Useful links

UK Wide Organisations

PAMIS
Provide support for people with profound and multiple learning disabilities (PMLD), their family and carers and interested professionals.

British Lung foundation information hub
This hub has been designed to help families access trusted information about how children’s lungs develop, symptoms of respiratory problems and a range of children’s lung conditions.

Citizens Advice Bureau
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.

Contact
A national charity for families with disabled children.

Counselling Directory
A comprehensive database of UK counsellors and psychotherapists, with information on their training and experience, fees and contact details.

Disabled Living
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

Family Fund
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.

Foundation for People with Learning Disabilities (FPLD)
To help make things better for people with learning disabilities. changing

Grants for Home Stair lifts
Disabled facilities grants for stair lifts – including details of how and where to apply

Netbuddy
Online community forum (which is now incorporated with SCOPE) for people with first-hand experience of learning disability, autism and special needs.

Paediatric Intensive Care Unit
Paediatric Critical Care Unit at the Royal Hospital for Sick Children in Edinburgh

Rett UK
UK charity supporting families affected by Rett syndrome. Excellent resource around communicating with children with complex needs.

Royal College of Speech and Language Therapists
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 – the care for individuals with communication, swallowing, eating and drinking difficulties.

We are the professional body for speech and language therapists in the UK; providing leadership and setting professional standards.

Scope: About disability
Scope is a charity that exists to make this country a place where disabled people have the same opportunities as everyone else.

Sibs
For brothers and sisters of disabled children and adults

SOFT UK- Support Organisation for Trisomy 13/18
For UK families affected by Patau’s syndrome (trisomy 13), Edwards’ syndrome (trisomy 18) and related disorders.

SWAN UK
SWAN UK is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions.

Tired Out
Tired Out supports families raising disabled children to find help and information about sleep.

Unique -The rare chromosome support group
To inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness.

Carers Trust
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 from their site for carers

Together for Short Lives
UK charity for all children with life-threatening and life-limiting conditions

Well Child
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.

SIBS
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.

Scotland Wide Organisations

The Mental Health Foundation Scotland, Digital Bricks Learning and Children’s Health Scotland have created a Professional Learning Resource for Scottish Government in Mental Health and Wellbeing.  It has been designed for all staff working in schools across Scotland. It is open access and available to anyone who may find it of benefit.

The Paediatric End of Life Care Network (PELiCaN) Managed Clinical Network 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.

If you would like to contact the PELiCaN team please email nss.pelican@nhs.scot

The Office for Rare Conditions 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.

Children’s Health Scotland (formerly Action for Sick Children) Dedicated to informing, promoting and campaigning on behalf of the needs of ALL sick children and young people within our healthcare system.

Capability Scotland Campaigns with, and provides education, employment and care services for disabled children and adults across Scotland.

CHAS Provides the only hospice services in Scotland for children and young people who have life-shortening conditions

Children and Young People’s Allergy Network Scotland (CYANS) Supporting the development of allergy care and improve access to allergy services for children, young people and their families across Scotland.

Children and Young People’s Services Managed Knowledge Network (NES) The MKN provides information, resources and education for NHS Scotland staff working with children and young people.

Children in Scotland The umbrella body for the children’s sector, representing children’s services organisations and individuals across the voluntary, private and public sectors.

Enquire: the Scottish Advice Service for Additional Support for Learning Scottish advice service for additional support for learning

for Scotland’s Disabled Children (fSDC)
Aims to turn the good intentions of policy and legislation into better lives for families with disabled children in four key areas:

Kindred
Kindred provides advocacy and information on services available to children with additional support needs and their carers.

Lead Scotland
Set up to widen access to learning for disabled young people and adults and carers across Scotland.

Long Term Conditions Alliance Scotland (LTCAS)
A national third sector health and social care intermediary

Mindroom
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.

Carers Trust Scotland –  Aims to support carers across Scotland

ALISS (A Local Information System for Scotland) is a service to help you find help and support close to you when you need it most

NHS 24
Find your local services

NHS Scotland

Scottish National Managed Clinical Network for Acquired Brain Injury (ABI)

Scottish Spina Bifida Association

Self-directed Support in Scotland
One-stop-shop for information about Self-directed Support for people who use social care services and health and social care professionals.

Sleep Scotland
A charity providing support to families of children and young people with additional support needs and severe sleep problems

The Scottish Centre for Children with Motor Impairments
Providing educational and therapy services for children and young people throughout Scotland affected by cerebral palsy and related conditions

iHub – Anticipatory Care Planning It’s 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.

Young Scot – National Entitlement Card The Young Scot National Entitlement Card (Young Scot NEC) is free of charge to 11 to 26-year-olds  living in Scotland.

Getting it Right for Every Child (GIRFEC) 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.

Young Carers Grant Young Carer Grant is a yearly payment of £359.65 for young carers in Scotland. To be able to get Young Carer Grant, you must be 16, 17 or 18 years old.

Regional Organisations

Parent to Parent
Support for families caring for a child with additional needs living in Angus, Dundee and Perth & Kinross

Parents Inclusion Network
Helping parents and carers in Dumfries & Galloway share information and advice on disability issues

Playback Ice
Playback, ICE aims to support practitioners to deliver a first class 21st 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 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.

International Organisations

EACH – European Association for Children in Hospital
Involved in the welfare of all children before, during or after a stay in hospital.

World health Organisation (WHO)
To direct and coordinate international health within the United Nations’ system.