|
|||||||
The views expressed in these websites and other quoted resources represent those of the authors and are not the views or official policy of The Encephalitis Society and its Professional Panel. |
Family Support
AFASIC
Support for children and young people who have speech and language difficulties. 2nd Floor, 50 -52 Great Sutton Street, London EC1V ODJ Tel 0845 35555577
www.afasic.org.uk
Brain and Spine Foundation
The Brain and Spine Foundation aims to improve the quality of life for people affected by all neurological disorders by providing information, support and education programmes including the Brain and Spine Helpline, which is staffed by neuroscience healthcare professionals and more than 30 booklets on neurological symptoms and conditions. 7 Winchester House, Cranmer Road, Kennington Park, London, SW9 6EJ Tel: 020 7793 5900 Brain and Spine Helpline 0808 808 1000.
Email: info@brainandspine.org.uk
Web: www.brainandspine.org.uk
Care Co-ordination Network UK
Work in partnership with disabled children, their families and professionals, to ensure that all families across the UK have access to high quality care co-ordination. Social Policy Research Unit, University of York, Heslington, York YO10 5DD, Tel: 01904 321959
Email: info@ccnuk.org.uk
Website: www.ccnuk.org.uk
Carers UK
Provides an information and advice service for anyone with a caring role., 20/25 Glasshouse Yard, London EC1A 4JT Tel: 0808 808 7777 CarersLine (Wed & Thurs, 10am-12pm and 2-4pm)
E-mail: info@ukcarers.org
Web: www.carersuk.org
Cerebra
Cerebra works to ensure that up-to-date, evidence-based knowledge is available and applied for the prevention of brain damage and for proven treatments. They also organise a wide range of training seminars, workshops and projects for parents, professionals and children themselves. Principality Buildings, 13 Guildhall Square, Carmarthen, Carmarthenshire, SA31 1PR Tel:0126 724 4200
Email: chris.j@cerebra.org.uk
Website: www.cerebra.org.uk
Contact a Family
Contact a Family provides support and advice to parents whatever the medical condition of their child. 209-211 City Road, London EC1V 1JN
Helpline 0808 808 3555
E-mail: info@cafamily.org.uk
Website: www.cafamily.org.uk
Crossroads - Caring for Carers
Supports a network of local care attendant schemes, 10 Regent Place, Rugby CV21 2PN Helpline: 0845 450 0350
www.crossroads.org.uk
Crossroads Scotland, 24 George Square, Glasgow G2 lEG Tel: 0141 226 3793
www.crossroads-scotland.co.uk
Crossroads Wales, 3rd Floor, 49, Charles Street, Cardiff CF10 2GD Tel: 02920 222282 www.crossroads-wales.demon.co.uk
CBIT (Child Brain Injury Trust)
The Child Brain Injury (CBIT) supports anyone in the United Kingdom affected by childhood acquired brain injury. They provide information, support and training to families and professionals. The Radcliffe Infirmary, Woodstock Road, Oxford, OX2 6HE Tel: 0845 6014939
Email: helpline@cbituk.org
Website:www.cbituk.org
Epilepsy Action
"We want to live in a society where everyone understands epilepsy and where attitudes are based on fact not fiction." New Anstey House, Gate Way Drive, Yeadon, LEEDS, LS19 7XY Tel: 0113 210 8800
Email: epilepsy@epilepsy.org.uk
Website: www.epilepsy.org.uk
Headway - the brain injury association
“Our aims are to promote understanding of all aspects of head injury and to provide information, support and services to people who have suffered a head injury, their family and carers.” 4 King Edward Court, King Edward Street, Nottingham. NG1 1EW Tel: 0115 924 0800 Helpline: 0808 800 2244
Email: enquiries@headway.org.uk
Website: www.headway.org.uk
Headway Ireland
The National Association for Acquired Brain Injury in Ireland have offices in Dublin, Cork, Kerry and Limerick. 1-3 Manor Street Business Park, Manor Street, Dublin 7 Tel: (01) 810 2066
www.headwayireland.ie
I-Can
Supports children with speech and language difficulties and their families. 4, Dyer’s Buildings, Holborn, London EC1N 2QP Tel:0845 2254071
www.ican.org.uk
Mencap.
