Our Support and Advocacy Team offer confidential support to bereaved families for as long as you need. You can contact the Support and Advocacy Team and our helpline is open 9am to 5pm Monday to Friday. Either call 0345 389 9901 or email our Support and Advocacy team.
Out of hours support is available Monday to Friday 5pm-9pm, weekends and bank holidays 9am-5pm, call 07712 653258.
We also host a thriving WhatsApp community and monthly virtual coffee morning for our bereaved members. If you would like to be sent details about how to join please email us.
Rareminds counselling service
We understand that bereavement can be a difficult time and we want to offer the support of qualified, experienced counsellors who understand the psychological and emotional challenges of living with a rare disease.
Rare Minds provide a counselling service which is free to MPS Society members. This is a confidential service available to both patients and family members who are over 18.
Please contact your MPS Society Support and Advocacy Officer if you feel that this is a service you may benefit from.
Grief Chat
We know that no-one can understand exactly what your loss feels like to you. But we do understand that it’s sometimes easier to talk to someone outside of your friends and family about grief and the impact of bereavement of your life. This is why we offer the GriefChat service.
By clicking on the GriefChat box below, you can chat directly to a specially trained bereavement counsellor. GriefChat counsellors are experienced in supporting bereaved people and will listen to your story, explore how your grief is affecting you and help you to find any additional support you might need. GriefChat is a completely free service and is available Monday-Friday, 9am-9pm or by email out of these hours.
GriefChat provides emotional support for bereaved people, access to trained bereavement counsellors and referral into other specialist bereavement services.
Useful links
The following links are to other organisations which provide bereavement support.
Cruse Bereavement Care offers support, advice and information to children, young people and adults when someone dies.
Cruse Scotland is an affiliated organisation that gives bereavement support to people throughout Scotland.
Hope Again is the youth website of Cruse Bereavement Care with information about support available for young people.
Child Bereavement UK helps children, parents and families to rebuild their lives. Children and young people up to the age of 25 who are facing bereavement, and anyone affected by the death of a child at any age can access support.
The Child Death Helpline is a freephone service for all those affected by the death of a child at any age.
The Compassionate Friends offers support for bereaved parents and their families.
Grief Encounter supports bereaved children and young people up to the age of 25 with help available for parents and carers too.
Sue Ryder has an online bereavement support service and offers free and professional video counselling to anyone living in the UK and over the age of 18. (There may be a waiting list to access this service).
Winston's Wish provides emotional and practical bereavement support to children and young people up to the age of 25, their families and those who care for them.
The Samaritans offer emotional support 24 hours a day, whatever you are going through.
SHOUT can help if you are experiencing a personal crisis, are unable to cope and need support. It provides a confidential mental health text support service for anyone in the UK. Just text SHOUT to 85258.
You can find more general information about bereavement on the NHS and Mind websites.