Community paediatrics – useful websites

Autism

Autism is not an illness.  It means your brain works in a different way from other people.  It is something you are born with and you will be autistic your whole life.  It is not a medical condition with treatments or a cure, but some people need support to help them with certain things.  People with autism may find it tricky to talk to others or understand certain information. They might also like doing the same things again and again, and sometimes feel worried in busy places or possibly get upset by bright lights and loud noises. 

How our young patients see autism

One 10-year-old boy explained to us that autism is part of who he is. In this drawing, he shared how his brain might understand things in circles, and yours might use squares; both brains are ok, they’re just different.  He wanted us to let people know that "being different is ok and it’s like having a superpower really".

Trusted websites and online resources about autism

National Autistic Society (NAS) is a UK charity with lots of useful information and support for people with autism and their families.

Ambitious About Autism is another UK charity with information and advice for young people and their families

The NHS website has further information, advice and videos to watch

Lambeth Council have partnered with Chocolate Films Workshops to support 27 young people from three schools in Lambeth to create a short documentary film: Autism: A Unique Life, about their lived experiences of autism.

ADHD

Trusted websites and online resources about ADHD

ADHD UK is a UK website made by people with ADHD with useful information and advice for people with ADHD

We recommend schools and education settings implement the Attention Difficulties Resource Pack for children with ADHD. 

Please see the education and parenting section for further support.  

How our young patients see ADHD

One 9-year-old boy wanted to explain to us that getting a diagnosis doesn’t change you, it helps you understand yourself more. In this drawing he shares that he was George before his diagnosis and is still George now. 

More information

This Neurodiversity Hub offers a collection of resources for children, young people and parents and carers. Topics include ADHD, Autism, other neurodiverse conditions and difficulties. Please check to access the information and resources for bitesize learning and at your own pace. You can dip in and dip out and view or download as and when needed.

Understanding ADHD, Autism and other Neurodiverse conditions in Small Bites.

MenCap provides support for people with learning disability

The Challenging Behaviour Foundation is a UK charity specifically focussed on the needs of children, young people and adults with severe learning disabilities whose behaviour may be described as challenging, and their families.

Contact a Family is a national charity that exists to support the families of disabled children whatever their condition or disability. The website has information on many conditions in the ‘A-Z medical conditions’ section.

Scope is a charity that supports disabled people and their families in England and Wales. 

Hemi Help is a charity providing support and information to people with hemiplegia.

Family Fund provides a wide range of grants to families raising a disabled or seriously ill child, or young adult on a low income.

Cerebra offers guides and factsheets to help families of children with brain conditions.

Down's Syndrome Association is helping people with Down's syndrome to live full and rewarding lives. 

Transition to adult services for young people with learning disabilities

GP annual health check

All young people with a learning disability should have a yearly review with their GP to check and support their health needs from the age of 14 years. This helps your GP get to know you well before they take over from us when you’re 18 years old.

Making decisions for young people

Before age 16: parents or carers with parental responsibility make decisions for the child.

From age 16: The Mental Capacity Act applies.

Young people should be supported to make their own decisions whenever possible. If they cannot decide for themselves, other people must make choices in their best interests. Family often make these decisions, but sometimes others (like doctors) must decide. For medical issues, the doctor makes the decision.

Deputyship: Parents or carers can apply for a deputyship. This means they can continue making decisions about education, health, social care, or money after their child turns 16.

For more information, please see: 

• Appointees, deputies and power of attorneys
• Deputies: make decisions for someone who lacks capacity

Education is a huge part of children’s and young people’s lives. Some children and young people may find it difficult to access learning due to additional needs. Support is available to make learning at school easier.

There is a useful postcode search tool to see if you are eligible for a Lambeth or Southwark support service.

Lambeth:

• Parenting Support Service | Lambeth Council offers a range of in person or online parenting courses for families living in Lambeth. 
• SEND local offer in Lambeth offers services and support for children and young people, aged 0 to 25, with special educational needs or disabilities (SEND) in Lambeth.
• Lambeth Information, advice and support services (LIASS) offers advice and support to parents and carers of children and young people with special educational needs to access the support they need in school.

Southwark:

• Parenting | Southwark Council offers a range of parenting support for families living in Southwark. 
• SEND local offer in Southwark offers services and support for children and young people, aged 0 to 25, with SEND in Southwark.
• Southwark Information and Advice Service (SIAS) offers advice and support to parents and carers of children and young people with special educational needs to access the support they need in school.

Many children and young people struggle with their wellbeing. They may experience difficult feelings which can have a big impact on life at home and at school.

• Young Minds is a UK charity committed to improving the emotional wellbeing and mental health of children and young people.
• Raising Children offers articles, videos and guides related to mental health and advice for pre-teens about improving mental health.
• Mind is a charity supporting people with mental health problems.
• Mind Ed offers online information and training for people working with children and young people's mental health issues.
• The Nest Southwark offer mental wellbeing advice and support for young people aged 13-25 in Southwark.

Lots of children and young people have difficulties with getting to sleep or staying asleep. This is even more common in children and young people with disabilities and/or neurodiversity.

• The Sleep Charity provides advice, education and support to help children and teenagers get a better night's sleep.
• The Contact website offers helpful information for you and your child's sleep, particularly for children with disabilities and certain medical conditions.
• The sleep advice service on the Cerebra website introduces and explains different techniques for improving your child's sleep.
• The Raising Children website provides advice for improving sleep in children aged 5 to 8 years old and pre-teen lifestyle advice, including advice for good sleep.
• Home - Teen Sleep Hub is a one-stop-shop for all teens need to know about sleep.

Some families find toilet training tricky, and some children have difficulties with constipation or incontinence.

Eric provides helpful advice about potty training, bedwetting, wee and poo accidents and constipation

• Community speech and language therapy service
• Community occupational therapy
• Community physiotherapy services
• Support with your wellbeing
• Looked after children service
• Safeguarding children
• Sleep medicine services
• Feeding service
• Neurodevelopmental services