Before anyone can see a specialist, a referral is required from a GP to that specialist. Referrals only last 1 year and then another appointment with the GP is needed to for a new referral.
For most patients the first sign that something is wrong is that they feel unwell and visit their General Practitioner (GP) for a check-up. From here the GP may send or refer you for further tests and a referral is simply a request for additional tests or a request for you to see a specialist doctor for an opinion.
The GP can generally not diagnose lymphoma but they may or may not suspect it but the tests that they order will help with the diagnosis. The GP may refer a patient to a haematologist for further investigation. The GP can recommend a haematologist, or patients can also request to see a haematologist of their choice.
How long is the wait to see a haematologist?
Waiting time depends on how urgent the need is. In some cases, the GP will have ordered blood tests and possibly CT scans and a biopsy. They will write a letter of referral to a haematologist and this may be a haematologist at the nearest hospital. However, not all hospitals have haematologists or the access to the scans that are needed and some patients may need to travel to a different area.
Some patients may be quite unwell and need to be admitted to hospital. In these cases, they may be taken to the emergency department and a haematologist will be assigned to care for them.
Seeking a second opinion
Any patient can ask for a second opinion from another specialist and this may be a valuable part of your decision-making process. Your haematologist or your GP can refer you to another specialist. Some patients may feel uncomfortable asking for a second opinion, but haematologists are used to this request. Make sure any scans, biopsies, or blood test results are sent to the doctor providing the second opinion.
Public or Private Health Care?
It is important to understand your health care options when you’re faced with a lymphoma or CLL diagnosis. If you have private health insurance, you may need to consider whether you want to see a specialist in the private system or the public system. When your GP is sending through a referral, discuss this with them. If you do not have private health insurance, make sure to let your GP know this too, as some may automatically send you to the private system if they don’t know you would prefer the public system. This can result in being charged to see your specialist.
Many haematologists that work in private practice, also work in hospitals so you can request to see them in the public system if you wish. You can also always change your mind and switch back to either private or public if you change your mind.
Health Care in the Public System
Benefits of the Public System
- The public system covers the cost of PBS listed lymphoma treatments and investigations for
lymphoma such as PET scans and biopsy’s.
- The public system also covers the cost of some medications that aren’t listed under the PBS
like dacarbazine, which is a chemotherapy medication that is commonly used in the
treatment of Hodgkin’s lymphoma.
- The only out of pocket costs for treatment in the public system are usually for outpatient
scripts for medications that you take orally at home. This is normally very minimal and is
even subsidised further if you have a health care or pension card.
- A lot of public hospitals have a team of specialists, nurses and allied health staff, called the
MDT team looking after your care.
- A lot of large tertiary hospitals can provide treatment options that aren’t available in the
private system. For example certain types of transplants, CAR T-cell therapy.
Downsides of the public system
- You may not always see your specialist when you have appointments. Most public hospitals are training or tertiary centres. This means you may see a registrar or advanced trainee registrars who in clinic, who will then report back to your specialist.
- There are strict rules around co-pay or off label access to medications that aren’t available on the PBS. This is dependent on your state health care system and may be different between states. As a result, some medications may not be available to you. You will still be able to get the standard, approved treatments for your disease though.
- You may not have direct access to your haematologist but may need to contact a specialist nurse or receptionist.
Health Care in the Private System
Benefits of the private system
- You will always see the same haematologist as there no trainee doctors in private rooms.
- There are no rules around co-pay or off label access to medications. This can be particularly helpful if you have multiple relapsed disease or a lymphoma subtype that doesn’t have a lot of treatment options. However, can get quite expensive with significant out-of-pocket expenses you will need to pay.
- Certain tests or work up tests can be done very quickly in private hospitals.
Downside of private hospitals
- A lot of health care funds don’t cover the cost of all the tests and/ or treatment. This is based on your individual health fund, and it is always best to check. You will also incur a yearly admission fee.
- Not all specialists bulk bill and can charge above the cap. This means there can be out of pocket costs to see your doctor.
- If you require admission during your treatment, the nursing ratios are a lot higher in private in hospitals. This means that a nurse in a private hospital generally has a lot more patients to look after than in a public hospital.
- Your haematologist it not always on site at the hospital, they tend to visit for short periods once a day. This can mean if you become unwell or need a doctor urgently, it isn’t your usual specialist.
At your appointment
A diagnosis of lymphoma can be a very stressful and upsetting time. It may be difficult to remember all the details and some questions are overlooked so it may be helpful to write them down for the next visit
It may also be helpful to take notes at the appointment and taking a family member or a friend to the appointment can be extremely helpful. They can provide emotional support and take in information that you may miss. If there is something you do not understand you can ask the doctor to explain it again. They will not be offended, it is important to them that you understand what they have told you.
You may also like to download our Questions to ask your Doctor as a guide.