Where to find useful information or support with learning disability. Including National and International websites.

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1 Where to find useful information or support with learning disability. Including National and International websites. ACCESSING USEFUL NETWORKS & GROUPS: Networks are an easy way to make contact with experts in the area of care or support you are interested in. Joining a network can help you to gather a lot of very useful information quickly. It can also help you keep up to date with any changes in practice, treatment, services or the law, relating to the support of people with learning disabilities. There are also some Groups like the National Forum who work closely with the Government, providing a voice for people with learning disabilities. Some of these Groups or networks are: The National Forum for People with Learning Difficulties: The National Forum works with the Learning Disability Programme Board and has the job of telling the Government how Valuing People is working for people with learning difficulties. The National Family Carers Network Linking groups and organisations that support families that include an adult with a learning disability. Janet Cobb = provides a variety of networking support including: 1. The UK Learning Disability and Health Network 2. UK CAMHS and Learning Disabilities Network 3. UK Lecturers Network 4. UK Forensic and Learning Disabilities Network 5. UK Epilepsy Network 6. UK Continuing Health Care Network 7. UK Special Interest GP Network 8. National Perinatel and Infant Mental Health Network Rick Robson is the chair of the National Access to Acute Network. This Network is about supporting people with learning disabilities when they access hospital services. See:

2 Mark Bradley runs the National Health Facilitation Network. This network is about supporting people with learning disabilities to access all NHS services. Most of the time, it discusses access to GP services and Health Action Planning. See: The National Network for Palliative care of People with Learning Disabilities (NNPCPLD) seeks to provide training, information and advice to anyone concerned with the palliative and/ or bereavement care needs of people with learning disabilities. Contact Linda McEnhill on The Mental Health in Learning Disabilities Network is an electronic network for anyone interested in the mental health needs of people with learning disabilities To join visit: contact Steve Hardy. The National Network for learning disability nurses Website: and joining address is there is also an group - RNLD's - which has around 300 members. The network is for advice, practice discussion, networking. To join go to ACCESSIBLE INFORMATION Accessible Health Information Change Picture Bank Confederation of Transcribed Information Services (COTIS) Easy Information Photosymbols (pictures) Real Voice Media Royal National Institute for the Blind Accessible Information

3 ADVOCACY AND SELF HELP ORGANISATIONS Central England People First Citizen Advocacy Information and Training Disability Rights Commission Disabled Peoples' International Disabled Peoples' International is a network of national organizations or assemblies of disabled people, established to promote human rights of disabled people through full participation, equalization of opportunity and development. Heart and Soul One For Us People First (National) Plain Facts Magazine Samaritans Values Into Action ISSUES AROUNG AGEING Age Concern England Ageing with Developmental Disabilities tigger.uic.edu/orgs/rrtcamr Centre for Policy on Ageing Counsel and Care ANXIETY DISORDERS Anxiety Community First Steps Obsessive Compulsive Disorder National Phobics Society No Panic Triumph Over Phobia ADHD Attention Deficit Hyperactive Disorder Attention Deficit Disorder Association (USA)

4 AUTISTIC SPECTRUM DISORDERS Asperger s Syndrome Asperger s Syndrome For information and training about Asbergers Syndrome Contact Michelle Evans [email protected] - For children contact Karen Penlington [email protected] Autism Connect Autism Europe Autism Independent UK Autism in Mind Autism Network International Centre For The Study Of Autism National Autistic Society (UK) Looking Up (Monthly International Autism Newsletter) The Maze: Autism Links & Information CARERS Caring about Carers Carer s UK Princess Royal Trust for Carers Have a chat room where you can talk with other carers and a message board. People get together at 7pm on the internet every evening. Tel: CEREBRAL PALSY Scope CHALLENGING BEHAVIOUR Challenging Behaviour Foundation Institute of Applied Behaviour Analysis

5 CHILDREN S ISSUES Childline NSPCC CHILD AND ADOLESCENT MENTAL HEALTH About Our Kids Centre for Adolescent & Family Studies Child, Adolescent & Family Mental Health Research Centre Young Minds COMMUNICATION Makaton - Signalong - Communication Matters Breaking Barriers - This site is one of the outcomes of meetings with alternative communication users. CONTINENCE Association For Continence Advice DEAF ISSUES Royal National Institute For Deaf People DEPRESSION Defeat Depression Depression Alliance

6 DISABILITY GENERAL Abilitynet British Council of Disabled People Disability Rights Commission Disabled Living Foundation Learning Disabilities EPILEPSY British Epilepsy Association Epilepsy Action (British Epilepsy Association) GOVERNMENT DEPARTMENTS Department of Health Valuing People HEALTH ISSUES FOR PEOPLE WITH LEARNING DISABILITIES Elfrida Society Health Evidence Bulletins for Learning Disability Intellectual Disability Health Information My Health My Choice HUMAN RIGHTS Human Rights Act Human Rights Unit Liberty Liberty On Line Mental Disability Rights International VIA (Values Into Action) Works for the rights of people with learning difficulties. Tel: e mail [email protected]

7 PROMOTING INCLUSION AND CHALLENGING SEGREGATION Inclusion International Inclusion Network LEARNING DISABILITY GENERAL Association of Practitioners in Learning Disabilities British Institute Of Learning Disabilities Estia Centre Foundation for People with Learning Disabilities Kings Fund Mencap Learning Disabilities UK Learning Disability History (Life in institutions) National Electronic Library for Learning Disability Norah Fry Research Centre North West Training and Development Team Paradigm useful website for all issues MENTAL HEALTH ISSUES General & LD Mental Health Care Mental Health Foundation Mental Health Internet Resources Mental Health Matters Mental Health Media Mind Mind Out for Mental Health National Electronic Library for Mental Health

8 National Institute for Mental Health England (NIMHE) Primary Care Mental Health and Education Sainsbury s Centre for Mental Health SANE Estia Centre Institute for Dual Diagnosis National Association for the Dually Diagnosed (NADD) OCCUPATIONAL THERAPY British Association of Occupational Therapists PERSON CENTRED PLANNING Circles Around Dundee NWTDT (North West Training and Development Team) Person Centred Planning Educational Site SENSORY IMPAIRMENTS National Deaf Services Royal National Institute for Deaf People Royal National Institute of the Blind SENSE SYNDROMES Angelman s Syndrome Birth Defects Foundation Cornelia de Lange Syndrome Down s Syndrome Association (UK) Down s Syndrome Association (USA) Dysmorphic Syndromes

9 Fragile X Research Foundation Fragile X Society Genes & Disease Klinefelter s Syndrome Prada Willi Association (UK) Prada Willi Association USA Rare Genetic Diseases in Children Rett s Syndrome Association (UK) Smith-Magenis Syndrome Tourette s Syndrome Tuberous Sclerosis Association Turner s Syndrome UK Turner s Syndrome (USA) UK Resources for Down s syndrome Williams Syndrome STROKES Different Strokes Support for stroke survivors. Different Strokes has contacts in most areas of the UK, they produce regular newsletters, very positive outlook. 9 Canon Court, Wolverton Mill, Milton Keynes MK12 5NF Tel: Fax: [email protected] Many of the above contacts and links etc have been taken from a variety of referenced sources. In particular Cath Scott, Community Nurse for People with Learning Disabilities WEST SUSSEX HEALTH AND SOCIAL CARE NHS TRUST, NORTHERN LOCALITY LIST OF CLINICAL SYNDROMES LINKED TO LEARNING DISABILITIES AND THE HEALTH ISSUES THEY PRESENT.