Other helpful organisations
Support for loss through disability and/or special needs
Children’s Hospices Across Scotland (CHAS)
Area served: Scotland
Telephone: 0131 444 1900
Website: www.chas.org.uk
One to one support, counselling, group support, newsletters to the whole extended family. Two separate hospices for in patient and respite care.
support@chas.org.uk
Contact
Area served: National
Telephone: 0808 808 3555
Website: www.contact.org.uk
Offers a free helpline for parents and carers with a disabled child aged from birth to 25, living in any part of the UK. Provides support, information and training for families with disabled children. Local family support. Information and support for bereaved families who have lost a disabled child.
helpline@contact.org.uk
Hours: Helpline, Monday to Friday 9-5
Deafblind UK
Area served: National
Telephone: 0800 132320
Website: https://deafblind.org.uk/
Provides a range of practical and emotional support available for people living with deafblindness. Support includes:
Support and advice on accessing health and social care, welfare and benefits, housing and transport options, and technology
Free specialist support in South Wales
Specialist service provided by support workers (paid for service - please see website for funding options)
Free and confidential Helpline: 0800 132 320
Free counselling sessions
Hours: Helpline open Monday to Thursday, 9– 5.& Friday 9 – 4pm (excl bank holidays). Service available in English and British Sign Language (BSL)
FirstLight
Area served: Ireland
Telephone: 1800 391 391
Website: www.firstlight.ie
A bereavement support service for parents and families anywhere in Ireland who experience the sudden loss of a child up to the age of 18 years. They offer a national 24 hour helpline, home visits, therapy and peer support groups.
info@firstlight.ie
Hours: Helpline 24 hour
Freddie's Friends
Area served: Hull & Humber region
Website: https://www.freddiesfriends.org
Freddie's Friends provide specialist equipment, support and respite for disabled children and their families in the Hull & Humber region. Funding can be applied for according to the criteria:
- Applicants must live in the Hull and Humber region
- Funding applications must be up to a maximum of £250
- One application per year
- Equipment or treatment must be specialist and from a disability website
- All funding applications must be accompanied by a cover letter from a keyworker (e.g. teacher or physiotherapist)
Kindred Scotland
Area served: Scotland
Telephone: 0131 312 0362
Website: www.kindred-scotland.org
A charity set up to support parents of children with complex needs. They help one to one and group support, through to bereavement support.
enquiries@kindred-scotland.org
Love, Jasmine
Area served: Merseyside
Telephone: 0151 459 4779
Website: www.lovejasmine.org.uk
A bereavement support charity offering support to bereaved families in the Merseyside area. Support offered through one to one counselling, Adult Groups, Family Group Work, Sibling Support Groups (for children between the ages of 4-11) and Coffee Mornings.
enquiries@lovejasmine.org.uk
Hours: Monday to Friday, 09.30 - 17.00
Marie Curie Bereavement Support Service
Area served: National
Telephone: 0800 090 2309
Website: https://www.mariecurie.org.uk/help/support/bereavement
Services: Call Marie Curie Bereavement Support Service to find out more about being matched with a specially trained telephone volunteer who'll give you regular bereavement support. They'll provide a safe space where you can talk openly about your grief. You can access up to 6 telephone sessions of 45 minutes. This service is available for adults aged 18 or above and provides free ongoing emotional support over the phone with the same person each week, no matter where you live in the UK or whether you've accessed support from Marie Curie before.
Hours: 8am-6pm Monday to Friday and 11am-5pm on Saturday
Metabolic Support UK
Area served: National
Telephone: 0845 241 2173
Website: www.metabolicsupportuk.org
Metabolic Support UK was formerly known as CLIMB and are the leading patient organisation for inherited metabolic disorders and they are supporting thousands of patients worldwide. Their compassionate and experienced team delivers many support services to patients and families to meet their varying needs, including individual support, building communities, empowerment and advocacy.
contact@metabolicsupport.org
Muscular Dystrophy
Area served: National
Telephone: 0800 652 6352
Website: www.musculardystrophyuk.org
Together, fighting muscle-wasting conditions. Supporting each other through an online community, helpline number and local area.
info@musculardystrophyuk.org
National Autistic Society Scotland
Area served: Scotland
Telephone: 0141 221 8090
Website: www.autism.org.uk/scotland
Local services throughout Scotland providing support to people with autism and their families. Can offer specific assistance with bereavement as people with autism may not respond in a typical or expected way to grief or may respond much later.
generalenquiries.scotland@nas.org.uk
Reubens Retreat
Area served: National
Telephone: 01457 680 003
Website: www.reubensretreat.org
Reuben’s Retreat is a home-from-home for families bereaved of a child and for children with life limiting or threatening conditions and their parents and siblings. They walk side-by-side with individuals to whole families so they are not alone, providing support that is specific to their needs including therapeutic activities, counselling, drop-in and peer support groups, plus fun times, memory making and short breaks.
enquiries@reubensretreat.org.uk
Spina Bifida Hydrocephalus Scotland
Telephone: 0345 5211 300
Website: www.sbhscotland.org.uk
They offer a lifetime commitment of information and support to all those affected by spina bifida, hydrocephalus and allied conditions. A wide range of support including bereavement support.
mail@sbhscotland.org.uk
Stepchange Debt Charity
Area served: National
Telephone: 0800 138 1111
Website: www.stepchange.org
Free, impartial debt advice to anyone in the UK experiencing financial problems. Can advise any parents suffering financial hardship following the loss of a child eg bedroom tax issues, or withdrawal of benefits after the loss of a disabled child.
client.service@stepchange.org
Team Jak
Area served: Scotland
Telephone: 01506 412302
Website: www.teamjak.org.uk
They offer practical, social, and emotional support to children and young people aged 0-25 with cancer and related illnesses, their family, friends and those bereaved. Hospital visits, activities for families, angel days to sibling support.
info@teamjak.org.uk
Tell Us Once
Area served: National
Website: www.gov.uk/tell-us-once
Services: Tell Us Once is a free government service that allows you to report a death when you suffer a bereavement and need to tell central and local government. You will need to contact your Register Office in advance of using the Tell Us Once service which will normally be when you register the death. The Registrar will then advise you how to use the service.
The Haven
Area served: Lanarkshire
Telephone: 01555 811846
Website: www.thehavencentre.com
They offer a safe and peaceful place where people affected by a range of life limiting illnesses can come for support at a time when they need it most. They offer support when someone has died and in looking after your own wellbeing.
info@thehavencentre.com
Together for Short Lives
Area served: National
Telephone: Helpline 0808 8088100
Website: www.togetherforshortlives.org.uk
Together for Short Lives is the UK charity that is there to make sure that seriously ill children and their families can make the most of every moment they have together. Offering confidential emotional support and information so that families spend less time searching for information and more time together. Together for Short Lives was formed after the merger of ACT and Children's Hospices UK.
helpline@togetherforshortlives.org.uk
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Each year thousands of parents suffer the loss of a son or a daughter. Please help us to support families in their time of greatest need.