Palliative Care & Bereavement Support
In this section you will find the links to charities and support groups that exist as well as resources available to support families of infants receiving palliative care or for families in grief.
The organisations include national groups and local groups in the South West region. If you would like assistance to contact a charity please contact us via swneonatalnetwork@uhbw.nhs.uk and one of our team will help you with this.
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National Organisations
Peeps: This is a national charity which supports families with an infant affected by HIE (hypoxic-ischaemic encephalopathy) - www.peeps-hie.org
Together for Short Lives:T his is a national charity which helps families with an infant, child or young person living with a life-limiting condition - www.togetherforshortlives.org.uk
The Rainbow Trust: This is a national charity providing emotional and practical support to families who have a child with a life-limiting illness. They are in different parts of the country and the South West team covers: Bristol, Bath, North East Somerset, North Wiltshire and Gloucester - www.rainbowtrust.org.uk
SOFT UK: A national website and phoneline for anyone whose pregnancy or child is affected by Edwards’ syndrome (also called Trisomy 18) or Patau’s syndrome (also called Trisomy 13). SOFT UK | Support Trisomy Awareness Today
Camp Simcha: This is a national charity for Jewish families who have a child affected by a serious illness -Home - Camp Simcha
Local Organisations
Local Children’s Hospices: Care and support for families who have a child with a life limiting condition
Children’s Hospice South West have 3 hospices in Bristol: www.chsw.org.uk
Acorns Hospice in Worcester - www.acorns.org.uk
Helen & Douglas House in Oxford - www.helenanddouglas.org.uk
Julia’s House in Devizes - www.juliashouse.org
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National Organisations
If your baby has died shortly after birth, you might face financial strain on top of your grief. It’s important to know what you’re entitled to and who to talk to - If your baby has died shortly after birth | MoneyHelper
SANDS – Stillbirth and Neonatal Death Society This is a national organisation which offers support for bereaved families after the death of a baby. This support includes a telephone helpline and local support groups run by and for bereaved parents - www.uk-sands.org
Sands Bereavement Support Book Available to download on their website or to order. Includes chapters on neonatal care & end of life, saying goodbye to your baby, supporting children and information & support for relatives & friends. Available in 13 languages, as well as audio and easy read formats Sands Bereavement Support Book | Sands
Child Bereavement UK This is a national organisation that supports grieving families and those caring for them. They have a confidential listening service for anyone affected by the death of a child - www.childbereavement.org.uk
Child Death Helpline This is a national freephone helpline. All the volunteer staff are bereaved parents who are trained and supported by professionals - www.childdeathhelpline.org.uk
Compassionate Friends This is a national organisation which offers support to all families bereaved after the death of a child. They can offer group or one to one support - www.tcf.org.uk
Cruse –Bereavement Care This is a national organisation which offers support and counselling to all bereaved people. They also have a website specifically for bereaved young people - www.cruse.org.uk
For young people - www.hopeagain.org.uk
SANDs United Football Club: National organisation with football clubs across the UK including the South West - www.sands.org.uk/get-involved/sands-united-fc
Children of Jannah A national organisation for supporting bereaved parents, centred on the Muslim faith - www.childrenofjannah.com
Jewish Bereavement Counselling A London based organisation for bereavement support, centred on the Jewish faith - https://jbcs.org.uk
chana A support organisation for the Jewish community, offering practical and emotional support following miscarriage or baby loss -Baby Loss & Miscarriage — Chana Charity Ltd
Saying Goodbye This is part of the Mariposa Trust a national charity supporting families affected by baby loss, with information, advice and support - www.sayinggoodbye.org
Twins Trust Bereavement Support Group This is a national support group for families who are bereaved after the loss of a baby or babies during a multiple pregnancy. They offer a befriending service - www.twinstrust.org
Bliss This national organisation provides support and information for parents of babies in intensive and special care, this includes bereavement support - www.bliss.org.uk , Email ask@bliss.org.uk
SOFT-Support for Trisomy 13/18 and Related Disorders This national organisation offers support and information to the parents of children with trisomy 13 or 18 and related disorders and rare conditions for whom no other organisation exists. This includes bereavement support - www.soft.org.uk
The Lullaby Trust This is a national charity offering bereavement support following the unexpected loss of a baby or young child. They have a helpline and webchat service - www.lullabytrust.org.uk
Winston’s Wish A national charity for bereaved children. Their helpline offers support to parents and carers looking for childhood bereavement advice and support - www.winstonswish.org
Petals Counselling A London based counselling charity but also have support groups for Dads and Grandparents - Petals - Groups | Facebook
Kicks Count Provide a bereavement related story books aimed at siblings following a baby loss and following a pregnancy after a loss - www.kickscount.org.uk/shop/i-will-always-remember-our-baby-book
