How to build your HS healthcare team

General practitioner 

Your general practitioner (GP) can help you determine who you need to see. This decision is usually based on the symptoms that concern you most. 

Your GP will be an essential member of your team, so it is ideal to have one you like and trust. They can help you with many aspects of your care, including educating you about your condition and treatments and tracking your progress. Your GP can also set up a Chronic Disease Management Plan and/or a Mental Health Treatment Plan to help cover the cost of relevant allied health services. 

Specialist clinicians 

A dermatologist specialises in conditions that affect the skin, hair and nails, including HS. They work with you and your GP to create an individualised treatment plan to control your symptoms, reduce flare-ups and improve your quality of life. Dermatologists have the authority to prescribe advanced medications, such as biologics, to treat your HS. 

Not all dermatologists are familiar with HS and its treatment options. However, finding one who understands HS can make a big difference. In Australia, only dermatologists can give a definitive diagnosis of HS. 

An endocrinologist is a medical specialist who treats conditions caused by problems with endocrine glands and hormones. Sex hormones such as oestrogen, progesterone and testosterone can affect HS disease activity. HS is linked to other hormone-related conditions, like polycystic ovarian syndrome and insulin resistance, though the exact connections are not yet clear. 

Endocrinologists can help with HS by prescribing hormonal therapies, such as spironolactone, finasteride or combined oral contraceptives, to manage flares linked to menstrual cycles and androgen excess. 

An obstetrician-gynaecologist (OB/GYN) is a doctor who specialises in pregnancy, childbirth and a woman’s reproductive system. OB/GYNs are sometimes the first health professionals to notice HS symptoms in women during routine appointments. They can assist with basic treatments, refer patients to dermatologists and support HS patients with pregnancy and fertility management. 

A plastic surgeon is a specialised surgeon who reconstructs, restores or alters parts of the body to improve function and appearance. You may need a plastic surgeon to remove HS-affected tissue to alleviate your symptoms, promote faster healing or reduce scarring. 

A pain management specialist is a medical doctor who assesses, diagnoses and treats acute, chronic, and cancer-related pain, focusing on improving patient function and quality of life. If your HS pain is not well-managed by your HS treatments, a pain management specialist can work with your team and help you find other ways to find relief. 

A general physician specialises in the care of patients with multiple or complex disorders. They can assist with the diagnosis of difficult problems, the management of interacting conditions or medications and the assessment and preparation of patients with serious medical issues requiring surgery. 

Having HS increases your risk of developing related conditions, including lupus, inflammatory bowel disease, rheumatoid arthritis, diabetes or high blood pressure. Therefore, you may need other specialists on your team, such as a rheumatologist, cardiologist or gastroenterologist. 

Some often overlooked, but beneficial members of your support team could be your specialist’s personal assistant, nurse practitioners, and pathology nurses. Practice nurses at medical clinics can assist with general clinical care and chronic condition management. They can also help you with HS wound care management. 

If you’re dealing with chronic or severe wounds, ask your dermatologist or GP for a referral to a wound care clinic. Specialist nurses at these clinics can provide advanced care tailored to your needs. 

Your local pharmacist should be an essential part of your team. They can give you advice on your medications, answer questions about general medical concerns, keep track of your prescriptions and much more. 

An occupational therapist can help by finding ways to help you participate in the “occupations” of your daily life. This could be at your workplace, but it could also be any task or activity you regularly engage in, such as shopping, driving or socialising. They may suggest modifications to your physical environment or changes to your activity to help manage your HS pain or fatigue and support your general health and wellbeing. 

If you think certain foods may trigger your HS symptoms, or you would like advice on eating well for your general health, consider seeing a dietitian. They can show you how to establish a nutritious meal plan that works with, rather than against, your conditions and medications. 

You may want a psychologist or psychiatrist on your team. Both can treat a wide range of mental health issues using approaches like cognitive behaviour therapy. Both have studied extensively, but a simple way to distinguish them is that psychiatrists can prescribe medication. They will work with you over a series of appointments and give you the coping tools you will need to handle all the stressful issues that come with having a painful, chronic and unsightly condition such as HS.

Your support team doesn’t have to only include health professionals. Think about including the people closest to you, such as your partner, favourite relatives, close friends, carer or anyone else you know who will help you with your day-to-day needs. They will give you the physical or emotional support you will need to help manage the bad days as well as the good ones. 

Peer support groups are full of people going through challenges similar to yours. They may meet in person or online. Members can share tips for coping with issues such as wound care and social stigma. You can share your experiences and ask questions in a friendly and non-judgemental environment. 

Hidradenitis Suppurativa Australia is an Australian not-for-profit organisation dedicated to working together with medical professionals, patients, researchers and the general public to improve the lives of those living with HS. Whether you’ve just been diagnosed, are awaiting answers or have been living with HS for years, the Hidradenitis Suppurativa Australia community will welcome you. 

You could also consider joining a group with a broader demographic, such as people with chronic skin conditions.

Your GP can help you choose your main team members. They will consider your needs and circumstances and refer you to the appropriate specialists. You can also ask people you trust, such as a family member, friend or someone in your support group, for recommendations. 

