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Working with your Doctor
Building a trusting relationship with your doctor is an important part of any illness management plan. This is especially the case when you have a complex and long-term illness like Myalgic Encephalomyelitis /Chronic Fatigue Syndrome and may also have other comorbidities.
ME/CFS can be a challenging illness for doctors. They may not have received any training in ME/CFS, nor be aware of the current clinical guidance. Also, ME/CFS can present differently in each person and there are limited treatments available. This situation can lead to frustration for both the doctor and the patient.
An informed GP with a good understanding of your situation, may be able to refer you to other health services and can provide medical evidence for a range of financial supports from Work and Income and information for employers.
We have put together some tips that may help you to partner with your doctor, to share the lived experience, and to ensure that the doctor is aware of current and emerging evidence-informed practice.
Clinical Advice for GPs about ME/CFS
'HealthPathways' is an online system from Health NZ that GPs log into to view best-practice clinical advice for assessing and managing a wide range of health conditions and concerns.
Ask your health professionals if they have read the ME/CFS topic on HealthPathways recently, as it includes current best-practice clinical advice, based on the IOM 2015 diagnostic criteria and management guidelines from NICE, CDC, Mayo Clinic and ME/CFS expert clinicians.
The shorter, public version of the advice can be viewed at www.healthinfo.org.nz/Chronic-fatigue-syndrome-CFS.htm.
To encourage your health team to check it out, we have prepared a letter about the ME/CFS HealthPathway. Print this out, or send them the link, or email our office if you would like a copy of the letter posted out to you to take to your next GP appointment.
Finding a new GP
There are services around the region that can assist you with finding a local General Practitioner and other services. Ask them to recommend a GP who is taking new patients and supports and understands your health conditions:
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Tautoko Hauora in Canterbury
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Awawhenua Whanau Services in South Canterbury.
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West Coast Health for the West Coast.
The national www.healthpoint.co.nz website also has a search function to find local and online services.
Pegasus Health in Canterbury also provides useful advice about finding Your Best Care | Choose your best health care option.
It can be useful talking to other people living with the same health conditions about the health professionals that they have found helpful.
My Health Passport
My Health Passport is a booklet where you can write down information about how you want people to communicate with you and support you when you receive a health or disability service, including when you visit a medical centre or the hospital.
It is not a tool to help doctors diagnose or monitor patients, nor a substitute for a patient’s medical records. But it can be a useful way to get key information across, especially at a time when you may not be cognitively present to communicate well.
We have some A5 hard copies which we can provide to members. Please email us to post out to you, or you can pick up at a group meeting. Alternatively, you can download from the Health and Disability Commissioner website. They even have editable pdf versions, which you could edit and then print, or keep on your phone.