What do all the words and initials mean?

ADRT - Advanced Decision to Refuse Treatment
You can write down instructions in an ADRT to refuse or withdraw specific treatments in the future, in case you become unable to make or communicate decisions. If completed correctly and all conditions are met, an ADRT is legally binding in England and Wales.

ALS - Amyotrophic lateral sclerosis
The most common form of MND, with weakness and wasting in the limbs, muscle stiffness and cramps. The term ALS is also used in other countries as an umbrella term, in the same way that we use the term MND in the UK.

AR - Androgen receptor
Relates to Kennedy's disease. The androgen receptor is a gene, that carries the mutation typical of Kennedy's disease.

BPAP - Bilevel positive airway pressure
The dual pressure control BPAP machine increases air pressure in the throat, so the airway is supported when breathing in. Also see NIPPV and NIV.

CPAP - Continuous positive airway pressure
Similar to the BPAP machine with one air pressure option. Also see NIPPV and NIV.

DNAR or DNACPR - Do not attempt to resuscitate or Do not attempt cardiopulmonary resuscitation
A document that guides professionals if a person does not want to receive resuscitation, should their heart and breathing stop. It can be made a legal order if included in an Advance Decision to Refuse Treatment (ADRT) - see ADRT in this list. Sometimes referred to as a DNR (Do Not Resuscitate).

EMG - Electromyogram
A test that uses a small needle inserted into a muscle to record the electrical activity in the nerves.

FALS or FMND - Familial amyotrophic lateral sclerosis or familial motor neurone disease
This refers to inherited MND, where there is a family history of the disease (about 1 in 10 cases). This does not necessarily mean another family member will get the disease.

FTD - Frontotemporal dementia
A type of dementia that results in severe changes to thinking and behaviour. This happens for a small number of people with MND.

FVC - Forced vital capacity
A test used to work out lung capacity, by measuring the amount of air that can be forcibly exhaled from the lungs, after taking the deepest breath possible.

KD - Kennedy's disease
KD is not a common abbreviation, but is sometimes used as a short name for Kennedy's disease. This is a rare disorder of the motor neurones caused by a genetic mutation. This condition can be confused with MND at diagnosis, as they have similar symptoms. The MND Association supports people with or affected by Kennedy's disease.

LMN - Lower motor neurones
Lower motor neurones begin in the spinal cord. They send messages in the body to tell muscles to move. These messages are received from the upper motor neurones which begin in the brain and end in the spinal cord. When motor neurones are damaged and the messages cannot get through, muscles can no longer move.

MI-E - Mechanical Insufflation-Exsufflation
A mechanical device that helps someone cough to clear airways. It uses a mask, mouth-piece, or tracheostomy connector to provide air pressure that can be released as a cough.

MRI - Magnetic resonance imaging
A scan which involves lying inside a large tube-shaped machine that makes detailed images of the inside of the body. It is used to rule out anything abnormal in the brain and spine that might produce the same symptoms as MND.

MND - motor neurone disease
MND is used as the short name for motor neurone disease. It is also a general term to cover the different forms of this neurological disease.

NG - Nasogastric tube
A feeding tube that is inserted through the nose and down the throat into the stomach. This can be used to receive liquid feeds and fluids if someone has swallowing difficulties. Usually a short term solution – see PEG, RIG and PIG for details about other types of tube feeding, used for longer periods of time.

NIPPV - Non-invasive positive pressure ventilation
Another way of describing NIV used for support with breathing problems, where a machine helps push air flow into the lungs, through a face or nose mask.

NIV - Non-invasive ventilation
NIV is used for support with breathing problems, where a machine helps push air flow into the lungs, through a face or nose mask.

PBP - Progressive bulbar palsy
Also known as bulbar onset MND, this type of MND affects a smaller number of people than typical ALS, and mainly affects the muscles of the face, throat and tongue. Early symptoms may include slurring of speech or difficulty swallowing.

PEG - Percutaneous endoscopic gastrostomy
A PEG tube is inserted into the stomach through the abdomen, to help with liquid feeds and fluids if someone has swallowing difficulties. See also PIG and RIG - these all support the same task of tube feeding, but each is fitted in a different way.

PIG - Per-oral image-guided gastrostomy
A PIG tube is inserted into the stomach through the abdomen, to help with liquid feeds and fluids if someone has swallowing difficulties. See also PEG and RIG - these all support the same task of tube feeding, but each is fitted in a different way.

PLS - Primary lateral sclerosis
A form of MND that causes weakness in the lower limbs, although some people may experience clumsiness in the hands and speech problems. PLS progresses slowly.

PMA - Progressive muscular atrophy
A type of MND that affects only a small number of people. Early symptoms usually show as weakness or clumsiness of the hands.