Choosing the right person for your team is a bit like hiring a new employee. First impressions and gut feelings do count. Sometimes you connect with somebody instantly, and other times your instinct may tell you to steer clear. 

It’s a good idea to create a shortlist of practitioners you are considering for various roles in your team. Check their credentials and see if they are members of professional associations. You can even give them a test run by booking an initial appointment before deciding whether to come back to them regularly.

If your team is going to function effectively, each member needs to be someone you trust, who listens to you, takes you seriously and makes decisions with you, not for you. Ideally, they are all aware of one another and willing to work together. 

If you don’t feel comfortable with that person or disagree with their approach, you are perfectly entitled to seek a second opinion. You don’t have to use a specialist that your GP referred you to if you don’t want to. You also don’t have to stick to the same GP if you feel they are not meeting your health care needs. 

It is quite acceptable to book an initial appointment with a different practitioner to see if they are a better fit for you. You are also entitled to have your records transferred to your new practitioner. Don’t be embarrassed about it; it is a common practice, and they are unlikely to take it personally.

Your GP will have lists of many other healthcare providers in your area. 

Organisations such as the Skin Health Institute, Hormones Australia, the Australasian College of Dermatologists and other related professional associations maintain lists of service providers across many areas. You can browse their websites or call their support phone lines. 

There are many online directories, including the Federal Government’s healthdirect website, catering to different fields of health care. Often, you simply need to enter your postcode and the site will automatically generate a list of service providers near you. 

The people in your peer support groups can give personal recommendations for a range of practitioners. Keep in mind that we are all different, and you may not like the person that your friend suggests. 

Medicare provides a range of options to help you cover the cost of your health care. You can claim some or all of the cost of seeing a GP and many other healthcare providers. Sometimes you may have to pay the difference between Medicare’s scheduled fee and the provider’s actual fee. 

If you have a pension or allowance from Centrelink, you may be entitled to a Pensioner Concession Card or a Health Care Card. These entitle you to discounts for many health services and products. 

Australian federal and state governments provide an extensive range of support services and financial benefits for people with chronic conditions. You can also access other supports through local health and community organisations. 

Private health insurance (PHI) hospital cover allows you to be treated in any Australian hospital as a private patient. You can also choose to have private extras cover to help pay for out-of-hospital healthcare costs that Medicare doesn’t cover, such as allied health services. PHI benefits depend on the level of cover in your policy. It is important to check what is included and excluded in your policy. There may also be gaps between service fees and your PHI benefits for things like in-hospital procedures and private allied health services. 

Although PHI can be expensive, benefits include shorter treatment waiting times, a choice of doctor, a private hospital room and avoidance of some tax charges. Many insurers also offer additional member benefits such as telehealth and nursing services, discounts on gym memberships, health products and mental health support. 

Sadly, stigma still exists in healthcare settings. Some professionals may not fully understand HS, leading them to offer you insensitive or misguided advice. Find healthcare providers who understand HS by asking about their experience, searching online, or getting recommendations from others with HS. 

• Advocate for yourself: If a healthcare professional makes you feel uncomfortable or disrespected, you should speak up. Discuss your concerns with your doctor or health service first. If that does not resolve the issue, you can contact the Health Complaints Commissioner in your state or territory, the Australian Health Practitioner Regulation Agency (AHPRA) or the Medical Board of Australia. 

• Seek a second opinion: If your diagnosis or treatment path is unclear, be open with your doctors about seeking another opinion, as it’s a normal and encouraged part of the decision-making process. 

• Don’t settle: If you’re not getting the health support you need, change your provider if possible. It’s essential to feel comfortable communicating openly with your provider and to be an active part of the decision-making process for your HS care. It’s okay to find a provider who will partner with you to meet your needs. 

The Australian Charter of Healthcare Rights outlines what you or someone you care for can expect when receiving health care. These rights apply to everyone receiving professional healthcare in all contexts in Australia. 

Share our HS resources with your healthcare team 

The members of your healthcare team want to provide the best care for your HS, but not all healthcare providers are familiar with the latest treatment approaches. By sharing trusted resources with your team, you can help ensure your care reflects the newest information and options.

When you have so many people in your team, you need to be organised. Keep a list of all your current medications and share it with all relevant team members. Know when your appointments are and have a list of questions or points to discuss before you go. There are many smartphone apps and online resources available to help you manage your day-to-day life more easily. 

If you find it too overwhelming to manage your team and appointments on your own, it is okay to get someone to help you. Close friends or family members may be willing to step into this role. Many larger health organisations have case managers who can advocate on your behalf. You could also find an independent patient advocate through some non-profit social organisations, patient organisations or online. 

Finally, your team can include many different people all working to help you live well with thyroid eye disease, but the most important member of your team is YOU. The more you know about your condition and utilise the people and resources around you, the easier your life will be.

Australian Commission on Safety and Quality in Health Care: Australian Charter of Healthcare Rights (second edition). Understanding My Healthcare Rights: A guide for consumers. https://www.safetyandquality.gov.au/sites/default/files/2020-12/11467_acsqhc_consumerguide_a4_web_fa01.pdf 

Medical Republic. Patient advocates: a private affair. 2017 March 10. https://www.medicalrepublic.com.au/patient-advocates-private-affair/878 

Patients Australia: https://www.patients.org.au