Managing life with Motor Neurone Disease (MND) can be easier with the support of a diverse group of health professionals and service providers.
Importantly, research indicates that multidisciplinary care can improve both quality and length of life.
Each health professional brings a specialised set of skills that helps the person with MND live better, for longer. Skills range from being able to provide help with breathing and diet, to finding ways of communicating, moving and using medications to manage symptoms.
To help you access the right help at the right time, often a group of health professionals will form what’s called a ‘multidisciplinary care team’.
Multidisciplinary care is a term used when a group of different health professionals work together to provide treatment and support specially tailored for the individual’s current needs. People with MND needs do change, and rate of progression can be different from one person to another, so having a team of professionals working to support you is important.
For people with MND, a multidisciplinary health care team usually includes:
Other team members who have particular expertise are involved as needed, such as a respiratory specialist, gastroenterologist and palliative care specialist.
In many areas of Australia, the MND advisor from your MND association liaises with the team, assisting you and the team to get information, support and referrals to other services when needs change.
Professionals providing multidisciplinary care can be from the same organisation, a range of organisations, or from private practice. They may work in the community, hospital, clinic, residential and other care settings.
Multidisciplinary teams providing health care and support outside a hospital are also known as primary health care teams. Each team member brings their own specialist knowledge to the team. The team members communicate with each other about your care and help you get care from other members of the team when you need it. This helps to support a coordinated approach to your care.
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People living with MND are likely to need advice about mobility, communication, breathing, nutrition, managing other symptoms and getting community support.
Multidisciplinary care helps to provide people living with MND with:
Importantly, multidisciplinary care provides you with a direct link to one person, who is a member of the team. Usually the person is referred to as a key worker, case manager, care coordinator, support coordinator or team coordinator. That person can advise you about regular review of symptoms and will help to coordinate your care.
Multidisciplinary care is available at several MND‐specific clinics in Adelaide, Brisbane, Canberra, Melbourne, Sydney, Launceston and Perth. Teams at MND clinics are very knowledgeable about what helps when living with MND. You will be provided with a coordinated, multidisciplinary approach to your care. Your MND clinic team and local primary health care team can communicate with each other to ensure coordinated professional approach to your care needs.
Many people live too far from an MND clinic to attend or may live outside the MND clinic’s area. If this is your situation, your multidisciplinary care can be provided by a local primary health care team. A primary health care team includes local health and community care professionals who provide a range of expertise, advice and support. Your primary health care team can liaise with your neurologist and/or your MND clinic, if you are attending one.
Community service providers include personal care workers or assistants to provide general household assistance, personal care such as showering and dressing, emotional support, care and companionship to people in their homes. These service providers may be funded and accessed via the NDIS or Aged Care system. See NDIS and MyAgedCare pages on website for more information. Case managers or support coordinators can assist people to access health and community services.
Dietitians provide advice about what kinds of food and drinks help with diet and MND as well as general nutritional advice.
The general practitioner (GP) is a doctor providing general medical care in the community. GPs are usually your first point of medical contact. The GP liaises with the neurologist and other health and community service providers.
State MND Association advisors help people with MND connect to the services they need. An MND advisor might, for example, help you find people who can assist with modifications to your home for moving around easier, or who to speak with about speech and communication. MND advisors also offer ongoing information to families and service providers as questions arise or needs change.
The neurologist is a doctor who specialises in disorders of the nervous system. The neurologist coordinates the tests you need and will confirm a diagnosis of MND. The neurologist also monitors the progress of the disease and management of your symptoms.
An occupational therapist (OT) helps to maintain mobility, function and independence. OTs provide advice about home modification, different ways of performing tasks and on selecting, acquiring and adapting specialised equipment.
The palliative care team specialises in interventions that can improve quality of life for people with life limiting conditions such as MND. Palliative care services provide symptom management and emotional support for people living with MND and their families and can assist you to plan your future care.
A physiotherapist helps you maintain physical activity and mobility. Physiotherapists can also show your family or carer how to safely help you move from one position to another, for example, moving from a chair to a bed. A physiotherapist can also help with techniques to support coughing and breathing.
The respiratory specialist is a doctor who specialises in disorders of the lungs and breathing. The respiratory specialist provides information, advice and guidance about how to support breathing for people living with motor neurone disease.
The role of the nurse is varied and can include ongoing care and care coordination, often for people in their own homes. Specialised MND nurses usually work in MND clinics and have particular expertise in MND symptom management.
A social worker, psychologist or accredited counsellor provides counselling on the psychological and emotional aspects of living with MND. In addition, a social worker can provide information on community services that may assist you with accommodation, legal, financial and other issues.
A speech pathologist helps in the management of communication and swallowing. They can advise about communication aids and devices and also about swallowing techniques and food consistency.
Telehealth is a way you can access health services and advice via the internet, phones and similar devices, including the use of Zoom, Skype and other videoconferencing platforms. The great thing about telehealth is that you can use it from the comfort of home.
Throughout 2020, the Australian Government has increased Medical Benefits Scheme (MBS) eligibility due to the COVID-19 pandemic, which has allowed telehealth to become more common place. The change was significant for helping make health services much more available across the country, and proven very useful for people living with MND.
Telehealth allows interactions and consultations with health professionals without the difficulties associated with getting to and from medical appointments. It also enables your carer and other family members to be involved in the consultation if you wish.
Talking to your GP is a good place to start if you would like to know more about what services can be accessed via telehealth.
Palliative Care Australia describes palliative care as helping “people live their life as fully and as comfortably as possible when living with a life-limiting or terminal illness.”
Palliative care has a very important role in the care of people living with MND and their families. It is beneficial from diagnosis onwards, as and when needed, and as part of multidisciplinary care. The aim of palliative care is to enable people living with MND and their families, to maintain as good a quality of life as possible and to help ensure a peaceful death.
A big part of palliative care is planning ahead – that is, thinking and making decisions about the future, and the reality of dealing with a life limiting illness.
Planning ahead for end of life provides opportunity to think about, discuss and make arrangements for your end of life care and helps to achieve a better quality of life. Planning ahead, with the support of a palliative care team or service, makes it more likely that your needs will be met because it:
It is normal to feel overwhelmed, fearful and worried about end of life care, but taking positive actions can help you feel more in control and can reduce anxiety about what your future holds. To learn more about your local palliative care services talk with your MND Advisor.
According to healthdirect, General Practitioners are:
“doctors who have completed training in general practice. They have broad knowledge and the skills to treat all the health issues you might have through your life. Because your GP gets to know you, your family and your community, they can provide care that is suitable just for you. If you have a health issue, the first person you usually go to see is your GP. They will decide whether you need to see another health professional. If needed, they will give you a referral to see a specialist in a certain medical area or refer you to other health professionals. You can’t get a Medicare rebate if you see a specialist without having a referral from your GP first. If you need to see several different health professionals, your GP will coordinate your care.”
Sometimes GPs are called local doctors but they play a vital role in caring for a person with MND. Most people already have a GP they see regularly, so the GP is likely to know you already.
It is very important, however, that you feel comfortable with your GP. If you don’t have a regular GP, or one you feel comfortable with, it may be time to investigate which GPs are available to you in your local area. Try reviewing the GP practices' website or even calling different practices to see if any of the doctors have experience with MND, or to simply check to see if they appear to be a good fit for you. For example, some people may feel more comfortable with a male or female GP, or with a GP that speaks their native language.
Making an appointment with a GP and having a discussion about your MND may be a good place to start and will help you decide if they are the GP for you.
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