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Useful links

Quick linksCharities for specific conditions | Other Contacts | Environmental Control Services (Surrey & Sussex) | Other AAC Specialist Services

Charities for specific conditions


 

Ataxia UK

www.ataxia.org.uk

Ataxia UK provides information, advice and support to people affected by ataxia. They also support medical research into causes and potential therapies

Dystonia Society

www.dystonia.org.uk

Dystonia Society support for people with dystonia, and their families. They promote awareness, publish literature and are involved in medical research and welfare.

Headway – the brain injury association

www.headway.org.uk

Headway is the UK-wide charity that works to improve life after brain injury. Through its network of more than 125 groups and branches across the UK, it provides support, services and information to brain injury survivors, their families and carers, as well as to professionals in the health and legal fields.

Huntington’s Disease Association

www.hda.org.uk

The Huntington’s Disease Association supports families affected by Huntington’s disease. They are a client organisation which provides care, advice, support and education to families and professionals caring for someone with the illness, the individual themselves, and those at risk of developing it.

Motor Neurone Disease Association

www.mndassociation.org

The Motor Neurone Disease Association supports people affected by motor neurone disease to ensure that they receive the highest standards of care in order to achieve quality of life.  They provide a helpline, information, equipment loan, financial support, a network of regional care advisers, local branches and volunteer visitors and fund research into the causes of MND.

Multiple Sclerosis Society

www.mssociety.org.uk

The Multiple Sclerosis Society provides support and information for people affected by multiple sclerosis through a network of branches, a helpline and a range of publications. They are involved in research into multiple sclerosis and policy work and campaigns on MS issues. They also provides respite and holiday homes.

Multiple Sclerosis Trust

www.mstrust.org.uk

The Multiple Sclerosis Trust supports people with multiple sclerosis, their families and friends, and the health and social care professionals who work with them. They provide information about multiple sclerosis; education for nurses and other professionals; undertake research which is relevant to people who live with multiple sclerosis; and support multiple sclerosis specialist nurses

Multiple System Atrophy Trust

www.msatrust.org.uk

The Multiple System Atrophy Trust provides information and support to people living with multiple system atrophy and their families.  They raise awareness of the condition and its treatment, especially among healthcare professionals; and are involved in medical research into causes of MSA, potential therapies and ultimately its cure.

Muscular Dystrophy UK

www.musculardystrophyuk.org

Muscular Dystrophy UK is the charity for individuals and families living with muscle-wasting conditions.

Parkinson’s UK

www.parkinsons.org.uk

Parkinson’s UK provides support, information and advice to people with Parkinson’s and their carers and families. They also fund medical research into causes of Parkinson’s and potential therapies

Royal National Institute of the Blind (RNIB)

www.rnib.org.uk

The RNIB supports people affected by sight loss.  They provide care, advice, support and education to people affected by sight loss and campaign to make society a more inclusive place.

Scope

www.scope.org.uk

Scope exists to make this country a place where disabled people have the same opportunities as everyone else. With your support, we'll keep driving change across society until this country is great for everyone.

The Stroke Association

www.stroke.org.uk

The Stroke Association is the UK’s leading charity dedicated to conquering stroke. We provide information, support and advice to help stroke survivors make the best recovery they can.

 

Other useful contacts


 

The Advocate’s Gateway

https://www.theadvocatesgateway.org/

Useful information, services and resources, especially in relation to the use of communication aids in the justice system.

Call Scotland

http://www.callscotland.org.uk/home/

CALL Scotland is a Research and Development centre as well as a working Service unit. Both elements are necessary and important – they inform, enrich and support each other.

CALL has a practical hands-on approach to working with individual pupils in schools. As a result, CALL research and development work is always firmly ‘grounded’ in the real needs of pupils, teachers and families. At the same time, the academic and specialist technological knowledge developed from research and development supports the centre’s service work.

Communication Matters

www.communicationmatters.org.uk

Communication Matters is a UK charity that promotes the best possible communication for people with complex communication needs.

A series of 8 leaflets on AAC produced by Communication Matters can be found at http://www.communicationmatters.org.uk/page/focus-on-leaflets

Communication Matters are also developing free online resource called AAC E-Learning which can be found on http://www.aacelearning.org.uk/.

Disability Matters

https://www.disabilitymatters.org.uk

Disability Matters offers free resources to support those who work, volunteer or engage with disabled children and young people (from 0 to 25 years) and their families. It seeks to address the barriers that make society disabling. The resources have been developed by disabled young people, parents, carers and other experts.  Disability Matters aims include raising the profile and awareness of disability and issues that affect everyday life and to help young people overcome the social barriers they face. They also aim to support people who work with disabled young people, including employers, to better support and respond to needs of disabled young people and their families.