RIG - Radiologically inserted gastrostomy
A RIG tube is inserted into the stomach through the abdomen, to help with liquid feeds and fluids if someone has swallowing difficulties. See also PEG and PIG - these all support the same task of tube feeding, but each is fitted in a different way.

SBMA - Spinal bulbar muscular atrophy
Another name for Kennedy’s disease.

UMN - Upper motor neurones
Upper motor neurones begin in the brain and travel to the spinal cord. They control muscles in the face, mouth and throat. They also send messages to the lower motor neurones, which start in the spinal cord and reach out to muscles in the body. These messages tell muscles to move. When motor neurones are damaged and the messages cannot get through, muscles can no longer move.

AA - Attendance Allowance
A tax-free benefit for people aged 65 or over who need help with personal care because they are physically or mentally disabled.

AAC - Augmentative and alternative communication
Communication methods used to supplement or replace speech or writing for those with communication difficulties. This includes simple solutions such as alphabet boards and notepads, and computer-based communication like eye tracking software.

CHC or NHS CHC - NHS continuing healthcare
NHS continuing healthcare (CHC) is a package of ongoing care for urgent or complex health conditions. It is arranged and funded by the NHS and usually covers both health and social care needs. It can be received in a care home, hospice or where the person is living.

CQC - Care Quality Commission
From the Department of Health and Social Care, this organisation helps regulate and inspect health and social care services in England.

DFG - Disabled Facilities Grant
A means-tested local council grant to help towards the cost of adapting the home to enable a disabled person to continue to live there. A grant is awarded when the council considers that changes are necessary to meet the person’s needs and that the work is reasonable and practical.

DLA - Disability Living Allowance
A tax-free benefit to support those who are physically or mentally disabled. For most people, this has been replaced by Personal Independence Payment (PIP).

DHSC - Department of Health and Social Care
Government department responsible for the NHS, public health and adult social care matters.

DWP - Department for Work and Pensions
The Department for Work and Pensions (DWP) is responsible for welfare, pensions and child maintenance policy.

ESA - Employment and Support Allowance
A benefit to help with living costs if you are unable to work due to a disability or health condition.

HSCP - Health and social care professional
A professional who works in a clinical setting, such as a doctor or speech and language therapist. Or a professional who works in a social care setting, such as an occupational therapist or social worker.

ICS - Integrated Care Systems
Regional partnerships, that bring together providers and commissioners of NHS services, with local authorities and relevant partners. They plan, co-ordinate and commission health and care services.

ISF - Individual Service Fund (England only)
If you receive direct payments in England for social care through a ‘third party’ organisation, agency or provider, this is known as using an Individual Service Fund (ISF). The ISF books and pays for services agreed in your support plan, in line with your wishes and the budget available.

MCA - Mental Capacity Act
The Mental Capacity Act 2005 is designed to protect and empower people in England and Wales who cannot make or communicate decisions, or need support to do so.

MDT - Multidisciplinary team
A group of professionals from different disciplines who provide a team approach to the care of a person with MND.

NHS - National Health Service
The UK’s publicly funded health service. Everyone in the UK can use this service without having to pay or pay the full cost of their treatment. There’s more than one NHS in the UK, with NHS England, NHS Wales (GIG Cymru), NHS Scotland and in Northern Ireland it's called Health and Social Care Services (HSC).

NHS CHC or CHC - NHS continuing healthcare
NHS continuing healthcare (CHC) is a package of ongoing care for urgent or complex health conditions. It is arranged and funded by the NHS and usually covers both health and social care needs. It can be received in a care home, hospice or where the person is living.

NICE - National Institute for Health and Care Excellence
NICE provides national guidance and advice to improve health and social care. This includes whether drugs and treatments should be prescribed for particular conditions. NICE guidelines make recommendations about care to professionals and NICE guideline 42 refers to the management of MND.

OT - Occupational therapist

A professional who helps disabled people manage everyday tasks with as much confidence and independence as possible, for as long as possible.

PIF - Patient Information Forum
An organisation that champions trustworthy health information and runs the PIF Tick quality mark (the MND Association’s information for people with or affected by MND or Kennedy’s disease is accredited through the PIF Tick).

PIP - Personal Independence Payment
A benefit to help people aged under 65 with extra costs if they are disabled or have a long term condition.

PWB - Personal wheelchair budget
A form of NHS personal health budget in England, which allows posture and mobility needs to be included in wider care planning. This can enable you to access more choices of wheelchair.

ReSPECT
The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is a form that you fill out with a healthcare professional to provide guidance about your care and treatment in an emergency. It is not legally binding, but can be used anywhere in the UK.

SLT or SaLT - Speech and language therapist
A professional who can assess and help support people who have difficulties with communication, eating, drinking or swallowing.

