You have the right to high quality healthcare which meet your needs and supports you to live your life to the full.
To help you understand what that means in practice we've pulled together a list of information and websites that explain what your rights are, how to use the NHS and where to go for further support.
1. General Health
A book about me
The purpose of this booklet is for others to find out crucial information about a child or young person with high support needs in a short time-frame.
A guide for women with autism when engaging with health professionals
This leaflet outlines some common challenges experienced when engaging with health professionals and suggests some potentially helpful strategies.
Learning Disability A-Z
A complete guide to learning disabilities, topical issues and sources of support.
An Ordinary Life
This booklet contains interviews with the families of people who have complex health needs. This booklet aims to gives families in similar positions a chance to reflect on their own experiences and ideas on how to make life more ‘ordinary’.
Autism Transition Toolkit
This toolkit, produced by the Autism Education Trust, is a summary of common issues surrounding transition for young people on the autism spectrum, as well as a guide to the considerations that should be taken by those supporting them.
Best Interests Decision-Making
This website is designed to help staff working in health and social care (including those in private and voluntary sectors) as well as unpaid carers, to improve the way they determine the best interests of people who lack capacity to make a decision.
CHIVA
CHIVA works with HIV positive children and young people. Its website incorporates information for non-health professionals, parents, and young people who live in a family where there is HIV.
Coram Children's Legal Centre
Leaflet on young people and medical treatment.
Ensuring quality services for children and adults with behaviour that challenges
NHS England and the Local Government Association have published ‘Ensuring quality services’ a new ‘core principles’ publication aimed at helping commissioners to ensure service delivery that meets the needs of people with learning disabilities and/or autism who display or are at risk of displaying behaviour that challenges.
Epilepsy Education for Schools programme
Young Epilepsy have free online training courses for teachers and students as part of their Epilepsy Education for Schools programme.
Five good communication standards: Reasonable adjustments to communication that individuals with learning disability and/or autism should expect in specialist hospital and residential settings
The five good communication standards are intended as a practical resource to support families, carers, staff, professionals, providers and commissioners to make a difference to the lives of individuals using specialist residential services. The guidance covers:
- What good communication looks like
- Whether good communication is happening
- About useful resources to promote good communication
Getting it right
Getting it right is a campaign run by a group of health professionals to improve healthcare for people with a learning disability.
GMC's Learning disability website
The General Medical Council (GMC) has a website dedicated to helping doctors provide better care for people with learning disabilities.
Guide to producing health information for children and young people
This guide shows the considerable efforts that have been made in providing health
information for children and young people and recognises that children and young people can really help develop the information they need and are essential participants in this work.
Health Talk Online
Health Talk Online is a website by DIPEx charity. Health Talk Online and its sister website, Youth Health Talk, let you share in more than 2,000 people's experiences of over 60 health-related conditions and illnesses. You can watch video or listen to audio clips of the interviews, read about people's experiences if you prefer and find reliable information about specific conditions, treatment choices and support.
Healthwatch Children Toolkit and Resources Guide
Healthwatch England has produce a toolkit and resources guide on how to create a children and young people friendly local Healthwatch.
Improving Health and Lives Learning Disabilities Observatory
Improving Health and Lives works to keep watch on the health of people with learning disabilities and the health care they receive. Their website provides lots of information.
Just Normal Young People: Supporting young people living with HIV in their transition to adulthood.
New report looking at “how young people living with HIV make the transition from childhood to adulthood and, in particular, changes in services and support for young people that occur during this time”.
Knowledge hub - Transitions to adulthood
The transitions to adulthood hub brings together a range of resources and evidence relating to young people's transition process into the adult world. It is constantly updated with new resources.
Live with a healthy heart
The British Heart Foundation have produced a DVD and booklet about keeping your heart healthy for people with learning disabilities.
SeeAbility
Information on eye care and vision for people with learning disabilities.
Making Sense of Sensory Behaviour
This booklet is designed to help people become more aware of the effects of sensory information and how it may impact on life skills and behaviour. By thinking and planning positive sensory experiences we can help understand how to best manage situations some young people find over/under-whelming. Avoiding a disliked or upsetting sensory experience may help the young person with the sensory issue calm down and be able to take part in daily tasks.
Moving On Up
The Moving On Up website, developed for disabled young people from BME communities, has lots of information about health and wellbeing.
Moving on Well Resource Pack
The Pack is available to anyone interested in improving transition and raising the aspirations and achievements of disabled young people and young people with with complex health needs.
NHS Continuing Healthcare
EasyRead guide for people with learning disabilities, family carers and anyone who helps a person with learning disabilities.
