If you think Contact a Family would be interested in linking to your website please email the Web Editor serena.shani@cafamily.org.uk. Our priority is to link to the sites of UK-wide support groups for specific conditions and we reserve the right to choose which sites we link to. We receive several requests a week and unfortunately, it isn't possible to notify everyone individually, so please don't resubmit your request if you haven't heard from us.
The organisations listed below provide a wide variety of services, advice and information relevant to children with disabilities and their carers. The Contact a Family Helpline 0808 808 3555 is able to provide further information.
Aids and equipment
British Red Cross
Tel: 0844 871 1111
http://www.redcross.org.uk
The British Red Cross has a volunteer-led medical equipment service that provides wheelchair hire and short-term loans of equipment in almost 1,000 outlets in the UK.
Disabled Living Foundation (DLF)
Tel: 0845 130 9177
Textphone: 020 7432 8009
http://www.dlf.org.uk
DLF gives impartial advice and information on all aspects of daily living equipment for children, including a UK-wide directory of suppliers. The DLF also has a website, self assessment, rapid access (SARA) site at www.asksara.org.uk
Fledglings
Helpline: 0845 458 1124
http://www.fledglings.org.uk
Fledglings is a national charity which aims to assist parents and carers of disabled children by identifying, sourcing and supplying practical, affordable products to address everyday issues.
MedicAlert
Tel: 0800 581 420 within the UK or 1800 581420 from Ireland
http://www.medicalert.org.uk
A charity providing an internationally recognised life-saving identification system for people with hidden medical conditions and allergies, supported by a 24-hour emergency telephone service (from within the London Ambulance Service).
Bereavement
Child Bereavement Charity
Tel: 01494 568900
http://www.childbereavement.org.uk
This organisation offers support to families and young people who have lost a child. There is a searchable database of support in your area on their website.
Child Death Helpline
Tel: 0800 282 986
http://www.childdeathhelpline.org.uk
The Child Death Helpline is for adults and young people affected by the death of a child whatever the time period since the death. The Child Death Helpline is staffed by bereaved parents. All volunteers are trained, supervised and supported by professionals within Great Ormond Street Hospital for Children NHS Trust, and the Alder Hey Children’s NHS Foundation Trust.
Cruse Bereavement Care
Helpline: 0844 477 9400
Young person’s helpline: 0808 808 1677
http://www.crusebereavementcare.org.uk
www.rd4u.org.uk (young person’s website)
Cruse Bereavement Care provides a free counselling service for bereaved families, including children and young people, over the telephone or through local offices providing one-to-one support or group work, plus forums for children/young people.
The Compassionate Friends
Tel: 0845 123 2304 (NI 028 77 88 016)
http://www.tcf.org.uk
This organisation has local befrienders who listen to and support all bereaved parents and their immediate families, a helpline staffed by bereaved parents, forums, a website for siblings and a legal helpline.
Carers
Carers Direct – part of NHS Choices
Tel: 0808 802 0202
http://www.nhs.uk
Carers Direct offers free, confidential information and advice from the NHS to help carers.
Carers UK
Tel: 0808 808 7777
http://www.carersuk.org
A UK-wide membership organisation run by carers for carers, providing information and advice to all carers.
Crossroads – caring for carers
Tel: 0845 450 0350
http://www.crossroads.org.uk
Crossroads provides a range of services to give carers in England and Wales a break from their caring responsibilities.
Crossroads Caring Scotland
Tel: 0141 226 3793
http://www.crossroads-scotland.co.uk
This organisation provides short breaks and practical support for carers in Scotland regardless of the age, disability or illness of the person receiving care.
The Princess Royal Trust for Carers
Tel: 0844 800 4361
http://www.carers.org
The Trust is a charity providing independent carers’ support services in the UK through its network of carers’ centres, young carers' services and interactive websites.
Education
Advisory Centre for Education (ACE)
Tel: 0808 800 5793
Exclusion advice line: 020 7704 9822 (24-hour answer machine)
http://www.ace-ed.org.uk
ACE offers guidance and advice on all aspects of state education, including special educational needs.
Independent Parental Special Education Advice (IPSEA)
Advice line: 0800 018 4016
Tribunal helpline: 0845 602 9579
Office: 01799 582030
http://www.ipsea.org.uk
IPSEA gives independent advice to parents who are uncertain about, or disagree with, the Local Educational Authority’s interpretation of their child’s special educational needs.
