Terminology

Advocate: Someone who can support you by advocating on you or your child’s behalf to improve quality of life. Your Local Authority should be able to tell you what advocacy services are available in your area. This information should also be available on your Local Offer website.

CAMHS: Child and Adolescent Mental Health Service. CAMHS are NHS services delivered locally that assess and treat children and young people with mental health difficulties.

CCC: Children’s Continuing Care. A package of care for children and young people under the age of 18 who have very complex health needs, which may be the result of congenital conditions, long-term or life limiting or life-threatening conditions, disability, or the after-effects of serious illness or injury. 

CCN: Children’s Community Nurse - a paediatric nurse who supports children at home.

Commissioning – You may hear this term in conversations about funding. The NHS defines commissioning as: “the process of assessing needs, planning and prioritising, purchasing and monitoring health services, to get the best health outcomes”. Commissioning is essentially the buying of services and equipment to make sure people’s health needs are met.

Community health care – A term used to describe health care that does not take place in a hospital, including care at home. The team of professionals who provide care to children whilst they are at home are sometimes referred to as the community team.

CHC – Continuing Healthcare (for adults). A package of ongoing care for adults that is arranged and funded by the NHS. A Continuing Healthcare package may be given if an individual over the age of 18 has been assessed and found to have a ‘primary health need’ as set out in this National Framework. Such care is provided to meet health and social care needs that have arisen as a result of disability, accident or illness.

CYP – Children and Young People, or Child or Young Person. Sometimes used by professionals instead of the terms “child” or “young person” to describe people under the age of 18.

CYPCC – Children and Young People’s Continuing Care–  In England and Wales, children and young people may be eligible for a Continuing Care package “if they have needs arising from disability, accident or illness that cannot be met by existing universal or specialist services alone”. More information is available on the NHS website here >> 

EHCP or EHC Plan – Education, Health and Care Plan. This is a legal document that describes a plan agreed by you, your Local Authority, and clinical commissioning group. Your child’s EHCP will allow them to access education. You must ask your Local Authority to carry out an assessment if you think your child needs an EHC plan. The plan contains a description of your child’s education, health and social care needs. It also describes what should be put in place by the Local Authority to make sure your child’s needs are met and they can achieve as much as they can.

End of Life – End of Life care is support for people who are in the last months or years of their life. End of Life care should help them to live as well as possible until they die and to die with dignity.

ICB: Integrated Care Board (formerly know as a Clinical Commissioning Group or CCG):  your local ICB is led by clinicians and assesses the health needs of the local population, decides which services to prioritise for funding, and then buys services which are provided by clinics, hospitals and other healthcare providers.

LA – Local Authority – This refers to your local council. They look after social care and education, and you will be in contact with them about your child’s EHCP.

LD – Learning Disabilities.

Life-limiting condition – This phrase is often used to describe conditions for which there is no cure.

Life-threatening condition – This phrase describes conditions for which there are treatments, but there is a chance that the treatments will not work.

Local Offer – Your Local Authority must make a list of services available to children with special educational needs and disabilities in your local area. This is called the Local Offer. Local Offers are usually available on your Local Authority’s website.

MCA – Mental Capacity Act. A law passed in 2005 designed to protect and empower people who may lack the mental capacity to make their own decisions. This might include people who have a severe learning disability, a mental health illness or a brain injury. The act applies to people aged 16 or over. When you child reaches 16, they may receive a Mental Capacity Assessment. For more information about the Mental Capacity Act, visit the NHS website >>

Paediatrician – A doctor who is a specialist in children’s medicine.

Palliative care – Palliative care means providing the best possible quality of life and care for children and young people with a life limiting or life-threatening condition. Palliative care may focus on making sure children can spend more time at home, pain management, emotional support, or a combination of all of these.

PALS – Patient Advice and Liaison Service. Each NHS trust will have a related PALS, which offers confidential advice, support and information on health-related matters. PALS can help you resolve concerns you might have about your child’s care, or provide you with information about the NHS complaints procedure.

PHB – Personal Health Budget. In some areas of the UK, your ICB may offer you a personal health budget. This budget is paid in direct payments to you, which you use to hire carers for your child as they are living at home.

SEN –Special Educational Needs. Sometimes this is expanded to Special Educational Needs and Disability: SEND. This term is used in Education and sometimes by healthcare professionals to describe a child whose needs affect their ability to learn or otherwise access education.

SENCO – Special Educational Needs Coordinator. Every school will have a teacher who acts as the SENCO. The SENCO is responsible for ensuring that students with special educational needs are able to get the support they need at school.

Social worker – Usually employed by your Local Authority, social workers will talk to you about the needs of your family and can support families through difficult times. A social worker will carry out a needs assessment and help your family access social care services provided by the Local Authority, including short break services and care at home.