sometimes 'boils over' can be helpful.Using a 'comic strip conversations' technique can help others understand what an autistic child is thinking and feeling and can provide the opportunity to discuss things that the child might otherwise find difficult. This can help identify misunderstandings and highlight emotions that have perhaps not been openly expressed, or that have shown in other ways.

Keeping memories alive

When someone important to a child or young person dies, memories are an important part of the grief process. The person may be physically gone from the child's life, but the emotional bond will still be there. This is particularly true when a parent or main carer dies. Memories help any child to construct a sense of who it is they are grieving for and why. All memories have a part to play, whether of happy times or times that were not so good.

A piece of fabric, from an item of clothing worn by the person who has died, carried in a pocket or made into a cushion, can be comforting.

Similarly, smelling the favourite perfume or aftershave of the dead person on a hanky can be reassuring.

Putting together a memory box of physical reminders, chosen by the child. This can help give some insight into factors and events that are key to the relationship with the dead person. Try to include something relating to all five senses. A memory box, therefore, might include pictures of the person and pictures of things that person enjoyed, a small object that belonged to the person, a piece of fabric that is associated with that person (that may have a particular 'feel' to it), a memory stick with a playlist of music that the person enjoyed or videos of them, and something that reminds the child of the smell of that person (such as perfume, aftershave, toothpaste or deodorant).

Listening to audio tapes of the voice or favourite music of the dead person may be familiar and comforting.

Using photographs can help to create a timeline to spark off memories of significant events, and then build a life story of the person.

Visit our page: How we can support you for more on our services.

You can also call our Helpline 0800 02 888 40 , email , or use Live Chat on our website.

Latest

Related

Most read

Tag cloud

Short films delivered by our support practitioners giving guidance on a range of bereavement topics. Read more

A list of books and resources relating to grief and bereavement and what may help. Read more

Watch short films and read experiences of bereaved families and how support has helped them. Read more

# data[].attributes.attachment_link.keywords[]
charity bereavement child death grief loss baby stillbirth miscarriage suicide young people

# data[].attributes.attachment_link.description
Ways of recognising and understanding the grief of a bereaved autistic child and providing support.

# data[].attributes.attachment_link.readable_text
If your baby died before 24 weeks, there's no legal requirement to have a formal funeral.

The hospital staff will explain to you what they offer, and they should also give you written information. They will give you time to consider what you would like to do.

Alternatively, you can make your own arrangements for a funeral and/or burial or cremation. You might wish to consult a funeral director or a minister of your own faith.

The hospital chaplaincy team might also be a good source of information, advice and support, whether you have any religious beliefs.

You have the right to bury your baby's body or remains yourself. If you want to do this, you might need to make your wishes clear to the hospital staff or your GP as they might not be aware that this is legal.

For more information, visit Miscarriage AssociationOpens in a new window or SandsOpens in a new window

# data[].attributes.attachment_link.title
If you have a late miscarriage | MoneyHelper

# data[].attributes.attachment_link.description
If your baby died before 24 weeks, there's no legal requirement to have a formal funeral. The hospital staff will explain to you what they offer, and they should also give you written information. They will give you time to consider what you would like to do.

# data[].attributes.attachment_link.readable_text
A baby who's stillborn after 24 weeks of pregnancy must by law be formally buried or cremated, although a funeral isn't legally required.

If you live in England, Wales or Scotland, your local council won't charge you fees for a standard burial or cremation of a child.

Other fees, such a funeral director, flowers and memorial, will still need to be paid.

In England, the Children's Funeral FundOpens in a new window can contribute up to £300 towards any reasonable funeral costs such as the burial fees, cremation fees and a coffin, shroud or casket.

In Wales, there's also a £500 contributionOpens in a new window towards the funeral and other related costs such as floral tributes, plaques.

If you live in England or Wales and you are getting certain benefits, you can also apply for up to £1,000 Funeral Expenses Payment to help cover some of the other reasonable costs.

In Scotland, the average payment is £1,000 for contributionOpens in a new window towards any reasonable funeral costs you need to pay for such as the funeral service or funeral car.

In Northern Ireland, you can get up to £1,000 for reasonable funeral expenses for fees or items such as funeral director's fees, flowers, coffin.

If you're not using a funeral director, you can claim for some funeral expenses. Find out more on the GOV.UK website

The coronavirus outbreak has imposed serious restrictions on funerals, which makes organising a meaningful ceremony seem difficult. Find out more about what you can do on the Quaker Social Action website

# data[].attributes.attachment_link.description
A baby who's stillborn after 24 weeks of pregnancy must by law be formally buried or cremated, although a funeral isn't legally required. If you live in England, Wales or Scotland, your local council won't charge you fees for a standard burial or cremation of a child.

# data[].attributes.attachment_link.readable_text
Cookies on GOV.UK

We use some essential cookies to make this website work.

We'd like to set additional cookies to understand how you use GOV.UK, remember your settings and improve government services.

We also use cookies set by other sites to help us deliver content from their services.

You have accepted additional cookies. You can change your cookie settings at any time.

You have rejected additional cookies. You can change your cookie settings at any time.

Accept additional cookies Reject additional cookies View cookies

Skip to main content

The Children's Funeral Fund for England can help to pay for some of the costs of a funeral for a child under 18 or a baby stillborn after the 24th week of pregnancy.

It is not means-tested: what you earn or how much you have in savings will not affect what you get.

The burial or cremation must take place in England.

