Throughout your journey you will come across various healthcare professionals that may be helpful in your path from diagnosis to living with the condition. They all have different roles in supporting your care/care of your loved one and may be involved for varied lengths of time.

The diagram displays the professionals who may be involved in your care and applies to both children and adults.

Please be aware that not all professionals listed may be involved in your care/loved one’s care as this will be dependent on age, affecting condition and personal health.

  • Specialist doctors: Community Paediatrician, Neurologist, Metabolic Consultant, Neurologist who specialises in leukodystrophy or inherited white matter disorders (IWMDs)
  • Lead professional: coordinates the meeting, usually the Community Nurse or Social Worker
  • Social worker: provides support with access to services, e.g. care, education, liaises with care agencies
  • General practitioner (GP): your local doctor
  • Physiotherapist: provides support to those with mobility issues through movement and exercise, manual therapy, education and advice
  • Dietician: specialist in nutrition and tube feeding for people who are unable to take food by mouth safely
  • Ophthalmologist: specialist in eye and vision care; can diagnose and treat eye conditions
  • Genetic counsellor: provides support, information and advice about genetic conditions
  • School/college representative: also may be Special Educational Needs representative
  • Occupational therapist: support with practical measures, help with home adaptations to help manage everyday tasks and equipment needed within the home
  • Speech and language therapist: specialist in communication and feeding problems
  • Community nurses: specialists in caring for sick children and adults in home and community settings
  • Continuing health care nurse: delivers Continuing Health Care (CHC), which is a package of care for those with significant ongoing healthcare needs
  • Palliative team: specialists in managing pain and providing psychological, social, spiritual and end of life support for those with serious illnesses