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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.




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.


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)



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.


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.



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.


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.



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.



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.



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.



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.



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.



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.



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.



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.



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