SIG - Special interest group
A group of professionals, including people living with or affected by MND, who wish to share their knowledge on a chosen subject.

SRTI - Special Rules for Terminal Illness
The fast-track process for claiming benefits if someone has a terminal illness and meets the given criteria. This requires a DS1500 or SR1 form to be signed by a medical professional.

UC - Universal Credit
A means-tested benefit to support people of working age on a low income.

WAV - Wheelchair accessible vehicle
A vehicle that gives access to a wheelchair user, without them having to get out of the wheelchair.

ASC - Area support co-ordinator
Our ASCs work with regional health and social care staff, and support volunteers, to ensure people affected by MND receive appropriate support.

APPG - All Party Parliamentary Group (on MND)
A cross-party group of MPs and Peers with an interest in MND. The MND Association helps to arrange meetings and keep track of members.

AV - Association visitor
Where available, our trained volunteer Association visitors help people living with MND and their families. They help provide information, guidance and emotional support by home visit, telephone or email contact.

AVC - Association visitor co-ordinator
Association visitors who take on additional duties in some areas, including mentoring and buddying new AVs, attending multidisciplinary team meetings, organising support meetings for AVs and people with MND and acting as branch contact.

BoT - Board of Trustees
A group of volunteers elected or co-opted to be responsible for the governance of the MND Association, helping to shape its broad policies.

HoRCP - Head of regional care partnerships
Our leads on delivery of MND Association strategy at a regional and local level, who also manage our regional care staff in their area.

QoL - Quality of life
Describes the standard of health, comfort, satisfaction or wellbeing for an individual or group. This can be applied to an aspect of daily living or a person’s general state of being.

RF - Regional fundraiser
Fundraiser within a region, who develops relationships at all levels.

SDM - Service development manager
Our SDMs help develop and improve local services, by identifying opportunities and gaps in service provision.

AMBRoSIA - A Multicentre Biomarker Resource Strategy In ALS
A research project searching for biomarkers of MND.

ALSoD - Amyotrophic Lateral Sclerosis online genetic Database
A database that stores information about all known genetic mutations linked to MND.

AMRC - Association of Medical Research Charities
A membership organisation of the leading medical and health research charities in the UK.

BioMOx - The Oxford study for biomarkers in MND/ALS
A study that aims to discover a test to speed up the diagnosis of MND, to understand how the disease begins and spreads, and monitor its progression.

BRAP - Biomedical Research Advisory Panel
This panel meets twice a year (Apr/Oct) to review biomedical research applications which are received by the Association. If approved by the Panel, they are then presented to the Board of Trustees for their ratification.

CALM - Coping And Living well with MND study
The aim of this study is to evaluate the usability, acceptability and engagement of the CALM website intervention.

DeNDRoN - Dementia and Neurodegenerative Diseases Research Network
DeNDRoN is part of the National Institute for Health Research (NIHR) Clinical Research Network (CRN), supporting research in the NHS in neurodegenerative diseases.

DiAMoND - Decision aid for people living with MND considering gastrostomy
The aim of this project is to develop a web-based decision aid to help people with MND decide whether to have a feeding tube fitted.

FaTHoM - Families for the Treatment of Hereditary MND
A research initiative to bring together the community of families affected by inherited forms of MND.

GIG - Genetic Interest Group
A London-based national alliance of organisations which support families and individuals affected by genetic disorders.

HFE Bill - Human Fertilisation and Embryology Bill
An Act of Parliament to ensure regulation of processes for the creation of human embryos outside of the body.

MAGNET - Multi-arm, Adaptive, Group-sequential, trial NETwork
A trial helping to investigate multiple treatments at the same time. Lithium carbonate is the first promising candidate therapy to be studied using the MAGNET trial.

MIROCALS - Modifying Immune Response and Outcomes in Amyotrophic Lateral Sclerosis
A clinical trial taking place in the UK and France, testing the safety and effectiveness of a drug called Interleukin-2 (IL-2) in people with ALS.

MND-SMART - MND-SMART
A trial helping to investigate multiple treatments at the same time. Two drugs, memantine and trazodone, are the first candidate therapies to be studied in MND-SMART

MRC - Medical Research Council
The Medical Research Council (MRC) is a publicly funded organisation dedicated to improving human health. The MRC also work in partnership with charities, including the MND Association.

Project MinE - An international research initiative to sequence the genomes of people with MND
Aimed at detecting genetic causes and risk factors for MND.

SITraN - Sheffield Institute for Translational Neuroscience
One of the world-leading centres for research into motor neurone disease.

TRICALS - Treatment and Research Initiative to Cure ALS
The largest European MND research initiative to date, including the UK, Australia and Canada.

TONiC - The Trajectories of Outcome in Neurological Conditions
A national study examining what affects quality of life for patients with neurological conditions.

