Glossary

Glossary

This glossary pulls together all the acronyms, initials and abbreviations you might come across when reading about MPS and related diseases. We have grouped these into categories with quick links to find help find the explanation you need. We will keep this up to date and add more explanations over time.

Looking for a particular abbreviation? Try our A-Z of abbreviations and acronyms.

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Education

Education Health and Care Plan (EHC Plan) – Is a plan that looks at all the needs a child or young person has within education, health and care, where needs are greater than that of a typical child. It is the duty of local authority to assess and implement the plan. Once a plan is in place, this will be reviewed annually.

Special Educational Need (SEN) – This is used to describe a child or young person, who has educational needs that require more support than that of a typical child. This may still be heard from time to time, but with the introduction of EHC Plans, this term is likely to be used less often.

Special Educational Needs and Disabilities (SEND) –This term specifically relates to children. If children have additional needs, there is support that can be provided during their years of schooling and in further education. A SENCo can support parents to understand the support and resources available.

Special Educational Needs Coordinator (SENCo) – These professionals generally have a teaching award and work in the school environment. They support teachers by working closely with educational psychologists and other professionals to provide advice on how best to overcome barriers to learning. They can provide an Individual Education Plan or other aids to be used in the classroom to support a child’s learning. They usually take a lead role in setting up and providing evidence of why an Education and Health Care plan is needed.

Award Scheme Development and Accreditation Network (ASDAN) – Is a charity who supports those suffering from poverty through a grant, to achieve and learn in certain colleges and schools throughout the United Kingdom.

Independent Parental Special Education Advice (IPSEA) – They are a registered charity who offer independent information, support and advice to help get the right education for children and young people who have SEN and disabilities.

Special Educational Needs and Disability Tribunal (SENDIST) – A panel that considers parents’ appeals about their children’s special educational needs, where an agreement could not be reached with the local education authority.

Local Education Authority (LEA) – Local councils in England and Wales that are responsible for education children and young people receive in their areas.

Parent Partnership (PP) – Also known in some areas as Special Educational Needs and Disability Information, Advice and Support (SENDIAS). A service required by law to provide families with information and advice. Some services can offer support with writing letters, or attending meetings.


Social Care and Mental Health

Children in Need (CIN) – Disabled children are automatically classed as Children in Need under s.17 Children Act 2014. Not all disabled children will become involved with the local authority. Families that feel they need some advice and information or access to support are usually referred. Referrals can be made by the family themselves, or by a professional. The Local Authority will gain further information to decide if child has an eligible need, so that they can provide information and services to them. Social workers will then carry out an assessment of need with the family, meet and observe the child and liaise with the other professionals involved, before making a plan to identify how the child and family can be supported. Once a plan has been made this will be reviewed every six months.

Team Around the Child (TAC) – This is a gathering of the main professionals from different backgrounds who work directly with the family. The professionals identified usually come from health, education and social care. The aim is to provide a wealth of information and support to the family that is greater than if the family were supported by just one person. The team and family meet at regular intervals to provide support and advice.

Children Act 1989 updated 2014, Section 47 (S.47) – Investigation into the safety and wellbeing of a child where concerns have been raised, that they are suffering from, or are likely to suffer from significant harm, or are being held in police protection. Children’s social care will talk to the parents and child separately and will gather information from the professionals who work directly with the child to determine the child’s needs and if they have been or are likely to be at risk of suffering from significant harm.

Common Assessment Framework (CAF) – Was a document that supported professionals to assess and identify the needs of children and families, so that services may be found and put in place at an earlier stage. Social work assessments are still completed using the headings of the common assessment framework triangle.

Children with Disabilities (CWD) – A term used to describe children who have a physical or neurological impairment. Often this term is used to distinguish specialist services for children.

Child Protection (CP) – A common term used in all government and private services that come into contact with children. Every person working in these sectors are responsible for ensuring the safety of a child. If the safety of a child comes into question this must be reported to social services, who will generally coordinate an investigation and may involve other agencies such as the police to determine if the child is safe.

