Support if you are Bereaved
This information sheet is for if you are bereaved by the loss of your child to SMA.
Who will be there?
As well as family and friends, there are other individuals and organisations that will be there to support you:
If you have used your local hospice services, the staff will provide you with support and can assist with planning your child’s funeral. Community team workers can offer home support visits and ongoing sibling support may also be available.
Children’s Palliative Care Teams
If you were supported by a palliative care team, the consultants and children’s nurses will provide you with practical and emotional support.
Hospital chaplains can offer religious or spiritual support to families of any or no faith.
G.P. and Health Visitor
You can talk with your G.P. or health visitor who can also refer you to counselling services and advise you of any other local voluntary organisations that can help.
Hospital Bereavement Officer
If your child died in hospital, the bereavement officer will be able to offer you advice about practical matters such as obtaining the medical certificate of death for your child, registering your child’s death, and providing information about local funeral directors.
SMA Organisations, Groups and Resources
Our support services team can provide emotional support by phone or email or may be able to visit you at home. They may be able to put you in touch with others who have experienced the death of their child through SMA. Phone 01789 267 520, or email: firstname.lastname@example.org
SMA Bereavement Support Group
Bereaved mum, Sarah Poole, has set up this closed Facebook group for parents and grandparents. You can find it by searching for ‘SMA Bereavement Support Group’ on Facebook.
Books / Reading
Family Experiences of Bereavement
Families whose child with SMA has died talk about their personal experience of grief and how they cope with bereavement: www.smauk.org.uk/family-experiences-of-bereavement
'A Girl Named Dennis: finding a way through losing a child - a father's story' by Matt Cunningham. Matt's daughter had SMA Type 1 and this book has been recommended to SMA UK by another father. You can find more information here.
If you think you would find it helpful, you can ask your G.P. to refer you to a counselling service. Waiting times for an appointment vary from area to area, which mean you might prefer to consider private counselling sessions. These organisations will be able to help you find a local counsellor:
British Association for Counselling and Psychotherapy (BACP)
Provide useful guidance on the counselling process and how to find a suitable counsellor:
www.bacp.co.uk 01455 883 300
Online information about different types of counselling, useful articles, events and a directory to search for qualified counsellors:
Provide relationship counselling. Relate centres are charities, fees are charged to cover the cost of the counselling session, not to make a profit. Some centres offer subsidised counselling sessions. Face-to-face, phone and online counselling services are offered:
A Child of Mine
www.achildofmine.org.uk 07803 751 229
Charity offering support to anyone affected by the death of a child. The website has information for families after a child's death and details of support groups around the country.
Antenatal Results and Choices (ARC)
845 077 2290 from a landline or 0207 713 7486 from a mobile
ARC offers non-directive support and information to expectant parents and bereaved parents before, during and after the antenatal screening and testing process.
Child Bereavement UK
www.childbereavementuk.org 0800 028 8840
This organisation (formerly known as the Child Bereavement Charity) offers a confidential service for bereaved families and professionals when a child has died and when a child is bereaved. The charity provides information, resources and guidance, signposting to other agencies, support and a discussion forum.
Childhood Bereavement Network
Searchable online directory of local and national services.
Child Death Helpline
www.childdeathhelpline.org.uk 0800 282 986
The helpline is for anyone affected by the death of a child of any age. Calls are answered by bereaved parents. Details of helpline hours are available on their website.
Children of Jannah
www.childrenofjannah.com 0161 480 5156
Bereavement services for Muslim families. They provide practical, emotional and spiritual support, whilst also providing information for friends, families, professionals and others.
www.contact.org.uk 0808 808 3555
A charity (known to many as ‘Contact a Family’) that supports families of disabled children and a has section on its website for help and advice. They are particularly helpful with financial matters and support for siblings.
Cruse Bereavement Care
www.cruse.org.uk 0808 808 1677
Cruse provides a telephone helpline and information in addition to trained volunteers who can provide face-to-face support and practical advice in branches across England, Wales and Northern Ireland. Young people aged 12 – 18 years can visit their own website - Hope Again - to find information and an interactive message board, to share their stories and support others in a similar situation.
Once upon a Smile
www.onceuponasmile.org.uk 0161 711 0339
A charity providing bereaved families with financial support, respite services and children’s support groups.
www.samaritans.org 116 123
Samaritans provides confidential, non-judgmental emotional support for people who are feeling distressed, through a free 24-hour helpline.
Stillbirth and Neonatal Death Charity (SANDS)
www.sands.org.uk 0808 164 3332
This UK charity provides support for parents whose baby dies before, during or shortly after birth.
The Compassionate Friends
www.tcf.org.uk 0345 123 2304
This UK charity offers bereavement support including a National Helpline, publications, postal library, forum and a website for bereaved siblings.
Together for Short Lives
www.togetherforshortlives.org.uk 0808 8088 100
A UK charity supporting families who have a child with a life-limiting condition. They have an online directory of services available in your area.
Twins and Multiple Births Association Bereavement Support Group (TAMBA BSG)
www.tamba.org.uk/bereavement 01252 332 344
A UK charity providing support for families who have lost one or more children from a multiple birth, during pregnancy or at any stage afterwards. The bereavement support group provides parent-to-parent support through a befriending service. All the befrienders are volunteers who have suffered a loss from a multiple pregnancy themselves.
www.winstonswish.org 08088 020 021
The Winston's Wish helpline offers support, information and guidance to families caring for a child or young person who has been bereaved. The website provides a range of information and a reading list.
Ways to Share Memories
Some families find it helpful to share memories and photos. You can do this on our website here.
There are also a number of memorial websites that people find helpful such as:
This memorial website charity helps bereaved people to create their own personalised and free online memorial that they can link with a charity of their choice: www.muchloved.com
You may also find these other information sheets helpful:
Author: SMA UK Information Production Team
Published: August 2018
Last updated: March 2019
Next full review due August 2021
We are grateful to the writers and reviewers who assist us in our information production. A list of who this includes may be viewed on our website: www.smauk.org.uk/our-writers-and-reviewers-panel or requested from email@example.com
Whilst every effort is made to ensure that the information in this publication is complete, correct and up to date, this cannot be guaranteed and Spinal Muscular Atrophy UK shall not be liable whatsoever for any damages incurred as a result of its use. SMA UK does not necessarily endorse the services provided by the organisations listed in our information sheets.
If you have any feedback about this information, please do let us know at firstname.lastname@example.org