ISAAC (International Society for Augmentative and Alternative Communication)

www.isaac-online.org

ISAAC works to improve the lives of children and adults who use AAC. Their vision is that AAC will be recognized, valued and used throughout the world. ISAAC’s mission is to promote the best possible communication for people with complex communication needs. ISAAC accomplishes this by sharing information and promoting innovative approaches to research, technology and literacy through AAC. Activities include hosting the ISAAC biennial conference, sponsoring projects, and offering awards and scholarships.

NHS England

http://www.england.nhs.uk/

NHS England is a commissioning board for health services across England. Its ambition is to place the clients and the public at the heart of everything we do in the NHS.

1Voice – Communicating Together   

www.1voice.info

1voice is a charity that organises national and regional events for people who use communication aids, their families and professionals working with them.

SpeechBubble

www.speechbubble.org.uk

SpeechBubble provides information on different low and high tech communication aids.

Understand Me - The Communication Library

West Sussex County Council Library Services - Understand Me - The Communication Library provide a range of free resources to anyone who needs help with communication.  All you need is a library card.

www.westsussex.gov.uk/understandme

 

Environmental Control Services for Surrey and Sussex (incl. Brighton & Hove)


 

The Assistive Technology Service (Surrey and West Sussex)

https://www.stgeorges.nhs.uk

The Assistive Technology Service provides electronic assistive technology to severely disabled people in Surrey and West Sussex. It is part of St George’s University Hospitals NHS Foundation Trust based at Queen Mary’s Hospital Roehampton London SW15.

Contact
Clare Oakley: clare.oakley@stgeorges.nhs.uk
Tel: 020 8487 6084 / 020 8487 6085

Environmental Control Services (East Sussex)

https://www.kmpt.nhs.uk/

They provides electronic assistive technology to severely disabled people in the East Sussex and Brighton & Hove region.

Contact
Kathryn Thom, clinical manager: kathryn.thom@kmpt.nhs.uk.
Tel: 01634 833923

 

Other AAC Specialist Services (Hubs)


South of England

Kent and Medway Communication and Assistive Technology Service (KM CAT) - Adults

http://www.ekhuft.nhs.uk/acat

Hub covering: Kent and Medway
Department of Medical Physics, Kent and Canterbury Hospital, Ethelbert Road, Canterbury CT1 3NG

Contact
Ladan Najafi
Email: acat.service@nhs.net
Tel: 01227 864 083

Kent and Medway Communication and Assistive Technology Service (KM CAT) - Children & Young People

http://www.kelsi.org.uk/

Hub covering: Kent and Medway
Kent Communications and Assistive Technology Service, The Old Railway School, Wainwright Place, Ashford TN24 0PF

Contact:
Sarah Lloyd-Cocks
Email: kcht.cat-admin@nhs.net
Tel: 01233 629 859

ACE Centre (Oxford)

http://www.acecentre.org.uk

Hub covering: Wessex & Thames Valley, Adults and Children and young people
Jericho Farm Barns, Yarnton Road, Cassington, Oxfordshire OX29 4SZ

Contact:
Lisa Farrand
Email: lfarrand@acecentre.org.uk
Tel: 0161 358 0151

Bristol Communication Aid Service (BCAS)

http://www.nbt.nhs.uk/bcas

Hub covering: South West, Adults and Children and Young People
Bristol Centre for Enablement, Highwood Pavilions, Jupiter Road, Patchway, Bristol BS34 5BW

Contact:
Rose Hiles, office administrator
Email: cacadmin@nbt.nhs.uk
Tel: 0117 340 3946

 

London

Compass Assistive and Rehabilitation Technology Service

http://www.rhn.org.uk/compass

Hub covering: West London, Adults
Royal Hospital for Neuro-Disability, West Hill, Putney, London SW15 3SW

Contact:
Gary Derwent
Email: compass@rhn.org.uk
Tel: 020 8780 4500 ext.5099

Wolfson Neuro-Disability Team - Communication Service

http://www.gosh.nhs.uk/

Hub covering: London, Children and Young People
Great Ormond Street Hospital for Children, Great Ormond Street, London WC1N 3JH

Contact:
Tom Griffiths
Email: tom.griffiths@gosh.nhs.uk
Tel: 020 7405 9200 ext 1144

Guy's and St Thomas' Assistive Communication Service (GSTT ACS)

Adults: www.guysandstthomas.nhs.uk/ACS
Children: www.evelinalondon.nhs.uk/ACS

Hub covering: London, North East and South East, Adults and Children and Young People
Bowley Close Regional Specialist Rehabilitation Centre, Farquhar Road, London SE19 1SZ

Contact:
Charlotte Sax (SLT) and/or Wendy Garnett (OT)
Email: gst-tr.acs-hub@nhs.net
Tel: 020 3049 7751
Fax: 020 3049 7703

Assistive Communication Service (ACS)

http://www.clch.nhs.uk/

Hub covering: London, Adults and Children and Young People

Contact:
Nikky Steiner (Principal Speech and Language Therapist)
Email: nikky.steiner@clch.nhs.uk

Contact the service:
Tel: 020 8102 4067