Looked After Child (LAC) – There are two sections of law in which children can become looked after under the Children and Families Act 2014, these are s.20 and s.31. Children who have been placed either by their parents or by themselves into care are done so under s.20. Where it is believed that a child is at risk of significant harm or has suffered and will continue to suffer significant harm by responsible parents, are often removed and cared for by the authority under s.31.

Children’s Social Care (CSC) – Children’s social care is a government agency, who aim to support families that are in crisis, to prevent a breakdown within the family, by providing advice, services and support. They are the main agency responsible for safeguarding children, and where a child is at risk of significant harm, or has already experienced significant harm, they are duty bound by law to protect these children, by removal if necessary. Children’s social care are responsible for undertaking assessments to look at how the child may be best cared for, and managing ongoing care services and support. Some of the services may be placing children with different family members, into foster care or for adoption.

Joint Agency Referral Form (JARF) – This form is used in Wales, but particularly in Neath Port Talbot County Borough and was developed as a result of the Common Assessment Framework, by the Welsh Assembly Government. The form has been developed to support a number of professionals to think about and plan for the needs of children who have additional needs, or are at risk of poorer outcomes in comparison to those of a typical child.

The Deprivation of Liberty Safeguards (DOLS) – By law everyone has a right to their freedom, but in some cases a person’s freedom may need to be restricted, for their best interests, for example if they are required to stay in hospital or a care home. If someone was to be restricted or restrained to stay in a hospital or care setting this would need to be agreed by the local authority, once a series of assessments had occurred. If a person needed to be restrained or restricted in other setting then this can be agreed in a Court of Protection.

Court of Protection (COP) – They make decisions about people’s welfare and financial matters at times where people lack mental capacity. The court of protection can make a final decision as to if someone lacks capacity. They can appoint deputies who can make ongoing decisions for people, or can give people permission to make one off decisions, and can make emergency decisions where needed, to ensure the best interests of a person. They make decisions about lasting power of attorney or enduring power of attorney and decisions about when someone can be deprived of their freedom.

Independent Mental Capacity Advocate (IMCA) – These advocates are usually called upon when there is no one independent of services and family, they are only used for people who lack capacity to make decisions and choices about their own wellbeing. They support and represent the person who does not have capacity to make decisions, they will gather as much information as they can, and make decisions, based on this knowledge, the person’s rights and in their best interests, in line with the Mental Capacity Act 2005.


Health

Child and adolescent mental health service (CAMHS) – This is a specialist support and advice service, for children and young people with and from emotional and behavioural difficulties. Following an assessment the child and/or family may be offered counselling, play therapy, psychotherapy or family therapy.

Care Quality Commission (CQC) – They are the independent regulator for health and social care services. They set the standards of care that services are to meet and inspect, monitor and regulate services to ensure that they continue to meet standards, for the safety of their users. They rate services using the information that they gain and publish this information, so that services of a good standard can be chosen.

Decision Support Tool (DST) – This tool is used by healthcare professionals undertaking their assessment of someone who may need NHS Continuing Health Care funding or NHS Funded Nursing Care. There are twelve areas of need that are assessed. There are four areas of need in the assessment that alone trigger eligibility for the funding, or someone can have mixed needs, that add up to them being eligible for the funding.

NHS Continuing Health Care (CHC) – Is also known as NHS Continuing Care and fully funded NHS Care. The NHS provide funding for specialist medical care for children and adults, when they have more than just social care needs, where they require full time medical support, or specialist medical support, for example, just like they might get in a hospital environment. The aim of continuing care is to prevent people from being in hospital long term and to provide this complex care in the community. Support can be in the form of carers that provide care in the home, direct payments and personal health care budgets. In Scotland this is called Hospital Based Complex Clinical Care, and new guidance became effective as of the 1st June 2015.

