To manage your ME/CFS well, you will need a number of different healthcare professionals to help you deal with your ME/CFS symptoms and any other health conditions you may have.
Many doctors and other healthcare professionals do not specialise in ME/CFS, but they can play a valuable part in your care and health management.
Remember you are the centre of your healthcare team and can choose:
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- who you want in the team
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- which treatment or care strategies you want to take on.
Creating your healthcare team
Your general practitioner (GP) will coordinate the healthcare professionals and others who are involved in your care. Some of these may include:
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- a medical specialist who will support your symptoms management plan
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- allied health professionals who support functional aspects of your condition
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- assessment and support staff
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- carers and family members.
What to consider
When choosing a team, remember that:
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- one doctor may not be able to manage all aspects of your care
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- each person’s opinion is valuable, as they may bring different ideas to your care and management plan
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- while you may not agree with each idea or even choose to go in the suggested direction, mutual respect is important for your ongoing relationships with your team
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- some team members may not provide ongoing direct care, but you might need to reach out to them in the future for a number of reasons, including asking for a letter of support, verification of your diagnosed conditions, confirmation of test results, treatment outcomes or even advice.
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- you are the centre of the team. If you don’t feel that a member of your team supports your current treatment goals, personal values or direction of care, you can move them away from the centre of your healthcare team to the outer circle, in case things change.
The shape of your healthcare team
It can be beneficial to think of your healthcare team as a set of four nested circles, with you at the centre. This is one suggestion to help you decide where you focus your energy from day to day, as you build and work with your healthcare team. You can also move team members between the circles when your care or management changes. You can use this, change it, or you may have something in place already.
The inner circle
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- The inner circle puts you at the centre. You are the most important person on your team. You are valuable, strong and your input into your care is important.
Your primary healthcare doctor sits alongside you in this circle. It is usually your GP, but there may be times when you decide there is a more suitable person for this position, such as a specialist. This is the person who will provide you with your primary care needs, routine bloods, general medical screens, public health advice and specialist referrals.
When filling this role on your team, ask yourself about:
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- access – Do you need home visits? Do you need them to be within a short distance from your home?
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- availability – Can you see them within a few days, or will you need to book weeks in advance?
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- cost – Can you afford ongoing care from this person? Do they bulk bill through Medicare? If not, what portion does Medicare cover and what is your out-of-pocket expense?
The last person in your inner circle of care is your personal support person, and their role is to be by your side and to support you. It may be your mother, father, sister, brother, partner, child, friend, medical power of attorney or a paid support staff member. Not everyone chooses to have a personal support person. The decision is entirely up to you.
Circle two
This circle contains your regular contacts; health professionals or support people that who you see regularly. They may include:
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- a specialist who manages aspects of your current care
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- allied health professionals who are involved in your ongoing management
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- carers, such as home help
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- close friends or family members who provide ongoing emotional or physical support, such as a friend who takes time to visit or cooks a meal for you.
Circle three
Circle three is for members of your healthcare team who you have occasional contact with. It may include someone you see for ongoing management, such as 6 or 12-monthly appointments for assessment, intervention or review.
Circle four
This circle is for members of your team who you don’t have contact with at the moment. They may help in the future, but they are not part of your regular, ongoing management and care.
It may include:
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- a specialist who has made a diagnosis or treatment plan that is now managed by your primary doctor. However, you may call on them in the future if your symptoms flair, new treatment within their specialty becomes of interest or you need evidence from them
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- allied health professionals who are not currently providing care to you, but might in the future
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- a team member you disagree with and no longer wish for them to be involved in your care. They may be of unexpected use in the future.
How to get support in building your healthcare team
Our Telehealth Nurse Service provides free consultations where you can get assistance and guidance on how to build your healthcare team.
