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Where to look for help

Palliative Care resources


 together for short lives

Together for Short Lives is the leading UK charity that speaks out for all children and young people who are expected to have short lives. Together with everyone who provides care and support to these children and families, we are here to help them have as fulfilling lives as possible and the very best care at the end of life. We can't change the diagnosis, but we can help children and families make the most of their time together. Click here.


A Family Companion 2014: This Family Companion is designed especially for parents/carers and family members. It is designed to help parents think important things through, as well as provide information about what can be expected - explaining what should happen, why it should happen as well as making it clear what support should be made available, and where that support can be found. You can download it  here.


SWAN stands for 'syndromes without a name'. It is not a diagnosis, but a term used when a child or young adult is believed to have a genetic condition and testing has failed to identify its genetic cause. Syndromes without a name are also referred to as undiagnosed genetic conditions, unknown genetic conditions or undiagnosed genetic disorders. Click here

 jessie may

Jessie May Children's Hospice at Home

children's hospice

Children's Hospices South West

                           sirona lifetime

Lifetime Community Nursing and Psychology Service

You may also find the following information and documents helpful:

Bereavement resources

Children's Funeral Fund in England

The government has launched the new Children's Funeral Fund in England. The new fund can help to pay for some of the costs of a funeral for a child under the age of 18- or a baby stillborn after the 24th week of pregnancy. The burial or cremation must take place in England. It is not means-tested: what a parent earns or how much they have in savings will not affect what they get.

The fund can help pay for:

  • burial fees
  • cremation fees, including the cost of a doctor's certificate
  • a coffin, shroud or casket (up to a cost of £300).

More information about the Children's Funeral Fund is available here:

 Other helpful resources and information can be found below:

 winston's wish

This is a very good site to find help in talking with and supporting other siblings or wanting information for their schools. If you have other children who go to school you may want to share this site with the school. Click here

Helpline:  0845 123 2304

                       rosie crane

The Rosie Crane Trust provide a number of services aimed at supporting bereaved parents including a listening ear helpline open 24 hours a day, drop in centres in Yeovil and Taunton, befriending service and subsidised counselling. 


                 wish upon a star

Wish Upon A Star. This charity provides bereavement support for families who live in Wales who have lost a child suddenly and traumatically.



This website is particular helpful if you have lost  a baby or small child. Click here

Please see  here for 'the child death review, a guide for parents and carers.' 

Bereavement Support:

0808 802 6868

                    child death helpline

This helpline is staffed by parents who have themselves lost a child and therefor may be able to help in a more personal way. Click here

Helpline:  0800 282 986

 child funeral charity

This charity may well be able to help with funeral costs. Click here

Helpline:  01480 276088

 a child of mine

This site was set up by a parent whose child had died and she could find nothing that she needed at that time. Click here

Contact: 07803 751229

 bereavement advice

 A free helpline and web-based information service. They provide practical advice on coping after your loss. Click here

Contact: 0800 634 9494

 children of jannah

The website was launched in 2011 to support grieving Muslim parents and families. Clickhere

Support Line: 0161 480 5156

 the compassionate friends

TCF is a charitable organisation of bereaved parents, siblings and grandparents dedicated to the support and care of other bereaved parents, siblings, and grandparents who have suffered the death of a child/children. Clickhere

Helpline: 0845 123 2304

 contact a family

If your child died from a specific illness there may be websites that support parents whose child has died from that condition. Contact-a-Family is a very good organisation who may be able to help. Click here

Helpline: 0808 808 3555

sand rose

Sand Rose provides free breaks to any bereaved family or person although there is a particular emphasis on young families. They offer one or two week breaks in Cornwall and can also offer short breaks if needed. Sand Rose works through a nomination process. All requests for a break must be supported by a nominee. However, it seems that families can be referred by organizations or they can self-refer. They usually book 3 - 6 months in advance and Subsidised travel costs are available upon request.

They offer a unique place for people to adjust and become more able to cope with their loss. Grief is isolating. Experience shows that a break at Sand Rose provides that necessary stepping stone for people to move forward. Click here

                   Child bereavement UK

Child Bereavement UK supports families and educates professionals when a baby or child dies or is dying, or when a child is facing bereavement. Click here

          Child bereavement

The Childhood Bereavement Network (CBN) is the hub for those working with bereaved children, young people and their families across the UK. We underpin our members' work with essential support and representation: bringing them together across localities, disciplines and sectors to improve bereavement care for children.

          The Harbour

 The Harbour is a charity with over 20 years' experience of delivering professional counselling and psychotherapy, free of charge, to people affected by life-threatening illness or who are bereaved. Each year they support more than 200 people from Bristol and the South West, carrying out in the region of 2,000 counselling sessions per year. You don't need to live in Bristol to access our services, and you can refer yourself or be referred to them by another organisation - please contact them   if you have any questions about how to do this.

They focus on making the most of limited resources - they are a small yet professional team who are supported by passionate volunteers. 


             sudden charity logo

Sudden: Supporting suddenly bereaved children and young people:
What we do: We understand that people bereaved by sudden death suffer terribly - whether it's through a road crash, suicide, accident, or undiagnosed medical reasons. They are often left isolated, bewlidered and traumatised and need specialist support to help them cope. On this site you will find useful information to help you as a bereaved parent or to help you with a child's siblings.  Here you will find a link to the page you may like to see.