Useful Organisations, Contacts and Resources

Advocacy and Campaigning Groups

Hundred Families – Practical information and advocacy for families affected by mental health homicides in Britain.

AAFDA – Advocacy After Fatal Domestic Abuse.

Respond – A charity which supports people with learning disabilities and their families who have experienced trauma.

Survivors of Bereavement by Suicide – A charity that exists to meet the needs and overcome the isolation experienced by people over 18 who have been bereaved by suicide.

Bringing us Together – A family-led online support group and activist community.

Contact a Family – A charity for families with disabled children which brings families together to support each other. They support families with guidance and information.

Sibs – Sibs is the only UK charity representing the needs of siblings of disabled people. There are over half a million young siblings and at least 1.7 million adult siblings in the UK, who have grown up with a disabled brother or sister.

Oxfordshire Family Support Network – A support group which offers help, advice and support for families in Oxfordshire who are caring for someone with a learning disability.


Baby Loss

SANDS – A charity that specialises in supporting families where there has been a still-birth or neonatal death.ie if a baby dies shortly after birth.


Bereavement Support 

Sudden  This bereavement charity offers a helpline for families who experience any type of sudden, unexpected death.

Sudep (Epilepsy Death) – This charity supports families who have experienced a sudden, unexpected death from Epilepsy. They can offer advice in preparation for inquests and bereavement counselling.

Cruse – General bereavement support.

RESPOND – This charity supports people with a learning disability of autism who have experienced trauma, abuse or violence. They also offer support and advice for families who have a family member with LD or who have a family member with LD who has died. This charity offers specialist grief counselling

The Compassionate Friends – This long-established charity offers support, advice and counselling for bereaved parents. They have a helpline and organise events both locally and nationally.  They also publish a regular magazine.

SLOW (bereavement support) – This charity offers support for bereaved families and siblings in London. They organize local support groups throughout London where bereaved families and siblings can meet up and talk.

Sibs (support for brothers and sisters of disabled children/adults) – This charity offers all types of support and advice for the brothers and sisters of disabled children and adults. They also offer bereavement support.

Winston’s Wish – Bereavement support for children.


Domestic Homicide

AAFDA – A charity who offer advocacy and support for families affected by issues around domestic homicide. They also run training for professionals, conferences for families and offer a range of useful resources for families and for professionals.

Blog article: Domestic Homicide Reviews raise understanding of the link between domestic abuse and mortality

Domestic Homicide Review (DHR) Case Analysis – A report for Standing Together.


Inquests

INQUEST – An organisation providing free and independent advice to bereaved people following a death in state care or detention in England and Wales, and in other cases where wider issues of state and corporate accountability are in question. They also provide a guide to inquests for families. Downloadable and hard copies are available.


Learning Disabilities

Learning Disabilities Mortality Review aims to support improvements in the quality of health and social care service delivery for people with learning disabilities and to help reduce premature mortality and health inequalities for people with learning disabilities. A link on their website has a number of useful resources, including how to break bad news to someone with a learning disability.

Books Beyond Words has a series of books called When Someone Dies which are designed to help someone with a learning disability understand bereavement.

Mencap’s  2012 report Death By Indifference: 74 Deaths and Counting

Dimensions: Dying to matter: a guide for families following the death of someone with LD


Medical Issues/Medical Negligence/ Patient Hospital Deaths

AVMA – A well establish charity with a good reputation. They offer families advocacy, support and guidance, run campaigns and conferences to raise awareness of medical safety issues and also run a free helpline. 

Mother’s Instinct – An organisation run by Joanne Hughes, a bereaved mother, campaigns for better patient safety and supports harmed families.

Harmed Patients Alliance – This is a new organisation, run by James Titcombe and Joanne Hughes.  It aims to support harmed families after a death due to medical issues or medical negligence and campaigns for better awareness around these issues.


Mental Health

FAMS – A charity which offers peer group support from family members who have experienced murder, suicide and mental health issues.

Mind – The UK’s leading mental health charity which campaigns in many areas of mental health issues and information and support for families.

Rethink – This charity aims to improve the lives of anyone with mental health issues through peer support, services and information.

Sane – A charity which campaigns for issues around mental health and offers emotional support and advice to anyone struggling with mental health issues.


Mental Health Homicide

Hundred Families – A charity set up by Julian Hendy, whose father was killed in a mental health homicide.  The charity aims to raise awareness of mental health homicide, offer support and advocacy to families and training for professionals.

Victim Support – Homicide Service

Louise Casey Review into the needs of families bereaved by homicide.

Victims Commissioner Report – Victims of mentally disordered offenders


NHS Guidance and Reports

National Guidance on Learning from Deaths

The Francis Report

Freedom to Speak Up Report

Nursing and Midwifery Council Guidance on Duty of Candour

NHS Resolution – Research into the reasons why patients make claims for clinical negligence


PTSD

PTSD UK – An organisation providing support and advice for anyone with PTSD.


Suicide

Papyrus – Prevention of Young Suicide  – This charity supports and advises any family who is concerned about suicide in the family or has lost a family member to suicide. They offer a helpline, support and advocacy for families. They also offer training for professionals around suicide prevention.

National Suicide Prevention Alliance – This charity is an alliance of public, private, voluntary and community organisations in England who work to prevent suicide and support families affected by suicide.

Mental Health UK – An organisation which offers support, advice and help for anyone struggling with poor mental health or who has a family member which is.


Other Useful Contacts

Parliamentary & Health Service Ombudsman – They make final decisions on complaints that have not been resolved by the NHS in England and UK government departments and other public organisations. Their service is free.


We regularly update this page, adding new contacts and resources. If you know of an organisation or useful report which you think should be included here, please contact us.