Useful links/advice sources

"Children's Hopsices UK" (previously The Association of Children's Hospices) is the national voice for children's hospice services and the children and families they care for. We strive to ensure that the estimated 20,000 life-limited children in the UK, and their families, have access to the unique range of services children's hospices provide." http://www.childhospice.org.uk

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"ACT is the first and only organisation in the UK concerned with the needs of all children with life-shortening condiitons and their families, regardless of the particular diseases involved. Helen House, along with other hospices for children, is a member of ACT. ACT, in consultation with the membership, publicly launched the Charter for Children with Life-Threatening Conditions and Their Families in June 1993." http://www.act4families.org.uk/

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"Hospice Information is a joint venture between St. Christopher's Hospice and Help the Hospices. It brings together the experience and established reputation for high quality of the Hospice Information Service at St. Christopher's and the national remit and innovative information developments of Help the Hospices. Together, we want to provide a world-class information service for health professionals and members of the public, on UK and international hospice and palliative care." http://www.hospiceinformation.info

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"Help the Hospices is the national charity for the hospice movement, founded in 1984 by Anne, Duchess of Norfolk." http://www.helpthehospices.org.uk

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This web-based resource provides information on the lifelites project, which aims to improve the quality of life for children with life-limiting illnesses, through the use of information technology. http://lifelites.org

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West Midlands http://www.acorns.org.uk

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Doncaster http://www.bluebellwood.org

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Stockton-on-Tees http://www.butterwick.org.uk

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Rachel House, Kinross Robin House, Balloch http://www.chas.org.uk

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South East England http://www.chasecare.org.uk

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Worthing, Sussex http://www.chestnut-tree-house.org.uk

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South West England http://www.chsw.co.uk

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Merseyside http://www.claire-house.org.uk

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Rainbow House in Surrey and Rainbow Fernstone in Northumberland. http://www.rainbowtrust.org.uk

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Loughborough http://www.rainbows.co.uk

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South East England http://www.demelzahouse.org

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Preston, Lancashire http://www.derianhouse.org.uk

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Quidenham (Norfolk), Milton (Cambs) and Ipswich (Suffolk) http://www.each.org.uk

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Carlisle http://www.eden-valley-hospice.co.uk

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Kent http://www.ellenorfoundation.org

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Manchester http://www.francishouse.org.uk

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Woodford Green, Essex http://www.havenhouse.org.uk

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Hope House in Oswestry and Ty Gobaith in Conwy. http://www.hopehouse.org.uk

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Hertfordshire http://www.irhh.org

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Dorset http://www.julias-house.org

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Luton http://www.pasque.org

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South End, Essex http://www.seech.org.uk

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Wetherby, Leeds http://www.martinhouse.org.uk

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Nr Winchester, Hampshire http://www.naomihouse.org.uk

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North London http://www.noahsarkhospice.org.uk

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Horizon House is in Newtownabbey. http://www.nihospice.com

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Milton Keynes http://www.phoenixlodge.org.uk

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Lincolnshire, Hull and East Riding http://www.standrewshospice.com

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Newcastle http://www.st-oswalds.org

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Staffordshire and South Cheshire http://www.donnalouisetrust.org

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Hampton, Middlesex http://www.shootingstar.org.uk

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Cardiff http://www.tyhafan.org

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dfsg@duchenne.demon.co.uk http://www.dfsg.org.uk

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Clic Sargent supports families with children suffering from cancer or leukaemia. http://www.clic.org.uk/

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The Muscular Dystrophy Campaign is the only UK charity focusing on all muscular dystrophies and allied disorders. It has pioneered the search for treatments and cures for over 40 years and provides practical, medical and emotional support to people affected by the condition. http://www.muscular-dystrophy.org/

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The Mission of the Jennifer Trust for Spinal Muscular Atrophy (JTSMA) is to be there for everyone affected by or involved with Spinal Muscular Atrophy (SMA), providing support and information, and investing in research. The JTSMA is the only British organisation dedicated to providing support, care, information and the funding of research into SMA. http://www.jtsma.org.uk/

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The Batten Disease Family Association (BDFA) was created in 1998 to support and help families, carers and professionals, who have contact with a child with Batten disease. http://www.bdfa-uk.org.uk/index.htm

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Children Living with Inherited Metabolic Diseases Tel: 0800 652 3181 Email: info@climb.org.uk http://www.climb.org.uk

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For parents caring for children with Duchenne Muscular Dystrophy. Tel: info@ppuk.org http://www.parentprojectuk.com

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Support group for undiagnosed conditions. Tel: 01922 701234 Email: info@undiagnosed.org.uk http://www.undiagnosed.org.uk

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For help and support with conditions relating to the heart. http://www.bhf.org.uk/index.asp

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The Contact a Family Directory Online has lots of information on specific conditions and rare disorders in children and young people. http://www.cafamily.org.uk/Idx/m.html

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Telephone number to register as a donor: 0845 60 60 400. Email: enquiries@uktransplant.nhs.uk https://www.uktransplant.org.uk/ukt/Consent.do?campaign=1377

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To register as a blood donor call 0845 7 711 711. http://www.blood.co.uk

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This website from the Department of Health provides details about services or benefits affecting carers. http://www.carers.gov.uk/

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This government site brings together information on public services, and includes sections health services, caring for a child or adult and disability. http://www.direct.gov.uk/CaringForSomeone/fs/en

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RADAR is an organisation campaigning for better lifestyles for disabled people and their families. http://www.radar.org.uk/RANE/Templates/frontpage.asp?lHeaderID=2

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NHS Direct has a wealth of information about illnesses and conditions and also links to other organisations. http://www.nhsdirect.nhs.uk

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Contact a Family is the only UK-wide charity providing advice, information and support to the parents of all disabled children - no matter what their health condition. They also enable parents to get in contact with other families, both on a local and national basis. http://www.cafamily.org.uk/index.html

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TheCarer was formed to offer a unique reference point on advice to carers of all ages and professions. Tips and advice to all carers on getting help, everyday practicalities, accommodation, health issues, money matters and bereavement http://www.thecarer.co.uk

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Cruse Bereavement Care exists to promote the well-being of bereaved people and to enable anyone bereaved by death to understand their grief and cope with their loss. The organisation provides counselling and support. It offers information, advice, education and training services. Tel: 0870 167 1677 Young person’s freephone helpline 0808 808 1677 Email: helpline@cruse.org.uk http://www.cruse.org.uk

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Whizz-Kidz provides specialised mobility transport for children, as well as training, information and advice to change the lives of disabled children. http://www.whizz-kidz.org.uk/Page.asp

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This organisation works to help bereaved families. http://www.childbereavement.org.uk/

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