Community learning disability team (CLDT) – These teams usually work with adults over the age of eighteen that have a recognised learning disability. Each authority have their own teams and the support they provide can vary. The majority of services will work directly with the person with the learning disability and their carers, to ensure that they have access to appropriate health services, leisure activities, information and advice, support them with the development of new skills and help them to develop a clear care and support plan.

Speech and Language Therapy (SALT) – Therapists who are trained in supporting people to improve their speech, they teach different ways of communication and can assess someone swallow and can determine how best someone can eat and drink.

Community Psychiatric Nurse (CPN) – They usually visit people in their homes or doctor surgeries. They listen and can provide support and practical advice to people that are emotionally and mentally distressed and unwell, to help them solve problems. These nurses are also able to administer medications, and monitor their effects.

Occupational Therapist (OT) – Professionals, who look at providing equipment and/or adaptations to the home for children and adults that struggle with certain tasks, such as writing, walking, concentrating, using a knife and fork, getting in and out of a bath or shower and so on.

Ear Nose and Throat (ENT) – Specialists, who can explore and offer solutions for common and uncommon problems such as deafness, including glue ear, snoring, sleep disorders such as sleep apnoea, and certain facial disorders such as cleft lip. A GP or Paediatric Consultant will usually make a referral to this specialist.

Multi-Disciplinary Team (MDT) – Is a term mainly used in the health sector, to describe a meeting whereby a range of different professionals from different medical and some social care backgrounds are invited to and attend meetings. The purpose of the meetings is to share information before a plan of action is made. Social care usually have similar meetings, which will involve the current professionals working with the family and call these meetings ‘Professionals meetings’.

Inherited Metabolic Disease (IMD) – Inherited metabolic diseases are a group of over 500 diseases where there is an affected gene causing enzyme deficiency. The MPS diseases and related conditions that the MPS Society support form part of this group.

Glycosaminoglycans (GAG) – Another name for Mucopolysaccharides.

Central Nervous System (CNS) – The central nervous system consists of the brain and the spinal cord. The central nervous system controls all body functions, by sending and receiving messages through nerves.

Attention Deficit Hyperactivity Disorder (ADHD) – People with the condition tend to have display behavioural symptoms of inattentiveness, impulsivity and hyperactivity.

Autistic Spectrum Disorder (ASD) – A condition that affects social behaviour, communication, interaction and interests.

Chronic Obstructive Pulmonary Disease (COPD) – This is a medical term for people that will have difficulty breathing, as a result of the narrowing of their airways. This condition is usually caused by diseases, and can result in someone becoming breathless when active, having a persistent cough with phlegm, or have frequent re-occurring chest infections.

Electrocardiogram (ECG) – A test usually carried out in hospitals to check the rhythm and electrical activity in the heart. There are three different types of test, but all of the tests are used to help diagnose any problems with the heart.

Echocardiogram (Echo) – An ultrasound scan is to look at the structure of the heart and the nearby blood vessels, to look at how blood moves through the vessels and is pumped around by the heart. The test is designed to detect a variety of heart conditions.

Magnetic Resonance Imaging (MRI) – This is a scanning device that allows detailed pictures of the body to be seen. The scanner can help to diagnose conditions, as well as assess what impact any treatments may have had on the body.

Continuous Positive Airway Pressure (CPAP) – A ventilation system which is used for those who have sleep apnoea to keep the airways from collapsing during night time.

Bilevel Positive Airway Pressure (BIPAP) – A ventilation system similar to CPAP, to help stop airways from collapsing at night time. The system differs as the pressure reduces on exhalation, so that the user can exhale more easily and feel more comfortable when breathing.

Enzyme Replacement Therapy (ERT) – To replace the missing enzyme, or top up residual enzymes, so that cells can function in a better way and reduce the symptoms and slow down the progression of a disease.