TUDCA-ALS - Tauroursodeoxycholic acid (TUDCA)
A clinical trial taking place in the UK and Europe, testing the safety and effectiveness of TUDCA as an add on treatment for people with ALS.

Advanced Decision to Refuse Treatment (ADRT)
You can write down instructions in an ADRT to refuse or withdraw specific treatments in the future, in case you become unable to make or communicate decisions. If completed correctly and all conditions are met, an ADRT is legally binding in England and Wales.

Amyotrophic lateral sclerosis (ALS)
The most common form of MND, with weakness and wasting in the limbs, muscle stiffness and cramps. The term ALS is also used in other countries as an umbrella term, in the same way that we use the term MND in the UK.

Androgen
Relates to Kennedy’s disease. A hormone that stimulates the development of mainly male characteristics.

Androgen receptor
Relates to Kennedy's disease. The androgen receptor is a gene, that carries the mutation typical of Kennedy's disease.

Atrophy
Wasting of the tissues or organs in the body. This usually applies to muscle and the way the muscle reduces.

Bulbar
Describes symptoms that affect the mouth and throat. The word refers to the bulb-shaped part of the brain stem that contains the motor neurones for swallowing, speaking and chewing.

Bilevel positive airway pressure (BPAP)
The dual pressure control BPAP machine increases air pressure in the throat so that the airway is supported when breathing in. Also see NIPPV and NIV.

Chromosome
The part of any cell in your body that contains your genes. Genes tell each cell how to appear and behave, including our physical traits and features.

Continuous positive airway pressure (CPAP)
Similar to the BPAP machine with one air pressure option. Also see NIPPV and NIV.

Do not attempt to resuscitate or Do not attempt cardiopulmonary resuscitation (DNAR or DNACPR)
A document that guides professionals if a person does not want to receive resuscitation, should their heart and breathing stop. It can be made a legal order if included in an Advance Decision to Refuse Treatment (ADRT) - see Advanced Decisions to Refuse Treatment in this list. Sometimes referred to as a DNR (Do Not Resuscitate).

Dysarthria
Slurred speech.

Dysphagia
Difficulty with swallowing.

Dyspnoea
Shortness of breath.

Electromyogram
A test that uses a small needle inserted into a muscle to record the electrical activity in the nerves.

Emotional lability
Also known as pseudo-bulbar affect. This refers to a symptom that can happen for some people with MND, where you may laugh or cry in ways that feel inappropriate. It can be difficult to stop and often does not reflect how you feel.

Enteral feeding
This type of feeding is when liquid feeds or fluids are given through a feeding tube, which is usually placed into the stomach through the abdomen. See also parenteral feeding.

Fasciculation
Twitching of muscles, that can feel like rippling under the skin.

Familial amyotrophic lateral sclerosis (FALS) or familial motor neurone disease (FMND)
Another way to describe inherited or hereditary MND, where there is a family history of the disease (about 1 in 10 cases). This does not necessarily mean another family member will get the disease.

Feeding tube
If someone has swallowing difficulties, a feeding tube lets them receive liquid feeds and fluids. See also nasogastric tube and gastrostomy tube.

Flail arm syndrome
Where arm muscles waste, become limp and cannot be moved voluntarily.

Forced vital capacity (FVC)
A test used to determine lung capacity, by measuring the amount of air that can be forcibly exhaled from the lungs, after taking the deepest breath possible.

Frontotemporal dementia (FTD)
A type of dementia that results in severe changes to thinking and behaviour. This happens for a small number of people with MND.

Gastrostomy tube
A feeding tube inserted through the abdomen and into the stomach, to help someone with swallowing difficulties receive liquid feeds and fluids. This type of feeding tube can be used over a long period of time.

Genes
Genes are the individual parts of a chromosome in each cell of your body.  They tell each cell how to appear and behave, including our physical traits and features.

Genetic mutation
A change in a gene is called a mutation, also known as a faulty gene. At some point the faulty gene may alter the way something in your body works.

Gynaecomastia
This is a symptom that can be experienced with Kennedy's disease, that can cause excessive breast development in someone born male.

Hereditary MND
Another way to describe inherited MND, where there is a family history of the disease (about 1 in 10 cases). This does not necessarily mean another family member will get the disease.

Inherited MND
This is used to describe MND where there is a family history of the disease (about 1 in 10 cases). This does not necessarily mean another family member will get the disease.

Kennedy's disease
A rare disorder of the motor neurones caused by a genetic mutation. This condition can be confused with MND at diagnosis, as they have similar symptoms that affect movement. Kennedy's disease also includes hormonal change. The MND Association supports people with or affected by Kennedy's.

Laryngospasm
A short spasm of the vocal cords that temporarily makes it difficult to speak or breathe.

