Brain Care Coordinators

Here in Canberra the Brain Tumour Alliance Australia is campaigning to the ACT Government and Federal Government for funding to support a network of specialist brain tumour care coordinators, similar to the Breast-care nurses. The results of a survey on the issue showed wide support.

As part of the campaign, I have provided a patient perspective...

Prior to and after diagnosis i lost the ability to cope with multiple things at one time. I had very poor memory, and was absent minded and confused and had severe headaches yet all at once i had to face major brain surgery within days and a sea of organising appointments with specialists, oncologists, radiation oncologists, neurosurgeons, physio, registrars...the list goes on. When all I wanted to do was hold on to my two boys and never let go.

I was told I had as few as 3 months to live and the last thing i wanted to be spending my precious remaining time on was navigating the bewildering maze of treatments and health bureaucracy.

It is devastating news for anyone to be diagnosed with a terminal illness, but for brain tumour patients like me, the symptoms of my tumour made this time even more overwhelming and confusing.

I have a young family and it is not just the medical side of things, but there are also practical things that had to be managed – schooling, bills to be paid, taking leave from work, household to run, visitors to look after. These needs don't go away when you get sick but I had absolutely no mental or physical capacity to manage all these things at once.

I cannot stress enough how much easier our journey would have been with the help of a specialised care coordinator who understood the unique circumstances and needs of me as a brain tumour patient.

From the day you are diagnosed you have a million things to think about, and a million questions you may not even have thought to ask yet. I wish we had had someone with a steady hand to guide us through the storm.

From the day you are diagnosed you have a million things to think about, and a million questions you may not even have thought to ask yet. I wish we had had someone with a steady hand to guide us through the storm.

A specialised coordinator would also be able to talk about 2nd opinions, which is obviously an area the specialists wouldn't provide information on. In my case myself and my husband were still reeling from the diagnosis and first surgery to even think about pursuing other treatment options so my sister who is a nurse researched the options and arranged a second opinion with a neurosurgeon in Sydney which led to a second surgery 3 weeks after the first which ultimately saved my life.

This person would be accessible in a way specialists aren't and shouldn't have to be to answer minor questions or questions I was too embarrassed or forgot to ask.

There are new questions every single day but we had no way of getting information outside of the fixed specialist appointments. Because of my memory problems I would often forget what the doctors had told me. My GP doesn't have the specialist knowledge of brain tumour treatment and my family resorted to researching things themselves on the internet.

In the absence of someone like a care coordinator we stumbled through and I literally had 3 people full time helping me to manage – after an initial period my husband had to return to work full-time, my parents put their life on hold and moved in with us for pretty much a year. My mum held the house together and tried as best she could to keep a steady routine for the kids, my step dad kept track of all my appointments, drove me to and from the hospital and managed my many medications and supplements. This area in particular I could have made potentially deadly mistakes if i had to do this myself after being discharged. It is hard to describe to you how confused i was.

The symptoms of the tumour itself and its treatment meant i was completely unable to manage these things myself. At least with most other cancers, you still have your faculties about you, i was effectively mentally disabled by my tumour in a way i don't think other cancer sufferers are. Again, a care coordinator would have made things so much easier for my family.

In my case no-one at any stage warned me or my family of the serious but less common side effects of my medication, particularly the steroids. We were told they were essential but not warned what collateral damage they could do. One of the side effects is depression and for me the drugs triggered a deep depressive episode which almost shattered our lives. For my family, having someone at the very beginning after diagnosis to advise them to be vigilant for possible symptoms of all the various treatments, including the early signs of depression, could have helped them detect signs before they became so serious.

I was and am incredibly lucky to have such a supportive family. I honestly don't know how i would've managed without them. Even with their support and practical help, it was really, really tough. I have no doubt i would not be sitting here so well today without them, but as Maryanne said it takes a terrible toll on carers.

It is a condition that requires long-term treatment after leaving the hospital – removing a brain tumour can save a life, but their physical and mental impacts remain. I am lucky enough to be 3 years on, but i still see suffer memory impairment and can't cope with complexity. I still see my oncology psychiatrist every 6 weeks and see my neurosurgeon for ongoing scans and tests. For me being able to maintain a long-term relationship with a dedicated care coordinator would have been very reassuring.

Most patients aren't in a position where their family members can drop everything to help them to cope. I have heard from a woman who is a single mother of 3 teenage children, she has the same diagnosis and is suffering the same deficits was as me but doesn't have a strong support network. Where does she turn to when all she wants to do is be with her kids?

This is a devastating disease with a devastating prognosis. Supporting a specialised position like this would help free patients up to spend precious time in the arms of their family.