Terms used in this report

The tables below explain terms and initialisms/acronyms used in the report




Brokerage, or help with using personalized budgets to plan support for independent living, is not yet widely recognized or developed in the UK. SCIE suggests that it needs to be independent of the service system. In-Control recommends a ‘community-focussed’ brokerage service that would be flexible to support different people’s needs.
Implementation of individual budgets schemes in adults social care SCIE Research Briefing 20, 2009. See: In Control


A carer is someone who, without payment, provides help and support to a partner, child, relative, friend or neighbour, who could not manage without their help. The term carer should not be confused with a care worker, or care assistant, who receives payment for looking after someone.
Definition from The Princess Royal Trust for Carers, cited in Bernard et al 2011b.

Communicative space

This is an overt space where people can ‘forge common understandings’ and which is afforded value both within organisations and by practitioners and service users. It is where people come together to co-labour in order to shape treatment and care, based on sharing and exploring each other’s ideas and experiences. It is required to enable a process of active engagement where all parties share responsibility for critical reflection, which is essential for inclusive practice. This is crucial if aspects of rehabilitation such as goal setting, care planning (e.g. for personal support, end of life) are to deliver optimal outcomes for, and be valued by, the individual with a LTNC.
Cook and Atkin, 2011, p 10.

Continuity of care

A term describing the experience, and provision of, timely, appropriate and ongoing care from relevant service providers as required by people living with long-term health conditions. Parker et al report there are currently no universally recognised definitions of continuity of care.
Parker et al, 2010, p11


An independent person who enables people to work more effectively together through advocating fair, open and inclusive communication. They assist people in thinking deeply about their assumptions, beliefs and values and actions and to learn together.
Cook and Atkin, 2011, p10.

Hidden impairments

This term was used by researchers to describe impairments that are not immediately apparent, such as behavioural, emotional and mental health difficulties.
Jackson, 2011 a; Playford, 2011.


This term is used to conceptualise a process that involves society in making changes, both physical and attitudinal, that embrace diversity and enable all people to make choices about the way they live their lives. Inclusive practice incorporates this as a fundamental aspect of practitioner or provider behaviour.
Cook and Atkin, 2011, p11.


Arguably, integration is the provision of ‘reasonable adjustments' to enable facilities to admit people with particular needs but where the setting itself remains essentially unchanged. It is characterised by an approach where disabled people may have certain choices but have to fit in, in the best way they can, with the onus being on the person to make accommodations.
Cook and Atkin, 2011, p11.


Rehabilitation is a process of assessment, treatment and management by which the individual (and their family/carers) are supported to achieve their maximum potential for physical, cognitive, social and psychological function, participation in society and quality of life. Individual goals for rehabilitation vary according to the trajectory and stage of their condition and the individual concerned.
British Society of Rehabilitation Medicine:

Replacement care

Defined by Bernard et al (2011b) as services that would be used to enable carers to go to work, or continue working or engage in training or education.
Bernard et al, 2011b, p 5.


Respite care





Defined by Bernard et al (2011b) to describe services that would allow carers to take breaks from caring for rest, relaxation, leisure or social activities.
Bernard et al, 2011b, p 5.




Any service that brings health and social care directly to a user, generally in their homes, supported by information and communication technology. It covers social alarms, lifestyle monitoring and Telehealth.

Vocational rehabilitation

A specialist rehabilitation service (for people with long-term neurological conditions) characterised by a multi-disciplinary team with expertise in long- term neurological conditions who, through shared education and learning and by working with employees and employers in the work-place, aim to meet the needs of the majority of their patients/clients to achieve their goals in meaningful occupation.
Playford, 2011, p12.


Initialism/ acronym



Community Inter-disciplinary Neurological Rehabilitation Team


Charcot-Marie Tooth disease


Commissioning for Quality and Innovation


Department of Health


Duchenne Muscular Dystrophy


Huntington’s Disease


Joint Strategic Needs Assessment


Long-term Fitness Enablement (study)


Long-term Condition (usually a medical condition)


Long-term Neurological Condition


Long-term Neurological Conditions Research Initiative


Multiple Sclerosis


Multiple System Atrophy


National Service Framework


Office for Disability Issues


Office for National Statistics


Occupational Therapist


Primary Care Trust


Parkinson’s Disease


Policy Research Programme


Progressive Supra-nuclear Palsy


Quality Requirement


Review of Epidemiology and Service Use in Rare LTNCs (study)


Specialist Short-term Integrated Palliative Care


The Health Information Network


The Stationery Office


Vocational Rehabilitation




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