Putting the UK Vision Strategy into action for children and young people
These guidelines are intended for those responsible for commissioning and providing services for children and young people and their families. They will assist with the interpretation and implementation of the UK Vision Strategy across health, education and social care.
What do I need to know about NHS Continuing Healthcare?
This booklet provides information for families of people with learning disabilities about the scope and process of NHS continuing healthcare, together with possible implications and questions they may want to ask.
Self-injurious behaviour in children with an intellectual disability
This guide has been written to help parents to understand what self-injury is, what the causes are and which interventions are effective. The briefing focuses on children with profound to moderate intellectual disability, who may also have autism spectrum disorder or a genetic syndrome. The new infographic explains how to use the FLACC Pain Scale – a system that can help parents and professionals assess pain levels in children who have limited or no expressive communication.
Transition to adult care: Ready Steady Go
Ready Steady Go is a good transition health model by University Hospital Southampton.
Toilet training for children with autism and intellectual disabilities
This guide looks at the effects of developmental delay on toilet training as well as the physical, behavioural and sensory issues. It gives practical guidance on deciding on and implementing an appropriate toilet training programme. The information contained in the guide has been illustrated in a new easy to follow infographic, making it much easier and quicker for parents and carers to find the advice on toilet training that they are looking for.
The Common-Sense Approach to Moving and Handling of Disabled Children and Young People
This guide offers a common-sense practical approach to the assessment of risk in relation to the moving and handling of disabled children and young people.
The Well Happy App
The Well Happy App is a free health app for young people aged 12-25 in London. It allows users to search for over a thousand local support services in and around London including mental health, sexual health, drugs, alcohol and stop smoking services. The app is available in Android and Apple formats.
Your Health Matters
Leeds NHS runs the 'Your Health Matters' project to help those with learning disabilities manage their health needs.
Youth Health Talk!
This is a website about young people’s real life experiences of health and lifestyle. This is not just a website about the medical facts, this is about real people and real lives. Watch, listen and read young people talking about their experiences, and feel free to join in the forums.
2. Mental Health
All About Feeling Down
A booklet for young people with learning disabilities about what they can do if they are feeling down.
Children and young people with learning disabilities
This information pack is intended to provide a basic introduction to mental wellbeing and mental health problems before considering mental health problems in children and young people with learning disabilities in more depth.
Guide to Mental Health Services
A young person's guide to services that can help them if they experience problems with their mental health.
How to look after your mental health using exercise
This booklet, from the Mental Health Foundation, explains why exercise is important, and suggests how you can get started and stay motivated.
Mental health service transitions for young people
This guide is for all staff working with young people with mental health problems who need to move from one service to another that is, to make a 'transition'.
My CAMHS Choices
This website has been created by young people for young people, to act as a support and provide information on mental health services.
Supporting effective transitions in mental health services for young adults
Resources on improving the experience of young people who are moving from mental health services for children and adolescents to adult mental health services or alternative support in adulthood.
Using the Mental Capacity Act Guide
Hft has created a guide to using the Mental Capacity Act for families and friends of people with learning disabilities.
YoungMinds
YoungMinds is a charity committed to improving the emotional wellbeing and mental health of children and young people.
The Well Happy App
The Well Happy App is a free health app for young people aged 12-25 in London. It allows users to search for over a thousand local support services in and around London including mental health, sexual health, drugs, alcohol and stop smoking services. The app is available in Android and Apple formats.
The Young Mind
This is an accessible, user-friendly handbook for parents, teachers and young adults.
You are not alone
These guidelines have been written for parents and carers of young people with learning disabilities who want to know what help is available if their son or daughter develops an emotional health problem, and how they might go about getting that help.
3. Sexual Health
AYPH Be Healthy
Be Healthy is a young people's participation project that researched the health needs of young people affected by sexual exploitation.
Family Planning Association
The Family Planning Association have a number of resources for parents, children and people with learning disabilities about sexual health and family planning.
Growing up, sex and relationships - a booklet to support parents of disabled young people
Booklet by Contact a Family for parents of disabled young people.
Growing up, sex and relationships - a booklet for disabled young people
Booklet by Contact a Family for young people.
The Complete Guide To Contraception & Your Cycle
This guide from Yoppie aims to help women become more informed about contraceptives and how it impacts their menstrual health.
The Well Happy App
The Well Happy App is a free health app for young people aged 12-25 in London. It allows users to search for over a thousand local support services in and around London including mental health, sexual health, drugs, alcohol and stop smoking services. The app is available in Android and Apple formats.