Provides advice and support for people with a learning disability and their families and carers in their own local communities., 123 Golden Lane, London EC1Y 0RT Telephone: 020 7454 0454
www.mencap.org.uk
National Rehabilitation Hospital
The social work dept at the hospital provides information and support to families in Eire. National Rehabilitation Hospital, Rochestown Avenue, Dun Laoghaire, Co. Dublin, Eire. Tel: +353 1 235-5000
www.nrh.ie
National Society for Epilepsy
The National Society for Epilepsy is committed to providing information and support to people with epilepsy, their families, friends and professionals involved in their care. Chesham Lane, Chalfont St Peter, Bucks, SL9 0RJ Tel: 01494 601300
Website: www.epilepsynse.org.uk
Scope
Provide information on any aspect of living with disability. PO Box 833, Milton Keynes MK12 5NY
Tel: 0808 800 3333
www.scope.org.uk
Sibs
Support, advice and information for people who grow up with a brother or sister with a disability , special need or illness. PO Box 50, York, YO1 9ZX Tel: 01904 550029
www.sibs.org.uk
Snap Cymru (Special Needs and Parent Support)
Offers information and support to families of children and young people who have special educational needs in Wales.10 Coopers Yard, Curran Road, Cardiff CF10 5NB Tel: 029 2038 8776
E-mail: centraloffice@snapcymru.org
Web: www.snapcymru.org
Education
Advisory Centre for Education (ACE)
Offers guidance and advice on all aspects of state education.1c Aberdeen Studios, 22 Highbury Grove, London N5 2DQ Helpline: 0808 800 5793
Web: www.ace-ed.org.uk
Beth Wicks Consultancy Ltd
Specialising in the educational needs of children with acquired brain injuries, and other neurological conditions. Independent educational assessments and reports for schools or parents. Consultation and advice for schools and Local Education Authorities. Beth Wicks, Education Consultant, 13 St Helens Road, West Bridgford, Nottingham, NG2 6EX Tel: 0115 9234 861
www.bethwicksconsultancy.com
Centre for Studies on Inclusive Education (CSIE)
Provides information and advice on educating children with special needs in mainstream schools. New Redland, Frenchay Campus, Bristol BS16 1QU Tel: 0117 328 4007
Web: www.inclusion.org.uk
Department for Education and Skills
The parents & carers area of their website has answers to common questions, provides useful information and lets you order SEN publications online.
www.teachernet.gov.uk/
Enquire, Children in Scotland
Provides a national advice service for Special Educational Needs in Scotland. 5 Shandwick Place, Edinburgh EH2 4RG Tel: 0845 123 2303 Helpline Text: (0131) 222 2439
E-mail: info@enquire.org.uk
Web: www.enquire.org.uk
Education Otherwise
Provides support and information for families whose children are being educated outside school. The telephone number gives recorded information on local contacts. PO Box 7420, London N9 9SG Tel: 0870 730 0074
www.education-otherwise.org
Independent Panel for Special Education Advice (IPSEA)
Gives independent advice for parents who are uncertain about, or disagree with, the LEA'S interpretation of their child's special educational needs. 6 Carlow Mews, Woodbridge IP12 1EA Tel: 0800 018 4016 N.Ireland: IPSEA tel.:021890705654
www.ipsea.org.uk
Kids
Services include information on education for under 5's, play, leisure and family support.6 Aztec Row, Berners Road, London N1 0PW Tel: (020) 7359 3635
E-mail: enquiries@kids-online.org.uk
Web: www.kids-online.org.uk
Nisai Virtual Academy (NVA)
NVA is a virtual school that provides education to children (8-18) unable to attend mainstream schools.Milton Road, Harrow HA1 1XB Tel: (020) 8427 9003
E-mail: info@nisai.com
Web: www.nisaivirtualacademy.com
National Portage Association
Provides a home-visiting educational service for pre-school children with additional support needs. PO Box 3075, Yeovil BA21 3FB Tel/Fax: 01935 471641 (Mon & Thur, 9am-1pm)
E-mail: info@portage.org.uk
Web: www.portage.org.uk
Network 81
Gives information, guidance, help and advice on all matters relating to special educational needs and the law. 1-7 Woodfield Terrace, Stansted CM24 8AJ Tel: 0870 770 3306
E-mail: info@network81.org
Web: www.network81.org
Parentscentre
Information and support for parents on how to help with your child's learning, including advice on choosing a school and finding childcare.