Funding
Family Fund
Tel: 0845 130 4542
http://www.familyfund.org.uk
The Family Fund provides grants and information for families looking after severely disabled or seriously ill children in the UK, up to their eighteenth birthday.
Turn2Us
Tel: 0808 802 2000
http://www.turn2us.org.uk
Turn2Us provides a comprehensive online service to help find sources of financial support based on particular needs and circumstances. Their helpline provides free, confidential information given by trained professional advisers on welfare benefits entitlement and applying for grants.
General support organisations
Newlife Foundation for Disabled Children
Tel: 01543 462777
Nurse helpline: 0800 902 0095
http://www.newlifecharity.co.uk
Newlife gives practical support for disabled children throughout the UK. They provide equipment-grant services to help individual children, and nurse-led support services offering information and support to parents, including an online chat service.
NHS Choices
Tel: 0845 4647 (24-hour line)
http://www.nhs.uk
NHS Choices provides information and advice about health, illness and health services 24 hours a day, including search features to find local health services. You can speak to a nurse on the helpline if you need medical advice and help to make complaints. There are links to equivalent services in Scotland, Northern Ireland and Wales.
Government
Directgov
http://www.direct.gov.uk/en/CaringForSomeone/index.htm
http://www.direct.gov.uk/en/DisabledPeople/index.htm
Directgov is a single point of online access for information, including information for carers on money issues, care and support services, employment and carers’ rights as well as information for disabled people on employment, education and learning, transport, rights and leisure.
Help for the armed forces
Soldiers, Sailors, Airmen and Families Association (SSAFA)
Tel: 0845 1300 975
Confidential support line: 0800 731 4880 (UK only)
http://www.ssafa.org.uk
SSAFA is a national charity helping serving and ex-service men and women and their families, including widows and widowers in need.
Hospice Care
Together for Short Lives
Tel: 0117 989 7820
http://www.togetherforshortlives.org.uk
Together for Short Lives is the new name for ACT & Children's Hospices UK, which merged on 1 October 2011. Their vision is for all children and young people unlikely to reach adulthood and their families to have the best possible care and support in the place of their choice. Together for Short Lives brings together all those involved in children's palliative care, from the children and families themselves to the professionals and organisations who provide the full range of care and support.
Umbrella organisations
Council for Disabled Children
Tel: 020 7843 1900
http://www.councilfordisabledchildren.org.uk/
The Council for Disabled Children is the umbrella body for the disabled children’s sector in England and has links to the other UK nations.
Genetic Alliance UK
Tel: 020 7704 3141
http://www.geneticalliance.org.uk
A national alliance of patient organisations with a membership of over 130 charities that support children, families and individuals with a genetic disorder. They provide a wide range of information on genetics, including a comprehensive glossary.
National Voices
Tel: 020 3176 0738
http://www.nationalvoices.org.uk
National Voices is a coalition of national health and social care organisations representing users of health and social care in England.
National Parent Partnership Network (NPPN)
Tel: 020 7843 6058
http://www.parentpartnership.org.uk
Parent Partnership Services (PPS) are statutory services offering information, advice and support to parents and carers of children and young people with special educational needs (SEN). PPS are also able to put parents in touch with other local and national organisations. The services they provide are confidential and impartial.
Parentline Plus
Tel: 0808 800 2222
http://www.parentlineplus.org.uk
Parentline Plus is a national charity that works for, and with, parents with any problem around a range of issues affecting parents and their families from having a new baby, starting a new relationship and disagreements in the family, to issues with teenagers, school, homework, sleep or eating patterns.
Young Carers
Sibs
Tel: 01535 645453
http://www.sibs.org.uk
Sibs provides information and support for siblings and how parents can support them. In addition, they provide information and advice for professionals supporting young carers.
Young Carers Net
c/o Princess Royal Trust for Carers (contact details above)
http://www.youngcarers.net
A website for siblings/young carers with discussion boards and chat rooms (moderated by adults who have been police-checked), an ‘Agony Aunt’ page for young people’s questions plus where to find local young carers’ projects around the UK.
Information last updated November 2010. If problems are experienced accessing these organisations then call our freephone helpline on 0808 808 3555.
|
|
|
|
|
Cash Counts
Subscribe to 
