As many of you know I gained my Nursing Degree a few weeks before Rory was born! Single parenting, followed by a Breast Cancer diagnosis, followed by an unsuccessful return to nursing last year, means that I am currently in the ‘unemployed’ category.
I volunteer as a patient leader at my local cancer hospital, but just recently I have been thinking about the amount of unpaid labour I have been involved with. I have sat in board meetings with highly paid medical professionals and software developers. I have been asked to attend to give a much needed different and realistic patient perspective at these meetings. Every person around the table is paid, except for me.
No one else around the table has had cancer, but yet they are paid to make the decisions regarding the care given to people with cancer. I give examples of poor care. I assist in developing future care pathways. I stress the importance of knowing individuals and incorporating shared decision making from the very beginning of a cancer diagnosis. I have spoken about my unsatisfactory cancer experience at various conferences and health care events. And up until recently, I have been involved with the development of a new artificial intelligence tool which I strongly believe will transform the lives of cancer patients by empowering them with information at the touch of a button.
My involvement is incredibly emotionally draining, but I was passionate about the cause and ultimately the end results: Better Patient Care.
Do organisations take advantage of volunteers? Yes I think they do.
With financial cuts in most industries, people are having to take on the work load that would have previously been shared between two or three other employees. I see volunteers being asked to take on roles to free the workload from the paid employees. When did this become acceptable? When did this become ethical?
I carried on giving my time because I truly thought I could make a difference and influence much needed change. I thought I was a valued member of a team that would be pivotal in transforming cancer care services, especially for single parents and the younger person going through cancer. But I was wrong.
It really worries me that in today’s employment society, people are being replaced by robots. How on earth are people supposed to get back into work. Paid labour is being replaced by volunteers. Fantastic volunteers. Volunteers who devote their time, energy and emotional wellbeing for the good of others. But with so much unemployment in our country, which is only going to get worse, should we be paying our volunteers?
How different might it be, that instead of introducing myself as a patient leader, I called myself an “unemployed single mum doing everything for free whilst everyone else gets paid”?
I understand that there are thousands of retired volunteers who make such a difference to today’s society, but there are also so many volunteers that undertake tasks that they should be paid for.
I don’t know what the answer is. But what I do know is that after all of the blood, sweat and tears I have invested in my volunteering role, I asked for one small thing that was important to me. Something that would include me as a valued member of the volunteering team. Something that would not have affected anyone else but it would have made a huge difference to me. Not only was it denied, it was denied with bullshit and lies! I do not tolerate that.
I have seen how a hospital makes its decisions. I have witnessed behind the scenes day to day operations. The only people who know what it is actually like to have cancer are the patients themselves. There is not one patient, former patient, or patient advocate on any of the boards. I have been questioned as to why I was even present at a meeting! The wrong decisions are being made continually.
I am a strong, independent, nurse trained, unemployed, single parent, former cancer patient with a wealth of knowledge and expertise. One way or another, I will find a way to make positive changes for people and their families living through cancer. In a paid capacity. Because the people who are paid to do it at the moment, are failing and it is just not good enough.