Throwback Thursday

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As we continue exploring treatment options, we decided to take some time to remind you of some posts that you may have missed.

Did you see this one? It is a video that explains what chemo is.

This one tells you how to prepare for treatment.

 

And this one gives you the key questions you should ask when you are getting treatment.

 

Let us know how you get on! We want to hear your stories.

TREATMENT: Preparing for It

For the rest of this  month, we’ll be looking at treatment: preparing for it, understanding it, living with it, coping with it. And today we’ll be looking at why it is so crucial to establish firm, positive and open relationships with your doctors – and how to go about doing this!


 

The WHY-YOU-NEED-HAVE’s of a POSITIVE, EFFECTIVE & OPEN DOCTOR/PATIENT  RELATIONSHIP:

 

  1. It will give you peace of mind and a stable platform of security
  2. Ditto for your family and supportive friends!
  3. Your right to receive ample time, care and attention from your doctors will be embraced, met and respected
  4. Being treated like an equal (and placed at the centre!) within your medical team will empower you!

And here are the HOW’s of setting up the very best relationship with your doctors: 

 

  1. Tell them how you, as a unique individual, are viewing your specific situation
  2. Explain the ways in which you are choosing to deal with your situation
  3. Make sure they understand how much information you want to be given
  4. Tell them how hard you want to fight your cancer and to what medical lengths are you prepared to go
  5. You have a right to choose not to have medical treatment — or to stop the treatment you are already having
  6. Explain how you are feeling about your situation. Terrified? Numb? Hopeful? Downright peeved?
  7. Tell the how you are coping – or not coping, for that matter!
  8. Ask your doctor to be tolerant of the healthcare choices YOU are making

 

TALK, TELL, ASK, DESCRIBE, EXPLAIN, GESTICULATE, DRAW, MAKE NOTES, EMAIL, PHONE!

Advocates for Breast Cancer - Patient-centred Treatment

 

So what if you’ve already found yourself stuck in a patient-doctor relationship that makes you feel even more vulnerable and downright uncomfortable than you need to be? One option would be to try and ‘start over’ with your doctor by sitting down with them and explaining all of the above to them. (TIP: jot down the points you want to make on a piece of paper to take with you to the doctor.) The second option is to stand on your right to be referred to a different doctor. You are entitled to go back to your GP and ask for a referral!

Finally – your aim is:
  • to get all the information you feel you need about your situation
  • to be given time (and allow yourself time!) to digest, understand and respond to it
  • make informed consent to treatment
  • prepare yourself for treatment
  • embark upon your treatment feeling fully confident that YOU have picked the very best course of action for YOU!

 

{ Inspired by the Cancer Lifeline Programme, Dr Rosy Daniel of Health Creation }

 

Advocates for Breast Cancer - Dr Rosy Daniel - Integrated Medicine

 

Building Teams of Care

The treatment of breast cancer is complex and should involve specialists from many different fields.

For the person with breast cancer it can feel like there is an endless string of doctors and health practitioners, each saying something different. The result is that a person with breast cancer can feel afraid and unsure about what exactly is happening with their body. The person who they know and trust the most – their family doctor – may not be part of the process which can add to the patient’s feelings of insecurity.

We are lobbying for a system of multidisciplinary care in South Africa which will bring all the different specialist care providers together and provide clear information to the person with breast cancer.

Multidisciplinary care is another way of saying: TEAM WORK!

http://www.quoteshunger.com/wp-content/uploads/2014/08/teamwork-quotes-9.jpg

The ‘gold standard’ for multidisciplinary care is a team that meets regularly and plans the treatment options and care for all patients within a tumour group. The care of each individual patient should be discussed by the team, and the family doctor needs to be part of the discussion wherever possible. The team also needs to include allied health and psychosocial health practitioners.

We do, however, need to be realistic. The ‘gold standard’ is something worth aiming for, but right now in South Africa just having different professionals talking to each other about their patients would be progress.

All core disciplines should have regular meetings to provide input to diagnostic, treatment, support and palliative care planning. There needs to be a clear communications path set up so that discussions and decisions can be shared with practitioners who are unable to attend a particular meeting.

Within this system, decisions, protocols and care pathways will be in line with the current best practice, and will include the latest research. In this way, multidisciplinary team meetings can also be seen as part of the ongoing professional development of each practitioner.

Collaborative links will be formed with the smaller referring centres. This creates a strong network of multidisciplinary teams and practitioners across and between integrated breast cancer services.

What do we expect the result of this system to be?

In an ideal world, the most important result will be that all people with breast cancer will have information about and access to relevant treatment and services. The way that the multidisciplinary team works and makes recommendations needs to be explained to the patent. There must be clear communication so that each person with breast cancer can feel connected to the planning of their own treatment.

In reality, we face the question of: WHO WILL PAY FOR THIS SERVICE? It will require creative thinking to get this funded. It may even require a rethink of how our funding model works in order to accommodate whole patient care.

In the meantime, we need to make sure that the teams that do exist in our State and Private hospitals are fully functioning as teams. This way of working must be taught in medical schools.