www.parentscentre.gov.uk
Parents for Inclusion
Promotes the rights of disabled children to attend their local mainstream school. Unit 2, 70 South Lambeth Road, London SW8 1RL Tel: 0800 652 3145 Helpline
E.Mail: info@parentsforinclusion.org
Web: www.parentsforinclusion.org
Pre-School Learning Alliance
Represents and supports community pre-schools in England. Has regional offices and local branches.69 Kings Cross Road, London WC1X 9LL Tel: 020 7833 0991
E-mail: pla@pre-school.org.uk
Web: www.pre-school.org.uk
Rathbone Special Education Advice Line (SEAL)
Provides support and advice around all aspects of SEN to parents and professionals. Churchgate House, 56 Oxford Street, Manchester M1 6EU Tel: 0800 917 6790 Helpline Tel: 0800 085 4528 Asian Language Service
E-mail: advice@rathbonetraining.co.uk
Web: www.rathbonetraining.co.uk
Scottish Out of School Care Network
Provides information and advice to all involved in out of school care.Level 2, 100 Wellington Street, Glasgow G2 6DH Tel: 0141 564 1284
E-mail: info@soscn.org
Web: www.soscn.org
Schoolhouse
Offers information and support to parents/carers throughout Scotland who seek to take personal responsibility for the education of their children. Schoolhouse Home Education Association
PO Box 18044 Glenrothes Fife KY7 9AD Tel: 01307 463120
www.schoolhouse.org.uk
Skill
National Bureau for Students With Disabilities. Skill is a national charity promoting opportunities for young people and adults with any kind of disability in post-16 education, training and employment across the UK. Chapter House, 18-20 Crucifix Lane, London SE1 3JW Telephone/ Minicom: 020 7450 0620
www.skill.org.uk
Special Educational Needs Advice Centre (SENAC)
Gives independent advice for parents who are uncertain about, or disagree with, the Library and Education Board's interpretation of their child's special educational needs. Graham House, Knockbracken Health Care Park, Saintfield Road, Belfast BT8 8BH Tel: (028) 90705654
E-mail: senadvicecentre@hotmail.com
Steiner (Waldorf) schools
Steiner schools have their own comprehensive and distinctive curriculum and teaching method for pupils up to 18. Steiner Waldorf Schools Fellowship, Kidbrooke Park, Forest Row, East Sussex
RH18 5JB Telephone: 01342–822115
www.steinerwaldorf.org.uk
Counselling and bereavement
British Association for Counselling and Psychotherapy
Provides a list of local member counsellors. B ACP House, 35-37 Albert Street, Rugby CV21 2SG Tel: 0870 443 5252
E-mail: bacp@bacp.co.uk
Web: www.bacp.co.uk
The Compassionate Friends
Supports bereaved families. 53 North Street, Bristol BS3 1EN Tel: 08451 232304
E-mail: info@tcf.org.uk
Web: www.tcf.org.uk
Cruse Bereavement Care
Provides a free counselling service for bereaved people., Cruse House, 126 Sheen Road, Richmond TW9 1UR Tel: 0870 167 1677
E-mail: helpline@crusebereavementcare.org.uk
Web: www.crusebereavementcare.org.uk
Winston's Wish
Works with both children and families on the issues of death and bereavement., The Clara Burgess Centre, Bayshill Road, Cheltenham GL50 3AW Tel: 0845 2030 405 Family Line
E-mail: info@winstonswish.org.uk
Web: www.winstonswish.org.uk
Holidays and Leisure
Action for Leisure
"promoting play and leisure with and for disabled adults and children"
PO Box 9, West Molesey, KT8 1WT Tel: 020 8783 0173
Email: enquiries@actionforleisure.org.uk
Website: www.actionforleisure.org.uk
Calvert Trust
Organisation providing activity holidays specifically for children with a disability, their family and friends. 3 centres in England.
