Following a diagnosis of Parkinson’s or any other neurological/movement disorder, you will become involved with many specialists and health professionals as part of your care.
You will have a multi-disciplinary team supporting your journey. Here’s some tips to make sure they’re the right fit for you.
Your GP may refer you to see a neurologist who specialises in the diagnosis and medical treatment of neurological conditions. They may also refer you to specialist allied health service such as a neuro-physiotherapist, speech pathologist or occupational therapist.
Specialists and health professionals will often report back to your GP, who may stay as your main contact and who coordinates your healthcare with input from specialists and other healthcare professionals as needed.
Once your doctor has given you a letter of referral, you can make an appointment to see a specialist at a specialist clinic within a public hospital or at a private clinic or hospital.
Fees vary and depend on whether the specialist:
- Works within the public or private healthcare system
- Bulk-bills under the Commonwealth Government’s Medical Benefits Scheme (MBS)
- Requires a gap payment
- Requires full payment with or without reimbursement via private health cover.
You will need a referral letter from your GP to be eligible for Medicare rebates.
Once you have a referral, a good relationship with your clinician can go a long way in helping you live your best life!
People who take an active role in their care may not only feel more satisfied with the medical and health professionals involved in their care, but may also feel more in control over their own health and wellbeing. Communication, respect and trust are keys to any healthy relationship.
Here are a few recommendations to help you build a more beneficial one with your clinician:
- Be prepared for the appointment
Taking time to prepare for an appointment with your clinician can help make the most of your time together. Before your visit, you may find it helpful to track your experiences for a couple of days recording when and how you take your medications and what symptoms you experience during an average 24-hour period.
- Ask your specialist questions
Bringing a written list of questions or issues you would like to discuss is recommended, particularly if you are feeling stressed about your diagnosis.-It’s best to prioritise your questions and start with the most important first, since clinicians often have limited time. A written list can also help your clinician address some questions later, either through a phone call or follow-up appointment for more complex issues.
-Include any changes to prescription and non-prescription medications you’re taking, including vitamins and supplements, and the dosages for each.
-Try to tailor the questions to the clinician you’re seeing. For a neurologist you may ask questions about medication side effects and worrying symptoms, whereas for your physiotherapist you may focus on difficulties with balance and freezing.
Examples of questions you may want to ask include:
-What is my diagnosis?
-What treatment do you recommend for me and why?
-How effective is this treatment?
-Are there any side effects or risks for the treatment? If so, what are they?
-What other treatment options do I have?
- Take a companion to your appointment
Bringing a friend or family member along can be extremely helpful when it comes to asking questions and clarifying information, especially for older people or anyone who is nervous about attending appointments.
- Be honest with your physician
Your clinician needs full disclosure in order to provide the best possible care. If you are not honest about things like embarrassing symptoms, cognitive issues or occasionally skipping your medications, your clinician won’t have accurate information, and that can affect your care. Be candid, and don’t feel embarrassed. Your medical and health professionals aren’t perfect, and they don’t expect you to be, either.
- Getting a second opinion
It is fine to see another provider to get a second opinion if you are not sure about a diagnosis or treatment your clinician suggests. This may involve getting another referral to a different clinician from your doctor.
Staying with a clinician you’re not happy with is as harmful as staying in a relationship you know is bad because it’s easier than making a change, however parting ways may be the healthiest move.
Signs you might need to ‘fire’ your doctor
Changing care providers can be a challenging process. Before you invest time figuring out how to switch providers, it’s important to analyse whether such a change is necessary.
Here are some signs it is time to fire your clinician:
- You and your clinician don’t mesh. You and your medical/health professional don’t need to see eye to eye on everything, but it’s helpful if you can work together. Some people prefer a clinician who is direct and to the point while others prefer more empathy and compassion with difficult news given gently. When there’s a mismatch, neither person is at fault – but it could be grounds for termination.
- You should never feel like you’re being rushed. If your clinician doesn’t take the time to answer your questions or address your concerns, there’s a problem.
- Your health is too important to feel confused or uninformed. A clinician should be open and thorough about why they recommend a certain treatment or order a specific test, plus share all results with you.
- A sense of unease about his or her decisions and recommendations, even if you can’t say exactly why, is also a perfectly legitimate reason for cutting the cord.
- A growing number of clinicians are making themselves available to patients via email, text message and Skype, and at the very least, you need to know that in a medical emergency, you won’t be left hanging.
- If your clinician trivializes your concerns as though they’re not valid, is rude or condescending it may mean you are not a good fit and it is time to move on. One of the clearest signs you should move on is if they walk out of the room while you’re still talking.
How do I change providers?
You may decide that you want to let your medical or health professional know why you have decided to leave their care. You can do that during an appointment, over the phone, or you could write a letter. Writing a letter can also serve as a formal request to have your health and medical records released to you or forwarded to your new provider(s).
THRF Group – Parkinson’s also can provide you with a list of geriatricians, neurologists and allied health professionals with a special interest and expertise in Parkinson’s and other neurological movement disorders.