Newly diagnosed people with breast cancer need to know that they can be assertive and demanding about their treatment. When possible, they need to choose their team and insist that the surgeon and oncologist speak to each other and to the general practitioner. They also need to insist on seeing an oncologist before surgery as this may influence treatment decisions.

Do you have any suggestions about how these dreams could become reality? What is your experience of breast cancer treatment in South Africa?   

What does it mean to have access to breast health care?

wordle3 (1)As you follow this blog, one of the phrases that you will see mentioned quite often is ‘access to care’.

South Africa has one of the most liberal constitutions in the world. It is a document which was written in consultation with the people of South Africa. Chapter two of the Constitution includes the Bill of Rights. It states very clearly that Everyone has the right to have access to health care services”. We explained that right here. It also states that “The state must take reasonable legislative and other measures, within its available resources, to achieve the progressive realisation of each of these rights.”

In other words, all people living in South Africa have the right to equal access to breast health.

The words are inspiring, but the reality is less so. We may all have the right to equal access, but we do not all get it. If you read Boitumelo’s story on this blog (link to post) you will get an idea of the reality of the journey for many people with breast cancer.

So what do we mean when we talk about access to healthcare?

Access can be limited by financial, organisational and social or cultural barriers. In other words, it is not enough to supply a health service, it must also be affordable and acceptable to the people who would use it, and they must be able to physically get to the place where the service is offered.

Services available must be relevant and effective if the population is to ‘gain access to satisfactory health outcomes’. In other words, more cancer treatment facilities must be established so that the people who need treatment do not have to travel far from their homes.

We need to take other factors into account. Are people experiencing transport problems? Are they afraid of leaving their families? Are there other cultural issues to be understood?

In our communities we cannot say that there is equal access to services until service delivery is improved. Poor service delivery, such as not having the medication that is needed, puts people off going to state clinics. People with breast cancer are reluctant to leave home for weeks in order to attend specialist clinics, Poor maintenance of treatment facilities results in delays in treatment.

In other words, access to care is not just about whether a particular service is available. It includes whether the people who need the service are able to make use of it. Is transport available and affordable? Is the population educated about their options? Do people understand what steps to take if they find a breast lump or are experiencing pain?

We know that we cannot answer yes to any of those questions, and until we do we will not be able to say that there is equal access to breast health care in our country.

  • How do you think we can deal with the barriers that limit equal health care services ?
  • Tell us you story of how you battled to get to the services you need?
  • What would you like to change so that “the right to access to health care”, enshrined in our Constitution, will become a reality?

 

Please join in the conversation in the comments.

South Africa & Breast Cancer: Great Big Glaring Gaps

In our post, Reality Bites, about the reality of breast cancer in South Africa, we explained what the entire breast cancer basket of services is that one can expect – and has the right to receive. We need to, however, unpack this issue even more.

Specialist Breast Clinics are available in both the Public and Private sectors. Unsurprisingly and inequitably, there are more options in the Private sector.

Specialist Breast Clinics in South Africa

As per the map, Specialist Breast Clinics can be found in the following South African cities:

  • Pretoria
  • Johannesburg
  • Durban
  • East London
  • Port Elizabeth
  • Cape Town
  • Bloemfontein

In effect, this means that if you live in the Mpumalanga, Limpopo, Northern Cape, North-West that there is NO dedicated specialist breast health unit in your province!

This is NOT equal treatment or equitable access which are our basic rights according to the South African Constitution.

A standardised and sustainable Breast Health Policy can change this. 

South Africa & Breast Cancer: Reality Bites

D I D    Y O U   K  N O W  ? 

  • 15 % of the population use Private Sector Health: they are served straight away upon diagnosis.
  • 85% of the population use Public Sector Health have to wait…

 

Basket of Services - Breast Cancer in South Africa

Women in Private Sector care have access to the entire ‘basket’ of services:

  1. Surgery
  2. All forms of treatment
  3. Supportive care
  4. Breast reconstructive surgery
  5. Breast prostheses
  6. Lymphoedema service

This is, however, not always the case for the Public Heath Sector.

Saying that, even women in the Private Sector can miss out on receiving full cover from their medical aids for their actual cancer diagnosis and all associated treatments if they don’t carefully inform themselves by making sure to read the FINE PRINT of their policies! If they don’t thoroughly know the conditions of their medical aid policy, they will end up joining the treatment queue with their sisters in the Public Health Sector.

 


If 85% of our women are in the public sector how many of them are lucky enough to get the full ‘basket of services‘?

Breast Cancer - Basket of Services

Once again, it is our responsibility to equip and empower ourselves – as well as our sisters – with the knowledge necessary to make sure we have our rights met!

PHOTOVOICE: Braving The Storm

“I chose this photo because it shows my breast that isn’t there any more. This is my scare, but also my reminders that I conquered cancer.”

~ Margaret, 73 years old (Bonteheuwel, Cape Town)

poor quality follow up2

 


 

poor quality follow up poor quality follow up1

 

To submit your own story to People Living With Cancer‘s Photovoice Advocacy campaign, click here.

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