www.calvert-trust.org.uk
Family Holiday Association
Allocates grants to families for one week's holiday of their choice. Applications received only from a health visitor, social worker or caring agency., 16 Mortimer Street, London W1T 3JL Tel: 020 7436 3304
E-mail: info@fhaonline.org.uk
Web: www.fhaonline.org.uk
Listening Books
Provides an audio book library for anyone who has difficulty reading in the usual way due to disability or illness. 12 Lant Street, London SE1 1QH Tel: 020 7407 9417
E-mail: info@listening-books.org.uk
Web: www.listening-books.org.uk
Make a Wish Foundation UK
Offers children aged between 3 and 18 who have a life threatening illness, a special wish., 329-331 London Road, Camberley GU15 3HQ Tel: 01276 24127
E-mail: info@make-a-wish.org.uk
Web: www.make-a-wish.org.uk
National Association of Toy & Leisure Libraries
The national body for toy and leisure libraries in the UK. It can advise you on the nearest toy library. (Playmatters), 68 Churchway, London NW1 1LT Tel: (020) 7255 4600
E-mail: admin@playmatters.co.uk
Web: www.natll.org.uk
Play, leisure and recreation (formerly known as Kids' Clubs Network.)
Provides information, advice, training and development help for parents, schools and employers. 4Children, City Reach, 5 Greenwich View Place, London E14 9NN Tel: (020) 7512 2100
E-mail: information@4children.org.uk
Web: www.4children.org.uk
Starlight Children's Foundation
Offers children aged between 4 and 18 who have a life threatening illness, a special wish, Room PRW1, Macmillan House, Paddington Station, London W2 1HD Tel: 020 7262 2881
E-mail: info@starlight.org.uk
Web: www.starlight.org.uk
Tourism for All UK
Provides information to people with disabilities and older people in relation to accessible accommodation, The Hawkins Suite, Enham Place, Enham Alamein, Andover SP11 6JS Tel: 0845 124 9971 Info Line (Mon & Tue, 9am-5pm; Wed-Fri, 9am-1pm)
E-mail: info@holidaycare.org
Web: www.tourismforall.org.uk
Write Away
Manages a penfriend club for young people and adults, in particular those with special needs and their siblings. 1 Thorpe Close, London W10 5XL Tel: 020 8964 422 5
E-mail: info@write-away.org
Web: www.write-away.org
Equipment and adaptations
Ability net
Offers advice and information, training and suppliers of computers and software for disabled children and adults., PO Box 94, Warwick CV34 5WS Tel: 0800 269545
E-mail: enquiries@abilitynet.org.uk
Web: www.abilitynet.org.uk
Disabled Living Centres Council
Gives details of centres across the country where aids and equipment can be seen and tried out., Redbank House, 4 St. Chad's Street, Cheetham, Manchester M8 8QA Tel: 0161 834 1044
E-mail: dlcc@dlcc.org.uk
Web: www.dlcc.org.uk
Disabled Living Foundation
Provides information about aids and equipment., 380-384 Harrow Road, London W9 2HU Tel: 0845 130 9177 Helpline (Mon-Fri, 10am-4pm) Text: (020) 7432 8009
E-mail: info@dlf.org.uk
Web: www.dlf.org.uk
Muscular Dystrophy Campaign
Can help families whose children have impairments other than muscular dystrophy. They have published an Adaptations manual that can help families through the maze of adaptations.
