Boy shouting into a microphone

Patient advocacy is an area of specialization in health care concerned with advocacy for patients, survivors, and caregivers. The patient advocate may be an individual or an organization, often, though not always, concerned with one specific group of disorders. The terms patient advocate and patient advocacy can refer both to individual advocates providing services that organizations also provide, and to organizations whose functions extend to individual patients. Some patient advocates work for the institutions that are directly responsible for the patient’s care.”
Patient advocacy – Wikipedia

Many patients whether primary or secondary disease unknowingly advocate for our own healthcare.

There are groups out there who want and need people to advise in relation to services provided.  Many like MacMillan and other charities “use” advocates to help to improve these services.  And “use” is a term that I use with an open mind.  Some feel “used” as it can and has been in the past a tick box approach “we need a patient on the committee” sense.

Now patient advocacy is a huge part of improving these services.  Many patients, especially those with secondary disease that use these health services on a weekly or monthly basis are the people who are “experts” in their disease field.  They know about drugs, treatments, side effects etc etc because hospital becomes like a 2nd home.  I have often joked that about my own hospital.

But what you don’t also see if that many of these roles whether you are on a board, steering group or committee are voluntary.  Poorly supported in a financial sense.  Patients often only paid travel expences.  And I really feel that this is wrong.


I had an email the other week which progressed like

“I am told to contact you as you are a patient expert and you may be interested in this new remote blood sample monitor which is being tested”

I had experience of this a couple of years ago as I asked to meet Phillips who I saw at a conference and asked them about their remote testers as at the time I was travelling to The Christie and back twice every 3 weeks and the cost, time and effort was huge.  So a remote monitor sounded ideal.

Unfortunately, I didn’t get to meet them as it snowed, the train they were suppose to be travelling on was delayed and the meeting was never rescheduled.  So I knew what i wanted from blood testing as a secondary breast cancer patient who has had over 100 blood draws in the last 6 years.

So back to the email.  The person sending the email didn’t provide any details about expenses etc.  So I asked “are you paying travel expenses as I will have to travel a 46 mile round trip to get to the meeting and it will take another 2 hours out of my busy day in addition to the meeting time”

“oh i’ll have to check” so she came back a few days later and said that they could pay travel (great but why did I need to remind you?) oh and they will also now give me £50 voucher for my time.  Well that’s nice as normally I do get nothing, so date and time was set and she said it would all be sorted.

A week before the meeting she emailed again to say that she now had problems getting the travel expenses and would it be possible for me not to have travel expenses and I could just get the voucher.

Erm, no.

I sent an email back to explain that this is my time and there is a cost and actually it was quite rude that you now are not going to pay me expenses to get there when you said that would be done.  I have better things to spend my time doing without supporting your review of a product that will benefit a supplier that I will have reviewed but not been paid travel for and they make a profit from.. how does that work?

So I decided not to attend but specifically asked them to make sure that there would be a secondary cancer patient involved in the discussions as Im sure they would be the ones that would gain the most benefit from this whether its for standard treatment OR used for a clinical trial.

but somehow somewhere there will be a company making a profit on something that is being steered by patients in an unpaid role.

Patients loose their jobs, their careers, they are on benefits and sometimes unable to work due to ill health but they can still contribute.  Still why do we have to be “used and abused” and don’t get paid by the hour?  Im told that this is because it affects benefit but hey im sure there are lots of ways around this, vouchers or other ways but whatever it is, it needs to change as we are getting sick of working for free for our “expert” experience and time.

Things need to change.

Volunteering for METUPUK we are using our skills to make change not just for ourselves but for other patients and those who come after us.  We are actively focusing on objectives that will help to change the landscape of metastatic breast cancer.  And that is why as volunteers we have to try too.

Jo Taylor

Photo by Jason Rosewell on Unsplash