PAMIS<\/a><\/strong> British Lung foundation information hub<\/a><\/strong> Citizens Advice Bureau<\/a><\/strong> Contact<\/a><\/strong> Counselling Directory<\/a><\/strong> Disabled Living<\/a><\/strong> Family Fund<\/a><\/strong> Foundation for People with Learning Disabilities (FPLD)<\/a><\/strong> Grants for Home Stair lifts<\/a><\/strong> Netbuddy<\/strong><\/a> Paediatric Intensive Care Unit<\/a> Rett UK<\/a><\/strong> Royal College of Speech and Language Therapists<\/a><\/strong> We are the professional body for speech and language therapists in the UK; providing leadership and setting professional standards.<\/p>\n\n\n\n Scope: About disability<\/a><\/strong> Sibs<\/a><\/strong> SOFT UK- Support Organisation for Trisomy 13\/18<\/a><\/strong> SWAN UK<\/a><\/strong> Tired Out<\/a><\/strong> Unique -The rare chromosome support group<\/a><\/strong> Carers Trust<\/a><\/strong> Together for Short Lives<\/a><\/strong> Well Child<\/a><\/strong> SIBS<\/strong><\/a> The Mental Health Foundation Scotland, Digital Bricks Learning and Children\u2019s Health Scotland have created a Professional Learning Resource<\/a> <\/strong>for Scottish Government in Mental Health and Wellbeing.<\/strong> It has been designed for all<\/strong> staff working in schools across Scotland. It is open access and available to anyone who may find it of benefit.<\/p>\n\n\n\n The Paediatric End of Life Care Network<\/strong><\/a> (PELiCaN) Managed Clinical Network<\/a><\/strong> was set up in 2019. The network aims to support delivery and improve access to high quality, patient and family centred, end of life care for children and young people; regardless of age, ethnicity or geographical location.<\/p>\n\n\n\n If you would like to contact the PELiCaN team please email nss.pelican@nhs.scot<\/strong><\/a><\/p>\n\n\n\n The Office for Rare Conditions<\/strong><\/a> offer information and support to those affected by conditions that are not common or may not yet even be diagnosed.Further information, including links can be located here.<\/strong><\/a><\/p>\n\n\n\n Children’s Health Scotland (formerly Action for Sick Children) <\/a><\/strong>Dedicated to informing, promoting and campaigning on behalf of the needs of ALL sick children and young people within our healthcare system.<\/p>\n\n\n\n Capability Scotland<\/a><\/strong> Campaigns with, and provides education, employment and care services for disabled children and adults across Scotland.<\/p>\n\n\n\n CHAS<\/a><\/strong> Provides the only hospice services in Scotland for children and young people who have life-shortening conditions<\/p>\n\n\n\n Children and Young People’s Allergy Network Scotland (CYANS)<\/a><\/strong> Supporting the development of allergy care and improve access to allergy services for children, young people and their families across Scotland.<\/p>\n\n\n\n Children and Young People’s Services Managed Knowledge Network (NES)<\/a><\/strong> The MKN provides information, resources and education for NHS Scotland staff working with children and young people.<\/p>\n\n\n\n Children in Scotland<\/a><\/strong> The umbrella body for the children\u2019s sector, representing children’s services organisations and individuals across the voluntary, private and public sectors.<\/p>\n\n\n\n Enquire: the Scottish Advice Service for Additional Support for Learning<\/a><\/strong> Scottish advice service for additional support for learning<\/p>\n\n\n\n for Scotland’s Disabled Children (fSDC)<\/strong><\/a> Kindred<\/a><\/strong> Lead Scotland<\/a><\/strong> Long Term Conditions Alliance Scotland (LTCAS)<\/a><\/strong> Mindroom<\/a><\/strong> Carers Trust Scotland<\/a><\/strong> – Aims to support carers across Scotland<\/p>\n\n\n\n ALISS (A Local Information System for Scotland)<\/strong><\/a> is a service to help you find help and support close to you when you need it most<\/p>\n\n\n\n NHS 24<\/a><\/strong> NHS Scotland<\/a><\/strong><\/p>\n\n\n\n Scottish National Managed Clinical Network for Acquired Brain Injury (ABI)<\/a><\/strong><\/p>\n\n\n\n Scottish Spina Bifida Association<\/a><\/strong><\/p>\n\n\n\n Self-directed Support in Scotland<\/a><\/strong> Sleep Scotland<\/a><\/strong> The Scottish Centre for Children with Motor Impairments<\/a><\/strong> iHub – Anticipatory Care Planning<\/a><\/strong> It\u2019s about knowing how to use services better and it helps people make choices about their future care. Planning ahead can help the individual be more in control and able to manage any changes in their health and wellbeing.Many people with long term conditions or chronic health problems can benefit from having an Anticipatory Care Plan.<\/p>\n\n\n\n Young Scot – National Entitlement Card<\/strong><\/a> The Young Scot National Entitlement Card (Young Scot NEC) is free of charge to 11 to 26-year-olds living in Scotland.<\/p>\n\n\n\n Getting it Right for Every Child (GIRFEC)<\/strong><\/a> Getting it right for every child (GIRFEC) is our commitment to provide all children, young people and their families with the right support at the right time. This is so that every child and young person in Scotland can reach their full potential.<\/p>\n\n\n\n Young Carers Grant<\/a> <\/strong>Young Carer Grant is a yearly payment of \u00a3359.65 for young carers in Scotland. To be able to get Young Carer Grant, you must be 16, 17 or 18 years old.<\/p>\n\n\n\n Parent to Parent<\/a><\/strong> Parents Inclusion Network<\/a><\/strong> Playback Ice<\/a><\/strong>
