Glossary

Advance Statement [Mental Health (Care & Treatment) Act]: A written statement, drawn up and signed when the client is well, which sets out how they would prefer to be treated (or not treated) if they were to become ill in the future.  It must be witnessed and dated. A Tribunal, and any medical practitioner treating the client, must give due regard to an advance statement.

Advocacy: A process seeking to ensure that people, particularly those who are most vulnerable in society, are able to have their voice heard on issues that are important to them.

Allied Health Professionals (AHPs):  A collective term for health professionals distinct from medicine or nursing. Examples include Speech and Language Therapist, Dietician, Physiotherapist & Occupational Therapist.

Anticipatory Care Plan: Process designed to support clients living with a chronic long-term condition to help plan for an expected change at some time in the future.

Assistive technology: Devices to promote greater independence by enabling people to perform tasks that they were unable to accomplish, or had difficulty accomplishing.

Asymptomatic: A client with no signs or symptoms of a condition is described as asymptomatic.

Chorea: Brief, abrupt, irregular, unpredictable movements.

Clinical neuropsychology: A specialty field within clinical psychology dedicated to understanding the relationships between brain and behaviour, particularly as applied to the diagnosis of brain disorder and assessment of cognitive and behavioural functioning.

Diagnostic testing: A blood test given to clients who are displaying symptoms of HD to determine if they have the condition.

Dietetics: Branch of knowledge concerned with the diet and its effects on health.

DNACPR: Do Not Attempt Cardiopulmonary Resuscitation (Cardiopulmonary Resuscitation is an emergency procedure that seeks to manually preserve brain function in a person who is in cardiac arrest).

Guardianship: By law, if an adult is unable to make key decisions or take necessary actions to safeguard his or her own welfare, a court can appoint a guardian to do this for them.  Guardians can make decisions about where a person lives, as well as about their personal and medical care or finances.

HD Clinical Lead: A doctor designated to provide specialist medical advice, care and treatment to people with HD. They work with other doctors to coordinate care across an NHS Board area, and may run specialist clinics or see people in other settings – including their home – when appropriate.

HD Clinics: Clinics providing specialist symptom management and coordinating a range of other support to ensure there is a care plan which addresses all the needs of each person with HD, their carer and family.

HD Specialist: Specialist staff from a health and/or social care background who assess need, coordinate care, train, educate and advocate on behalf of HD families. They are typically employed via joint funding from NHS Boards, Health & Social Care Partnerships and the Scottish Huntington’s Association.

Health and Social Care Partnerships (HSCPs): The organisations formed as part of the integration of health and social care services. Each partnership is run jointly by the relevant local NHS Board and Local Authority/ Council. There are 32 HSCPs across Scotland.

Key Information Summary (KIS): A system allowing important client information to be shared with health care professionals in unscheduled care across NHS 24, A&E, Scottish Ambulance Service, out of hours, hospital and pharmacy environments.

Living Will: A written statement detailing a person’s desires regarding future medical treatment in circumstances in which they are no longer able to express informed consent, especially an advance directive.

Preimplantation Genetic Diagnosis: A national service that seeks to assist families living with genetic conditions to have children via IVF.

Multi-Disciplinary Team (MDT):  A group of health and social care professionals from a variety of disciplines providing care and support to a client.

Occupational Therapy: The use of particular activities as an aid to recuperation from physical or mental illness.

Power of Attorney: Legal authority granted by one individual to another to act on their behalf in specified or all legal or financial or welfare matters.

Predictive testing: A blood test given to clients from an HD family, who are not displaying any symptoms of HD, to determine if they have the faulty HD gene and will therefore develop symptoms in due course.

Prenatal direct mutation testing: The testing of a child in the womb for HD, with a view to determining if that child has the genetic change that causes HD.

Prenatal exclusion testing: A test taking DNA samples from an at-risk person, at least one of their parents, their partner and an unborn child with a view to determining whether the child is as high or low risk of inheriting HD, without providing in a definitive diagnosis for the child or the at-risk parent.

Respite Care: Planned or emergency temporary care provided to family members/caregivers.

SCI Gateway: A national system that integrates primary and secondary care systems using secure internet technology.

Scottish Huntington’s Association Youth Project (SHAYP):  A project working with young people aged 8-25 living in families affected by Huntington’s disease.

Specialist Youth Advisors: Scottish Huntington’s Association Youth Project (SHAYP) staff offering help and support to young people throughout Scotland.

Symptomatic: A client displaying signs & symptoms of a condition is described as symptomatic.

Care Programme Approach (CPA):  A way that services are assessed, planned, co-ordinated and reviewed for particularly vulnerable clients who are at risk of harming themselves or others.

Treatment Algorithm:  A method for solving a problem or achieving a specific goal. It has one or more finite steps, each of which may have one or more operations.

Visuospatial perception:  Ability to process and interpret visual information about where objects are in space. A person’s visuospatial perception affects their ability to accurately reach for objects in their visual field and to shift their gaze to different points in space.

Wills & Testament: A legal document by which a person expresses his or her wishes as to how his or her property is to be distributed at death. It names one or more persons (the executors) to manage the estate until its final distribution.

National Care Framework for Huntington's Disease