Footprints Baby Loss provides support to parents and families who experience the death of one or more of their twins or triplets before, during or after birth. Home - Footprints Baby Loss
2Wish is a charity which started in Wales and is now in areas of the South West of England. This charity offers support to families and health care professionals affected by the sudden death of a young person (including on a neonatal unit). About Us - 2 Wish
Jeremiah’s Journey This charity provides support to children, young people and their parents/carers when the future feels uncertain or when hope feels lost, in Plymouth and the surrounding areas - https://jeremiahsjourney.org.uk/
Balloons A charity in Exeter, Mid and East Devon which offers support to bereaved children - www.balloonscharity.co.uk
Children & Families in Grief A charity in South Devon with a team of therapists to support children and their family - www.childrenandfamiliesingrief.co.uk/about/us
Grief Encounter A charity that covers the South West region, with a centre in Bristol. The charity mainly supports bereaved children and young adults to the age of 25 but will also support parents if the charity is working with their child - www.griefencounter.org.uk
Luna’s Fund is a charity designed to offer practical and emotional support to bereaved parents in Devon & Cornwall following the loss of their baby. Neonatal Bereavement and Stillborn Charity | Luna's Fund | England
Wiltshire Tree House A new charity providing bereavement support to Children and young people up to the age of 25, the aim of the charity is to offer services across the whole of Wiltshire - www.treehousewiltshire.org.uk
The SANDS Snowdrop group Pregnancy and Baby loss support charity based in Yeovil. They offer group peer support monthly now taking place in person and also a befriender service for individual support - The Snowdrop Group - Yeovil SANDS - Home | Facebook
Snowdrop Men A closed Facebook local group for Dads who have suffered the loss of their baby - www.facebook.com/groups/625525414541478/?ref=share#bl
Towards Tomorrow Together Pregnancy and Baby loss support charity based in Bridgwater. Offer a range of services to families, including birth planning, memory boxes, doula support, group support and holistic therapies for families both experiencing a loss or in subsequent pregnancies - www.towards-tomorrow.com
Little Daffodils A pregnancy and baby loss support charity based in Chard. Run support groups - Little Daffodils - Home | Facebook
Rosie Crane Trust: Support parents who have suffered the bereavement of a child at any age in the Somerset area. Offer monthly drop-ins, 24 hour listening ear helpline and counselling support - www.rosiecranetrust.org
Wellbeing South Somerset: We developed from Yeovil Pregnancy Crisis Centre which has been counselling women in Yeovil since 2007 on issues surrounding pregnancy, miscarriage, abortion and infant death. We continue to offer a free counselling service to women and their partners dealing with these issues.
Josephine’s Star: A charity offering support to grieving families in the Somerset area. Offer one-to-one support sessions working with children to explore their grief and develop coping strategies, tailoring this to each child whilst designed to be fun. Working in conjunction with families, carers and schools to ensure the most positive outcomes for children - www.josephinesstar.org.uk
Penhaligon’s Friends: A charity in Cornwall offering support to bereaved children, young people, parents and carers - https://penhaligonsfriends.org.uk/
Luna’s Fund: A charity in the https://www.lunasfund.com/Plymouth and surrounding area offering practical support services to help bereaved parents - Luna’s Fund
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When Dinosaurs Die by Laurie Krasny Brown. For young children.
The Invisible String by Patrice Karst. For young children.
The Story of….. by Kate Polley. A selection of books which can be personalised, written specifically to share with children of lost siblings.
Where are you Lydie? by Emma Poore. For children aged 3-7 about sibling loss. Endorsed by Sands.
My Sibling Still by Megan Lacourrege. For siblings following miscarriage, stillbirth or infant death. This is a picture book written as a letter from the lost baby to their siblings.
We Had to Say Goodbye Before We Even Met by Irene Teague. Aimed at slightly older children. This is based on a true story written from the perspective of a sibling. The author is a clinical psychologist has had personal experience of pregnancy loss.
Always My Twin by Valerie Samuels. For young children who have experienced the death of their twin sibling before birth, after birth or as a young child.
Water Bugs and Dragonflies by Doris Stickney. A very small book which uses the metaphor of the water bugs and dragonflies to explain about death. Not specific to babyloss.
Goodbye Daisy by Stephanie Nimmo. This book was written to help children, especially non-verbal or learning-disabled children understand and communicate their feelings around death and dying.
Michael Rosen’s Sad Book by Michael Rosen. This book could be for children or adults, explaining sadness and grief.
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Please click on the link below for information written together by Together for Short Lives and Bliss to support you when the future feels uncertain.
Caring for your baby when the future is uncertain - Together for Short Lives
For further information and support about children’s palliative care, you can contact the Together for Short Lives Family Support Hub:
Helpline: 0808 8088 100
Helpline email: helpline@togetherforshortlives.org.uk