People and places to help you
Here is a brief introduction to them, along with brief descriptions. Follow the links for further information or visit our Support hub to find out about services near you.
We have also produced a video showing the different members of a specialist neuromuscular multi-disciplinary team at a muscle centre and why each of their roles is important to manage the healthcare of someone affected by a muscle-wasting condition.
Responsible for co-ordinating the Local Education Authority’s (LEA’s) response to pupils with physical and medical difficulties. Works alongside teachers and the LEA.
Has knowledge of how to navigate social and health services because of personal experience – directly or indirectly – of a muscle-wasting condition. Helps you get the support you need for your health, independence and quality of life. Find out more about .
With a background in nursing, social care, physiotherapy or occupational therapy, provides practical and emotional support for families affected by muscle-wasting conditions.
A senior doctor who specialises in a particular field of medicine- for example, a consultant neurologist may see adults who have a muscle-wasting condition.
Advises on weight control, special diets, alternative feeding methods and nutrition. Your GP or hospital doctor can refer you to a dietician.
Disability employment adviser (DEA)
Based in the local Jobcentre Plus to help disabled people look for suitable work or training, or obtain funding through the Access to Work scheme (for equipment, assistance with commuting, or adaptations to the workplace.)
Provides nursing care in the community and may assess patients for nursing equipment (e.g pressure- relieving mattresses and adjustable beds)
Education welfare officer (EWO)
Works closely with schools and families to promote effective working relationships. May become involved in issues relating to school attendance.
Educational psychologist (EP)
Responsible for assessing a pupil’s special educational needs and ensuring that they receive any additional support required. Employed by the Local Education Authority.
General practitioner (GP)/ doctor
Manages day-to-day medical care and arranges referrals to specialist clinics and centres.
Specialises in the inheritance patterns of genetic conditions. Provides information and genetic counselling, and helps identify family members at risk.
Usually oversees the routine development of children under five years old, although some work in a specialist role with other groups (e.g the elderly)
Provides regular, practical assistance to disabled people. Assists with daily activities like washing, dressing, cooking and shopping. Works to a Care Plan agreed between the ‘client’ and his or her Social Worker/ Care Manager. Employed by social services or an agency.
Learning and Educational Support Assistant (LSA)/(ESA)
Helps the class teacher to ensure that children with special educational needs are well supported. Often assigned to work with one particular child.
Occupational therapist (OT)
Works with people of all ages who have a disability or severe injury. Provides information on managing daily living activities and assesments for equipment and housing adaptations. Employed by the NHS or social services. GPs, hospital doctors and Care advisors can help with referrals and it is sometimes it is possible to self-refer too.
A surgeon who specialises in problems with bone, joints and soft tissue problems. Surgeons are often referred to as Mr, Mrs or Ms- rather than Dr – but they are qualified doctors!
Specialises in assessing for and supplying orthoses (for example, supportive footwear or splints)
Doctors who specialise in working with children and the conditions affecting them. A child with muscle disease is likely to be seen by a Paediatric Neurologist.
Peer support volunteer
Has personal experience of living with a muscle-wasting condition, so can provide much needed support when you are given a diagnosis.
Advises on exercise and stretching to maintain mobility and comfort as well as handling techniques, posture and breathing exercises. Works in a hospital or community setting. Referrals are usually made by a GP or through a hospital.
Regional care advisor
Provides specialist information and support to those with muscle-wasting conditions who attend their clinics. Also liaises with other professionals and services to ensure that patients are receiving appropriate local support.
School medical officer
Also known as School Doctor or Community Paediatrician. Specialises in the care of young people up to age 19. Monitors developmental progress and contributes to discussions about a child’s special educational needs.
Social worker/care manager
Assesses and provides for social care needs, including personal and respite care and advice and support. Employed by local social services departments.
Special Educational Needs Co-ordinator are designated member of staff responsible for co-ordinating special educational needs provision within the school.
Specialist nurse/nurse practitioner
Some nurses specialise in particular areas, like genetics. These senior nurses are referred to as ‘clinical nurse specialists’.
Speech and language therapist (SALT)
Assists people with speech and language difficulties. Also advises on chewing, swallowing and eating issues. GPs and hospital doctors can arrange referrals.
Staffed by multi-disciplinary teams ensure that neuromuscular patients have access to the best diagnostic and medical care available, including support from our local care advisors.
The NeuroMuscular Centres offer physical therapies to people with muscular dystrophy and other neuromuscular conditions. They are two in the UK, in Cheshire and Centre Midlands.
Hydrotherapy is a therapy that involves the use of water for pain relief and treatment and can be essential in maintaining the best quality of life for many people living with muscular dystrophy or a related neuromuscular condition.