Provide support for people with profound and multiple learning disabilities (PMLD), their family and carers and interested professionals.<\/p>\n\n\n\n
This hub has been designed to help families access trusted information about how children\u2019s lungs develop, symptoms of respiratory problems and a range of children\u2019s lung conditions.<\/p>\n\n\n\n
Providing expertise on things like management and fundraising, resources such as IT support, tools and training to support advice giving, and help with running campaigns.<\/p>\n\n\n\n
A national charity for families with disabled children.<\/p>\n\n\n\n
A comprehensive database of UK counsellors and psychotherapists, with information on their training and experience, fees and contact details.<\/p>\n\n\n\n
Disabled Living is a charity which provides impartial information about equipment (assistive technology) and services for disabled adults, children, older people and the professionals who support them<\/p>\n\n\n\n
The Family Fund is the largest provider of grants to low-income families raising disabled or seriously ill children and young people across the UK.<\/p>\n\n\n\n
To help make things better for people with learning disabilities. changing<\/p>\n\n\n\n
Disabled facilities grants for stair lifts \u2013 including details of how and where to apply<\/p>\n\n\n\n
Online community forum (which is now incorporated with SCOPE) for people with first-hand experience of learning disability, autism and special needs.<\/p>\n\n\n\n
<\/strong>Paediatric Critical Care Unit at the Royal Hospital for Sick Children in Edinburgh<\/p>\n\n\n\n
UK charity supporting families affected by Rett syndrome. Excellent resource around communicating with children with complex needs.<\/p>\n\n\n\n
The Royal College of Speech and Language Therapists (RCSLT) was established on 6 January 1945 to promote the art and science of speech and language therapy \u2013 the care for individuals with communication, swallowing, eating and drinking difficulties.<\/p>\n\n\n\n
Scope is a charity that exists to make this country a place where disabled people have the same opportunities as everyone else.<\/p>\n\n\n\n
For brothers and sisters of disabled children and adults<\/p>\n\n\n\n
For UK families affected by Patau’s syndrome (trisomy 13), Edwards’ syndrome (trisomy 18) and related disorders.<\/p>\n\n\n\n
SWAN UK is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions.<\/p>\n\n\n\n
Tired Out supports families raising disabled children to find help and information about sleep.<\/p>\n\n\n\n
To inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness.<\/p>\n\n\n\n
Carers Trust Scotland is the largest provider of comprehensive carers support services in Scotland. We reach around 30,000 adult carers and 2,400 young carers from all groups and communities, through a unique network of independent carers centres and young carers services throughout Scotland.We work with these centres to improve support, services and recognition for carers in communities across Scotland. Key facts<\/a> <\/strong>from their site for carers<\/p>\n\n\n\n
UK charity for all children with life-threatening and life-limiting conditions<\/p>\n\n\n\n
Providing practical and emotional support to seriously ill children, young people and their families, enabling them to leave hospital and live life in their own homes.<\/p>\n\n\n\n
Sibs exists to support people who grow up with or have grown up with a disabled brother or sister. It is the only UK charity representing the needs of over half a million young siblings and over one and a half million adult siblings.<\/p>\n\n\n\nScotland Wide Organisations<\/h2>\n\n\n\n
Aims to turn the good intentions of policy and legislation into better lives for families with disabled children in four key areas:<\/p>\n\n\n\n
Kindred provides advocacy and information on services available to children with additional support needs and their carers.<\/p>\n\n\n\n
Set up to widen access to learning for disabled young people and adults and carers across Scotland.<\/p>\n\n\n\n
A national third sector health and social care intermediary<\/p>\n\n\n\n
Offer one-to-one help and support from experienced professionals by phone, email and in person to improve the lives of those affected by learning difficulties.<\/p>\n\n\n\n
Find your local services<\/p>\n\n\n\n
One-stop-shop for information about Self-directed Support for people who use social care services and health and social care professionals.<\/p>\n\n\n\n
A charity providing support to families of children and young people with additional support needs and severe sleep problems<\/p>\n\n\n\n
Providing educational and therapy services for children and young people throughout Scotland affected by cerebral palsy and related conditions<\/p>\n\n\n\nRegional Organisations<\/h2>\n\n\n\n
Support for families caring for a child with additional needs living in Angus, Dundee and Perth & Kinross<\/p>\n\n\n\n
Helping parents and carers in Dumfries & Galloway share information and advice on disability issues<\/p>\n\n\n\n
Playback, ICE aims to support practitioners<\/em> to deliver a first class 21st<\/sup> century curriculum within a culture of self-improvement and continuous professional development. Our resources support the development of children and young people’s wellbeing and essential skills<\/em> in order for them to be better prepared for learning, life and work, engaged citizens, lifelong responsible learners, who are self-aware, caring and connected to others.<\/p>\n\n\n\nInternational Organisations<\/h2>\n\n\n\n