Life-sustaining treatment
A treatment that may be keeping you alive.

Lower motor neurones
Lower motor neurones begin in the spinal cord. They send messages in the body to tell muscles to move. These messages are received from the upper motor neurones which begin in the brain and end in the spinal cord. When motor neurones are damaged and the messages cannot get through, muscles can no longer move.

Magnetic resonance imaging (MRI)
A scan which involves lying inside a large tube-shaped machine that produces detailed images of the inside of the body. It is used to rule out anything abnormal in the brain and spine that might produce the same symptoms as MND.

Mechanical Insufflation-Exsufflation (MI-E)
A mechanical device that helps someone cough to clear airways. It uses a mask, mouth-piece, or tracheostomy connector to provide air pressure that can be released as a cough.

Motor neurone
When you want to move, motor neurones are the nerves that carry messages from your brain and spinal cord to tell your muscles what to do. When motor neurones are damaged, the messages cannot get through and the relevant muscles will no longer work.

Motor neurone disease (MND)
MND is used as the short name for motor neurone disease. It is also a general term to cover the different forms of this neurological disease. This neurological condition damages the nerves that control voluntary movement, which are called motor neurones. This gets worse over time and can affect how a person moves, walks, talks, eats, drinks and breathes.  For some, it also affects how they think and behave.

Nasogastric tube (NG)
A feeding tube that is inserted through the nose and down the throat into the stomach. This can be used to receive liquid feeds and fluids if someone has swallowing difficulties. Usually a short term solution – see PEG, RIG and PIG for details about other types of tube feeding, used for longer periods of time.

Nerve conduction test
This test uses small patches placed on the skin to check the speed of electrical signals in the peripheral nerves.

Non-invasive positive pressure ventilation (NIPPV).
Another way of describing non-invasive ventilation (NIV), used for support with breathing problems. This is where a machine helps push air flow into the lungs, through a face or nose mask.

Non-invasive ventilation (NIV)
NIV is used for support with breathing problems, where a machine helps push air flow into the lungs, through a face or nose mask.

Parenteral feeding
When nutrition or fluids are given through a traditional intravenous (IV) line.

Peripheral nerves
Nerves in your body that exist outside of the brain and spinal cord. With MND, it is the motor nerves that are affected, which control movement.

Percutaneous endoscopic gastrostomy (PEG)
A PEG tube is inserted into the stomach through the abdomen, to help with liquid feeds and fluids if someone has swallowing difficulties. See also Per-oral image-guided gastrostomy (PIG) and Radiologically inserted gastrostomy (RIG) - these all support the same task of tube feeding, but each is fitted in a different way.

Per-oral image-guided gastrostomy (PIG)
A PIG tube is inserted into the stomach through the abdomen, to help with liquid feeds and fluids if someone has swallowing difficulties. See also Percutaneous endoscopic gastrostomy (PEG) and Radiologically inserted gastrostomy (RIG) - these all support the same task of tube feeding, but each is fitted in a different way.

Primary lateral sclerosis (PLS)
A form of MND that causes weakness in the lower limbs, although some people may experience clumsiness in the hands and speech problems. PLS progresses slowly.

Progressive bulbar palsy (PBP)
Also known as bulbar onset MND, this type of MND affects a smaller number of people than typical ALS, and mainly affects the muscles of the face, throat and tongue. Early symptoms may include slurring of speech or difficulty swallowing.

Progressive muscular atrophy (PMA)
A type of MND that affects only a small number of people. Early symptoms usually show as weakness or clumsiness of the hands.

Pseudo-bulbar affect
Also known as emotional lability. This refers to a symptom that can happen for some people with MND, where you may laugh or cry in ways that feel inappropriate. It can be difficult to stop and often does not reflect how you feel.

Radiologically inserted gastrostomy (RIG)
A RIG tube is inserted into the stomach through the abdomen, to help with liquid feeds and fluids if someone has swallowing difficulties. See also Percutaneous endoscopic gastrostomy (PEG) and Per-oral image-guided gastrostomy (PIG) - these all do the same task, but each is fitted in a different way.

Riluzole
A drug licensed for treating MND in the UK. This drug may slow down the progression of the disease and increase survival by several months. It is not a cure and cannot reverse damage to motor neurones which have already been affected.

Sialorrhoea
If it becomes difficult to control saliva flow, saliva can pool in the mouth and cause drooling. Medication can help.

Spasm
An involuntary tightening of a muscle or muscles, that contracts suddenly.

Spinal bulbar muscular atrophy (SBMA)
Another name for Kennedy’s disease.

Sporadic MND
Where MND has been diagnosed, but there is no evidence of a family history of the disease, it is known as sporadic. See also familial MND, inherited MND and hereditary MND, which all refer to MND happening more than once in the same family. Having a family history of MND does not necessarily mean the disease will be passed on.