What the fund covers

The Children's Funeral Fund for England can help pay for the:

burial fees

cremation fees, including the cost of a doctor's certificate

coffin, shroud or casket (up to a cost of £300)

If you have other funeral expenses, you might be able to apply for Funeral Expenses Payment to cover them. You or your partner must be getting certain benefits - check if you're eligible for Funeral Expenses Payment.

How claiming works

The fees for the burial or cremation can be claimed directly by the burial or cremation provider - you should not be charged. How to claim for some other expenses (for example, the coffin) depends on if you are using a funeral director or not.

Claims must be made within 6 months of the funeral.

If you are using a funeral director

You do not need to submit any claims yourself.

The burial or cremation provider can claim for the fees of a burial or cremation. The money will be paid directly to them.

Your funeral director can claim for some other funeral expenses (for example, the coffin). The money will be paid directly to them.

If you are not using a funeral director

The burial or cremation provider can claim for the fees of a burial or cremation. The money will be paid directly to them.

Claim funeral costs online

You can claim for some other funeral expenses (for example, the coffin) online.

# data[].attributes.attachment_link.title
Support for child funeral costs (Children's Funeral Fund for England)

# data[].attributes.attachment_link.description
How to apply to the Children's Funeral Fund for help paying for a funeral for a child under 18

# data[].attributes.headline
Statutory Parental Bereavement Pay and Leave

# data[].attributes.subject
Statutory Parental Bereavement Pay and Leave

# data[].attributes.attachment_link.readable_text
Cookies on GOV.UK

We use some essential cookies to make this website work.

We'd like to set additional cookies to understand how you use GOV.UK, remember your settings and improve government services.

We also use cookies set by other sites to help us deliver content from their services.

You have accepted additional cookies. You can change your cookie settings at any time.

You have rejected additional cookies. You can change your cookie settings at any time.

Accept additional cookies Reject additional cookies View cookies

Skip to main content

You and your partner may be able to take time off work if your child dies before they turn 18, or if you have a stillbirth after 24 weeks of pregnancy.

The death or stillbirth must have happened on or after:

6 April 2020 if you're employed in England, Scotland or Wales

6 April 2022 if you're employed in Northern Ireland

You might be able to get leave, pay or both. You may be eligible for:

Parental Bereavement Leave

Statutory Parental Bereavement Pay

There's rules about when you can take your leave and pay and how to claim.

Employment rights when on leave

Your employment rights are protected while on Parental Bereavement Leave. This includes your right to:

pay rises

build up ('accrue') holiday

return to work

# data[].attributes.attachment_link.title
Statutory Parental Bereavement Pay and Leave

# data[].attributes.attachment_link.description
How to claim Statutory Parental Bereavement Pay and Leave: what you can get, check if you're eligible and how to claim it.

# data[].attributes.headline
Action Against Medical Accidents (AVMA) Brain injuries at birth

# data[].attributes.subject
Action Against Medical Accidents (AVMA) Brain injuries at birth

# data[].attributes.attachment_link.description
Have you recently had a baby at an NHS trust hospital and are worried that your baby suffered harm during the birth? In particular, immediately following their birth was your baby therapeutically cooled? Did they experience seizures (fitting)? Have you been told that your baby experienced a lack of oxygen to their brain (hypoxic ischaemic encephalopathy (HIE))? You may have been told that there is a risk your baby has a brain injury? An investigation into the treatment you received may already be underway.

# data[].attributes.body
The Maternity and Neonatal Independent Senior Advocate (MNISA) pilot service closed at the end of March 2026 and is no longer accepting referrals.

# data[].attributes.attachment_link.readable_text
The Maternity and Neonatal Independent Senior Advocate (MNISA) pilot service will be closing at the end of March 2026 and is no longer accepting new referrals.
The National Institute for Health and Care Research (NIHR) has published the evaluation of the Maternity and Neonatal Independent Senior Advocate (MNISA) Pilot which can be found here. We are grateful to the families, colleagues, and partners across Bath and North East Somerset, Swindon and Wiltshire who contributed to this important work.

Following consideration by the National Maternity and Neonatal Programme Board, it has been agreed that the pilot will conclude on 31 March 2026. Please be reassured that if you are currently receiving support or have recently been offered a referral into the service, Sascha remains committed to supporting you until the end of March 2026. Sascha will work with you to develop a personalised care and support plan to ensure you have access to the help and information you need after this point.

The MNISA Pilot has provided valuable learning, helping to highlight areas for improvement while recognising successes in maternity and neonatal care. The insights gained will inform future developments and contribute to a safer, more supportive service for families.

You can find further information and alternative support by visiting Support and information following an adverse incident or outcome in maternity or neonatal care

# data[].attributes.attachment_link.description
Maternity and Neonatal Independent Senior Advocate The Maternity and Neonatal Independent Senior Advocate (MNISA) pilot service will be closing at the end of March 2026 and is no longer accepting new referrals. The National Institute for Health and Care Research (NIHR) has published the evaluation of the Maternity and Neonatal Independent Senior Advocate (MNISA) Pilot...

# data[].attributes.headline
Practical medical tool to manage miscarriage at home and in hospital

# data[].attributes.subject
Practical medical tool to manage miscarriage at home and in hospital

# data[].attributes.body
The Rainbow Clinic: Improving maternity care following a previous loss

# data[].attributes.attachment_link.title
The Rainbow Clinic: Improving maternity care following a previous loss

# data[].attributes.attachment_link.description
Tommy’s Rainbow Clinics provide specialist care for women who are pregnant after stillbirth or neonatal loss. We want to find out what works and how to improve.

# data[].attributes.body
The process for reviewing deaths from 22 weeks gestation (>500grammes) up to 28 days after birth and post neonatal deaths where the baby spent time in NICU but may have died elsewhere