Hematopoietic Stem Cell Transplant (HSCT) – Known as a blood and marrow transplant. Stem cells are special cells that grow in bone marrow, that grow into blood cells. The purpose of a bone marrow or blood transplant is destroy unhealthy blood cells and replace them with stem cells from the blood or bone marrow.

Bone Marrow Transplant (BMT) – Bone marrow is the spongy centre of the bone. Healthy stem cells are taken from another person with the same or similar tissue type. These are then transferred to the person that needs the transplant.

Electroencephalogram (EEG) – A test to record brain activity. Small sensors are attached to the scalp to pick up electrical signals in the brain. The main use of the test is to detect and investigate epilepsy a condition that causes repeated seizures.


Housing

Disabled Facilities Grant (DFG) – Housing grant for adaptations, for people that have a disability and need to have a suitable kitchen and bedroom, or adapting fixtures and fittings, such as doors. The amount awarded for the grant will depend on the household income and any savings a family has, and vary between the United Kingdom.


Benefits

Disability Living Allowance (DLA) – A benefit for children, who have additional mobility and care needs. These allow parents to buy items needed for caring for children with disabilities including care provision.

Employment Support Allowance (ESA) – A benefit for those of working age, that are ill or disabled. The benefit can be financial, and provide support if you are out of work, or it can be used to help you develop skills to gain work.

Personal Independence Payment (PIP) – A benefit similar to DLA for adults, who have a long term illness or disability that hinders them from being able to carry out tasks needed for everyday living, or hinders their mobility. This benefit is reassessed at regular periods to ensure that the benefit is still needed.

Jobseekers Allowance (JSA) – A benefit that can be applied for, to help boost income whilst trying to gain employment. There are different amounts of entitlement that. The level of benefit received will depend on the person’s age, savings, and the household income. This benefit cannot be claimed if a person is already claiming universal credits.

Income Support (IS) – A benefit for those that live in England, Scotland and Wales. The benefit tops up a person’s income, for example if they are on a low income, have no income, and have saving under £16, 000. There is a strict eligibility criteria, and being in receipt of certain benefits such as ESA may impact an ability to claim this benefit.

Universal Credit (UC) – A benefit that allows a person to claim one benefit instead of claiming many different benefits, if they have a low income or are out of work. Currently this benefit is only available to those who are newly unemployed in certain areas of the United Kingdom.


Further Support

Information, Advice and Support (IAS) – Each local authority in England and Wales should have an IAS service, who can provide parents with more information about what they can expect from services. Their vision is that disabled children and young people, and those with SEN, and their parents, have access to high quality Information, Advice and Support Services, which are widely respected as an impartial source of information and support.


Hospitals

  • Salford Foundation Hospital – known as Salford
  • University Hospital Birmingham (UHB) – sometimes known as the Queen Elizabeth Hospital
  • Addenbrookes Hospital – known as Addenbrookes
  • Royal Free Hospital – known as Royal Free
  • National Hospital for Neurological Diseases – known as the National
  • Manchester Children’s Hospital (MCH)
  • Birmingham Children’s Hospital (BCH)
  • Great Ormond Street Hospital (GOSH)
  • University Hospital of Wales – sometimes referred to as Cardiff hospital
  • Royal Hospital for Sick Children – sometimes known as Glasgow Paediatric
  • City Hospital – sometimes referred to as Belfast Hospital

Medical Approval Agencies

European Medicines Agency (EMA) – This agency is based in London and began operating in 1995. They protect public and animal health in the EU Member states and the European Economic Area, by ensuring all medicines available on the EU market are safe, effective and of high quality.

Scottish Medicines Consortium (SMC) – To accept new medicines that represent good value to NHS Scotland.

American Food and Drug Administration (FDA) – They look at the safety, efficacy and security of human and animal drugs and are responsible for protecting public health.

The National Institute for Health and Care Excellence (NICE) – They provide national guidance and advice to improve health and social care. They are responsible for approving treatments that NHS England can use.