Testosterone
A male sex hormone that may be affected with Kennedy’s disease.

Tracheostomy
An opening made at the front of the neck to insert a tube into the windpipe (trachea) to help you breathe.

Upper motor neurones
Upper motor neurones begin in the brain and travel to the spinal cord. They control muscles in the face, mouth and throat. They also send messages to the lower motor neurones, which start in the spinal cord and reach out to muscles in the body. These messages tell muscles to move. When motor neurones are damaged and the messages cannot get through, muscles can no longer move.

Urinary urgency
Feeling that you need to use the toilet to pee (urinate) more than you would expect.

X-linked bulbospinal neuropathy
Another name for Kennedy’s disease.

Advocate
Anyone who can help raise awareness of your needs in discussions about your treatment or care.

Attendance Allowance (AA)
A tax-free benefit for people aged 65 or over who need help with personal care because they are physically or mentally disabled.

Augmentative and alternative communication (AAC)
Communication methods used to supplement or replace speech or writing for those with communication difficulties. This includes simple solutions such as alphabet boards and notepads, and computer-based communication like eye tracking software.

Allied health professional
Allied health professionals are key members of healthcare teams.

Benefits
Various amounts of financial support are available as benefits from the Government, your local authority (England and Wales), or your local health and social care trust (Northern Ireland). You may qualify if you are disabled, a carer or have a low income. Disability benefits, such as Personal Independence Payment (PIP) are provided in addition to any social care services you may receive following a needs assessment. See our Benefits Advice Service for help with claims.

Citizens Advice
A free information service to help people resolve their legal, money and other problems across the UK. Previously named Citizens Advice Bureau or CAB.

Care Quality Commission (CQC)
From the Department of Health and Social Care, this organisation helps regulate and inspect health and social care services in England.

Carer's assessment
An assessment from adult social care services to work out if you qualify for their support in your role as an unpaid carer.

Community care assessment
An assessment from adult social care services in Northern Ireland, to work out what your needs are, and whether you qualify for support. In England and Wales this is known as a needs assessment.

Department of Health and Social Care (DHSC)
Government department responsible for the NHS, public health and adult social care matters.

Department for Work and Pensions (DWP)
The Department for Work and Pensions (DWP) is responsible for welfare, pensions and child maintenance policy.

Direct payments
An agreed amount of money for social care support (known as your personal budget in England), received as direct payments into your bank account. This means you can select and buy services for yourself, rather than having services arranged for you.

Disability and Carers Service (DCS)
Part of the Pension, Disability and Carers Service (PDCS), within the Department for Work and Pensions (DWP).

Disabled Facilities Grant (DFG)
A means-tested local council grant to help towards the cost of adapting the home to enable a disabled person to continue to live there. A grant is awarded when the council considers that changes are necessary to meet the person’s needs and that the work is reasonable and practical.

Disability Living Allowance (DLA)
A tax-free benefit to support disabled people, which has been replaced for most adults by Personal Independence Payment (PIP).

District nurse (also known as a community nurse)
A nurse who provides nursing care to people in their own homes, care homes or health centres.

Employment and Support Allowance (ESA)
A benefit to help with living costs if you are unable to work due to a disability or health condition.

Health and social care professional (HSCP)
A professional who works in a clinical setting, such as a doctor or speech and language therapist. Or a professional who works in a social care setting, such as an occupational therapist or social worker.

Integrated Care Systems
Regional partnerships, that bring together providers and commissioners of NHS services, with local authorities and relevant partners. They plan, co-ordinate and commission health and care services.

Integrated Personal Budget (England only)
Pilots are ongoing in England to use a combined budget for both healthcare and social care needs.

Individual Service Fund (ISF) (England only)
If you receive direct payments in England for social care through a 'third party' organisation, agency or provider, this is known as using an Individual Service Fund (ISF). The ISF books and pays for services agreed in your support plan, in line with your wishes and the budget available.

Means test
A financial assessment that looks at your income and savings. For social care support, means testing in England and Wales works out what your local authority will pay towards agreed services, and how much you need to pay. In Northern Ireland you will not be means tested for care in your own home, but you will be to live in a nursing home.

Mental capacity
The ability to make or communicate a decision, usually about treatment, care or finance.

Mental Capacity Act (MCA)
The Mental Capacity Act 2005 is designed to protect and empower people in England and Wales who cannot make or communicate decisions, or need support to do so.

Message banking
Where you record messages or sounds, such as laughter, that can be used on computer-based communication aids. If you get speech problems, these messages can be played back in the future.

Multidisciplinary team (MDT)
A group of professionals from different disciplines who provide a team approach to the care of a person with MND.