www.muscular-dystrophy.org/
Whizz Kidz
Provides mobility aids usually lightweight or powered wheelchairs to children with locomotion disabilities., Elliot House, 10-12 Allington Street, London SW1E 5EH Tel: 020 7233 6600
E-mail: info@whizz-kidz.org.uk
Web: www.whizz-kidz.org.uk
Financial
Disability Alliance
Provides information through publications like the Disability Rights Handbook, free briefings, the Rights Advice Line and training., Universal House, 88-94 Wentworth Street, London El 7SA Tel: 020 7247 8763 Rights Advice Line (Mon & Wed, 2-4pm)
E-mail: office.da@dial.pipex.com
Web: www.disabilityalliance.org
Family Fund
Provides grants and information for families looking after severely disabled or seriously ill children under 16., Unit 4, Alpha Court, Monks Cross Drive, Huntington, York YO32 9WN Tel: 0845 13045 42
E-mail: info@familyfund.org.uk
Web: www.familyfund.org.uk
Legal advice
Children's Law Centre
Using the law to promote, protect and realise children's rights., 3rd Floor, Philip House, 123-137 York Street, Belfast BT15 1AB Tel: 0808 808 5678 Advice line for children and young people Tel: (028) 9024 5704
E-mail: info@childrenslawcentre.org
Web: www.childrenslawcentre.org
Disability Law Service
Provides a free law and advisory centre for people with disabilities, their families and carers., Ground Floor, 39-45 Cavell Street, London E1 2BP Tel: 020 7791 9800
E-mail: advice@dls.org.uk
Web: www.dls.org.uk
The Disability Rights Commission (DRC)
An independent body established in April 2000 by Act of Parliament to stop discrimination and promote equality of opportunity for disabled people. DRC Helpline, FREEPOST MID02164, Stratford upon Avon CV37 9BR Telephone: 08457 622 633 Textphone: 08457 622 644
Scottish Child Law Centre
Helps young people, parents and professionals understand laws that affect young people., 54 East Crosscauseway, Edinburgh EH8 9HD Tel: 0808 328 8970 Helpline
E-mail: enquiries@sclc.org.uk
Web: www.sclc.org.uk
General
Asian people with Disabilities Alliance
APDA, founded in 1988, continues to be successfully managed and run by Asian people with in depth knowledge and personal experience of disability and caring. It is a non-governmental community organisation. Suite 6, 4th Floor, Alperton House Bridgewater Road, Wembley, HA0 1EH Tel : 020 8902 2113, 020 8902 2083
Email: apdmcha@aol.com
Website: www.apda.org.uk
British Paediatric Surveillance Unit
The British Paediatric Surveillance Unit facilitates surveillance of rare paediatric conditions with the support of members of the Royal College of Paediatrics. We are the leading paediatric epidemiological surveillance unit in the country if not the world. The data collected is published widely in all the prestigious journals and can be considered the definitive data on a particular rare disease. We have been in existence for over 20 years, are funded by the Department of Health and have now and have facilitated surveillance in over 70 conditions.
Website: http://bpsu.inopsu.com
Completed Studies: http://bpsu.inopsu.com/studies/completed.html
Camphill Communities
Camphill Communities build intentional communities with people of all ages who live with disabilities, recognizing the potential, dignity, spiritual integrity and contribution of each and every individual. 19 South Road, Stourbridge, West Midlands, DY8 3YA
Tel 01384 441680
Email: advisory.service@camphill.org.uk
Website: www.camphill.org.uk
Challenging Behaviour Foundation
The Challenging Behaviour Foundation exists to demonstrate that individuals with severe learning disabilities who are described as having challenging behaviour can enjoy normal life opportunities when their behaviour is properly understood and appropriately managed, and to support parents and carers through education and information to enable this to happen. c/o Friends Meeting House, Northgate, Rochester, ME1 1LS Tel: 01634 838739
Email: info@thecbf.org.uk
Website: www.thecbf.org.uk
Disability Alliance
Disability Alliance (DA), publishers of the Disability Rights Handbook, is regarded as the leading authority on social security benefits for disabled people.