Neurological Alliance (NA)
A forum of not-for-profit organisations and groups, representing people affected by neurological conditions in England.

National Health Service (NHS)
The UK’s publicly funded health service. Everyone in the UK can use this service without having to pay or pay the full cost of their treatment. There’s more than one NHS in the UK, with NHS England, NHS Wales (GIG Cymru), NHS Scotland and in Northern Ireland it's called Health and Social Care Services (HSC).

NHS continuing healthcare (NHS CHC)
NHS continuing healthcare (CHC) is a package of ongoing care for urgent or complex health conditions. It is arranged and funded by the NHS and usually covers both health and social care needs. It can be received in a care home, hospice or where the person is living.

National Institute for Health and Care Excellence (NICE)
NICE provides national guidance and advice to improve health and social care. This includes whether drugs and treatments should be prescribed for particular conditions. NICE guidelines make recommendations about care to professionals and NICE guideline 42 refers to the management of MND.

Needs assessment
An assessment from adult social care services in England and Wales, to work out what your needs are, and whether you qualify for support. In Northern Ireland, this is called a community care assessment.

Occupational therapist (OT)
A professional who helps disabled people carry out everyday tasks, with as much confidence and independence as possible, for as long as possible.

Palliative care
Specialist care, focused on improving quality of life for people with life-shortening conditions. This can include symptom control and support for physical, psychological, social, spiritual, religious or other needs.

Patient Information Forum (PIF)
An organisation that champions trustworthy health information and runs the PIF Tick quality mark (the MND Association's information for people with or affected by MND or Kennedy's disease is accredited through the PIF Tick).

Personal budget
An agreed and financially assessed amount of money from adult social care services, to provide you with social care support in England. You may need to pay towards this. It works in a similar way in Wales and Northern Ireland, but they don't use the term 'personal budget'.

Personal health budget (PHB)
An amount of money to support your health and wellbeing needs. Your healthcare is still provided free, as normal, but you can use this amount to select services of your own choice, such as physiotherapy. You will be assessed for the services you need, but not financially assessed, as the NHS pays for this funding.

Personal Independence Payment (PIP)
A benefit to help people aged under 65 with extra costs if they are disabled or have a long term condition.

Personalisation
The government uses this word to describe how you should have full choice and control about how your needs are met, as everyone is different. Known in Northern Ireland as self directed support.

Personal wheelchair budget (PWB)
A form of NHS personal health budget in England, which allows posture and mobility needs to be included in wider care planning. This can enable you to access more choices of wheelchair.

Primary care
Day-to-day local healthcare. You generally receive primary care from your GP, chemist, community nurse and dentist. See also secondary care. You cannot use personal health budgets for primary care.

ReSPECT
A form that you fill out with a healthcare professional to provide guidance about your care and treatment in an emergency. It is not legally binding, but can be used anywhere in the UK. The full title is Recommended Summary Plan for Emergency Care and Treatment, but it is commonly known as the ReSPECT form.

Secondary care
Provided by specialist healthcare professionals. You usually need to be referred to secondary care services by your GP or another health or social care professional. Examples of secondary care include physiotherapy, speech and language therapy, occupational therapy and community nursing care. Personal health budgets can be used for secondary care services in England.

Social worker
A professional who helps disadvantaged individuals, families, and groups of people to improve their quality of life.

Speech and language therapist (SLT or SaLT)
A professional who can assess and help support people who have difficulties with communication, eating, drinking or swallowing.

Special interest group (SIG)
A group of professionals, including people living with or affected by MND, who wish to share their knowledge on a chosen subject.

Special Rules for Terminal Illness (SRTI)
The fast-track process for claiming benefits if someone has a terminal illness and meets the given criteria. This requires a DS1500 or SR1 form to be signed by a medical professional.

Universal Credit (UC)
A means-tested benefit to support people of working age on a low income.

Voice banking
Where your voice is recorded (banked) so that it can be used to create a digital version of your voice. If you have problems with speech, this version of your voice can be used on computer-based communication aids in the future.

Area support co-ordinator (ASC)
The ASC ensures people affected by MND are supported in accordance with their needs. They work with regional health and social care staff and support volunteers.

APPG - All Party Parliamentary Group (on MND)
A cross-party group of MPs and Peers with an interest in MND. The MND Association provides the secretariat, helping to arrange meetings and keeping track of its members.

Association visitor (AV)
Where available, our trained volunteer Association visitors help people living with MND and their families. They help provide information, guidance and emotional support by home visit, telephone or email contact.

Association visitor co-ordinator (AVC)
Association visitors who take on additional duties in some areas, including mentoring and buddying new AVs, attending multidisciplinary team meetings, organising support meetings for AVs and people with MND and acting as branch contact.

Board of Trustees
A group of volunteers elected or co-opted to be responsible for the governance of the Association, helping to shape its broad policies.

Campaigns contact
A trained campaigns volunteer attached to an MND Association branch or group.

Charity Commission
Regulates the administration and affairs of registered UK charities.

Care centre co-ordinator
Main contact at an MND care centre or network, co-ordinating care for people with MND who attend appointments there.

Charitable trust
A trust dedicated to charitable goals.

Gift aid
A Government run scheme that allows charities to reclaim the tax on donations.

Gift aid declaration
A declaration from a donor that enables a charity to claim gift aid.

Head of regional care partnerships (HoRCP)
Leads our delivery of MND Association strategy at a regional and local level and manages our regional care staff in their area.

International Alliance
A professional forum for the exchange of information on all aspects of the disease. The International Alliance provides a community for ALS/MND Associations across the world.

Quality of life (QoL)
Describes the standard of health, comfort, satisfaction or wellbeing for an individual or group. This can be applied to an aspect of daily living or a person’s general state of being.

Regional fundraiser (RF)
Fundraiser within a region, who develops relationships at all levels.

Service development manager (SDM)
Manages regional relationships to help develop and improve local services, by identifying opportunities and gaps in service provision.

Tribute Fund
An online space where family and friends can remember someone special and raise money to fight MND in their memory. These web pages, hosted by the MND Association, are easy to personalise with stories and photos to celebrate a loved one.

AMBRoSIA  - A Multicentre Biomarker Resource Strategy In ALS
A research project searching for biomarkers of MND.

Amyotrophic Lateral Sclerosis online genetic Database (ALSoD)
A database that stores information about all known genetic mutations linked to MND.

Association of Medical Research Charities (AMRC)
A membership organisation of the leading medical and health research charities in the UK.

BioMOx - The Oxford study for biomarkers in MND/ALS
A study that aims to discover a test to speed up the diagnosis of MND, to understand how the disease begins and spreads, and monitor its progression.

Biomedical Research Advisory Panel (BRAP)
This panel meets twice a year (Apr/Oct) to review biomedical research applications which are received by the Association. If approved by the Panel, they are then presented to the Board of Trustees for their ratification.

Coping And Living well with MND study (CALM)
The aim of this study is to evaluate the usability, acceptability and engagement of the CALM website intervention.

DeNDRoN - Dementia and Neurodegenerative Diseases Research Network
DeNDRoN is part of the National Institute for Health Research (NIHR) Clinical Research Network (CRN), supporting research in the NHS in neurodegenerative diseases.

DiAMoND - Decision aid for people living with MND considering gastrostomy
The aim of this project is to develop a web-based decision aid to help people with MND decide whether to have a feeding tube fitted.

Data and Safety Monitoring Board
An impartial group that oversees a clinical trial and reviews the results to see if they are acceptable. This group determines if the trial should be changed or closed.

European Federation of Neurological Societies
An organisation that unites and supports neurologists across the whole of Europe.

FaTHoM - Families for the Treatment of Hereditary MND
A research initiative to bring together the community of families affected by inherited forms of MND.

Genetic Interest Group (GIG)
A London-based national alliance of organisations which support families and individuals affected by genetic disorders

Human Fertilisation and Embryology Bill (HFE)
An Act of Parliament to ensure regulation of processes for the creation of human embryos outside of the body.

MAGNET - Multi-arm, Adaptive, Group-sequential, trial NETwork
A trial helping to investigate multiple treatments at the same time. Lithium carbonate is the first promising candidate therapy to be studied using the MAGNET trial.

MIROCALS - Modifying Immune Response and Outcomes in Amyotrophic Lateral Sclerosis
A clinical trial taking place in the UK and France, testing the safety and effectiveness of a drug called Interleukin-2 (IL-2) in people with ALS.

MND-SMART
A trial helping to investigate multiple treatments at the same time. Two drugs, memantine and trazodone, are the first candidate therapies to be studied in MND-SMART.

Medical Research Council (MRC)
The Medical Research Council (MRC) is a publicly funded organisation dedicated to improving human health. The MRC also work in partnership with charities, including the MND Association.

Project MinE
Aimed at detecting genetic causes and risk factors for MND. An international research initiative to sequence the genomes of people with MND

Sheffield Institute for Translational Neuroscience (SITraN)
One of the world-leading centres for research into motor neurone disease.

Treatment and Research Initiative to Cure ALS (TRICALS)
The largest European MND research initiative to date, including the UK, Australia and Canada.

The Trajectories of Outcome in Neurological Conditions (TONiC)
A national study examining what affects quality of life for patients with neurological conditions.

Tauroursodeoxycholic acid (TUDCA)
TUDCA-ALS is a clinical trial taking place in the UK and Europe, testing the safety and effectiveness of TUDCA as an add on treatment for people with ALS.