Universal House, 88-94, Wentworth Street, London, E1 7SA Tel: 020 7247 8776
Email: office.da@dial.pipex.com
Website: www.disabilityalliance.org
Disability Now
The UK's biggest selling disability related newspaper, publishing a fortnightly publication which also runs on the website: www.disabilitynow.org.uk. 6 Market Road, London, N7 9PW. Tel: 020 7619 7323
Email: editor@disabilitynow.org.uk
Website: www.disabilitynow.org.uk
ERIC (Education and Resources for Improving Childhood Continence)
Provides advice and information on bedwetting, constipation, soiling and incontinence., 34 Old School House, Britannia Road, Kingswood, Bristol BS15 8DB Tel: 0117 960 3060
E-mail: info@eric.org.uk
Web: www.eric.org.uk
Family Welfare Association
Assists families and individuals to overcome the effects of poverty. Referrals from professionals only., 501-505 Kingsland Road, Dalston, London E8 4AU Tel: 020 7254 6251
E-mail: fwa.headoffice@fwa.org.uk
Web: www.fwa.org.uk
Gingerbread
Puts you in touch with local support groups for lone parents., First Floor, 7 Sovereign Close, London E1W 2HW Tel: 0800 018 4318 Helpline (Mon-Fri, 10am-4pm)
E-mail: office@gingerbread.org.uk
Web:www.gingerbread.org.uk
Joseph Rowntree Foundation
One of the largest social policy research and development charities in the UK. The Homestead
40 Water End, York, North Yorkshire, YO30 6WP, UK Tel: +44 (0)1904 629241
The Mental Health Foundation
Exists to help people survive, recover from and prevent mental health problems. Mental Health Foundation, London Office, 9th Floor, Sea Containers House, 20 Upper Ground, London, SE1 9QB, Tel: 020 7803 1100. Mental Health Foundation, Scotland Office, Merchants House, 30 George Square, Glasgow G2 1EG. Tel: 0141 572 0125.
Mind
Mind works to create a better life for everyone with experience of mental distress.15-19 Broadway, London E15 4BQ T: 020 8519 2122, F: 020 8522 1725
The Patients Association
Gives advice on problems relating to health and healthcare. PO Box 935, Harrow HA1 3YJ Tel: 0845 6084455 (Mon-Fri, 10am-4pm)
Web: www.patients-association.com
RADAR
The UK’s campaigning and advisory disability body, run by and for disabled people. 12 City Forum, 250 City Road, London EC1V 8AF. Tel: 020 7250 3222
Rapid Effective Assistance for Children with potentially Terminal Illness (REACT)
Assists children with life-threatening illness and their families faced with unexpected financial needs., St. Lukes House, 270 Sandycombe Road, Richmond TW9 3NP Tel: (020) 8940 2575
E-mail: react@reactcharity.org
Web:www.reactcharity.org
Working Families
Offers information and advice to working parents and has an established network for parents of disabled children, 1-3 Berry Street, London EC1V 0AA Tel: (020) 7253 7243 Legal Helpline: 0800 013 0313
E-mail: office@workingfamilies.org.uk
Web: www.workingfamilies.org.uk
Young Minds
Committed to improving the mental health of all children and young people.
YoungMinds, 48-50 St John Street, London, EC1M 4DG Tel: 020 7336 8445
Email: enquiries@youngminds.org.uk
Website: www.youngminds.org.uk
Last modified:- 06/01/2006
