*Post Edited see footnote at bottom of page*
Life is full of choices…granted some things like being diagnosed with Melanoma weren’t so much choice as having this monster thrust upon me & being advised that I must live with it forever. A marriage if you like that I didn’t ask for. There was no pleasant courtship, no wooing, no celebrating….just a life changing event, followed by a new “thing” in our world.
But, I have adapted. I allow for this newcomer. I acknowledge divorce isn’t an option so therefore this +1 needs to be accommodated. I do my bit, I try to learn and understand about it.
I work to help others too…so that they too can appreciate that the monster who is along for the ride like some free-loading parasite doesn’t have to take over completely. With a little negotiation over time, I stepped outside on sunny days without hyperventilating. With patience and a reluctant acceptance I can sleep through (most nights).
My comfort…my solace if you like, having been found through learning – knowledge – and through time spent with others – sharing & talking about how to live so that the Melanoma becomes the gooseberry in the relationship rather than the other way around.
And how has that knowledge been obtained?
Well obviously we start with the obvious Dr Google….although to be honest that just fanned the flames. My real understanding developed by attending high level medical conferences.
Conferences where the sessions were at times almost foreign in their content. Not only did I need to take 1000’s of photos of slides for further analysis. I took notes – pages & pages & pages of notes. And then….at these said conferences I would talk to other like minded individuals – some further into their adventure – and talking helped me to process that knowledge. So that what seemed impossibly scary, became understandable. I didn’t need a medical degree. I didn’t need translators or someone else to put layman’s terms subtitles under every medical slide.
I chose to be at these events – I wanted to learn. My knowledge & understanding can then be passed to others – who haven’t been able to attend for whatever reason, but who don’t want to be left in the dark, blindsided by jargon.
I was recently sent details of one such conference. In London so I wouldn’t need a travel grant or overnight trips from my family – it was doable.
I look on the website “War on cancer – a patients perspective”. That sounded like exactly the right conference for me. I am a patient & I have a relatively sound perspective of what it is like to be a patient. I also share what I see at all of these events online – which seems to be a requirement of attending these events as a patient. But application to attend isn’t that easy – I looked & couldn’t see the *Patient Advocate Application* area anywhere.
I run a Not for Profit entity – for the conference – & people who represent these were allowed to apply to attend. So I did. This is sadly, about where my patience ran thin…and the point where this blog post stops being saccharine.
I was called back by a representative (salesperson) for said conference who basically wanted to identify just how much money they could make from me & in turn what their commission cheque at the end of the month was going to look like.
I pointed out that I run a Not for Profit – but the not for profit funds aren’t there to be spent on my attending conferences. They are there to create a conference – fundamentally different. I also pointed out that I usually obtain a grant to attend such events – as it is deemed beneficial to all to have a certain number of patient advocates attend…you know…to tick the box that says we were included.
I happened to mention in passing that I was surprised at how few patients were actually talking at this event – given its name. I was then told that the fee to attend as a Not for Profit was £836.50 but that he would talk to his colleagues to see if there was something they could do about it.
A couple of hours later & I was sent a lovely email advising me that actually there were 8 people speaking who were either a patient themselves or directly related/connected to a patient. Also that his team were delighted to advise that a special discount of 50% would be available for me as a patient.
Firstly, let’s tackle that first part. 8 speakers who are patients or directly connected. Well frankly given the statistics of the world we currently live in every freaking person on that stage is “connected” to a cancer patient somehow – that does not make them capable of speaking for & as a patient. There are a couple of speakers at that event who really can speak for patients because they are one – and they are excellent advocates – but we really are talking token gesture’s again here.
So now we come to the money bit. The rate for a not for profit (on their website) is the same as for medical practitioner, government, public sector, academic etc – all of whom would get that fee reimbursed by their organisation. A Not for Profit would not. We would be robbing Peter to pay Paul. So obviously the Not for Profit couldn’t pay for it – but could I personally?
50% is still several hundred pounds. For most patients I know that is their mortgage….or half their family holiday. It is 1/3 of their monthly income. It is so much more than a discussion. To attend would mean taking something away from others in their family. It is penalising that patient once again for getting Cancer.
To say I find the idea of a conference about patients…supposedly “for patients”…and yet still closed doors to patients unless they attend under the banner of an organisation to be utterly and completely ludicrous. It is an insult.
This same week, through another advocate, I heard of another UK national organisation who were creating 4 committee groups for their conference. Only 2 of these groups had patient advocates or representatives on them. The reason supplied was knowledge – that the topic & memorandum of those committees was above the knowledge level of the patient population.
I can list dozens & dozens of patients whose knowledge level far exceeds any one of the people that even run some of these organisations.
I could if asked provide emails & names of multiple patients with Medical training that could sit on any board or committee and speak up for the voice of patients – both professionally and personally.
Patients are not stupid. We are not token gesture’s. The very reason I created the UK Melanoma Patient Conference was that it offended me so very deeply that patients were not able to be included, consulted, considered about their disease & its treatment.
Dear patient, we want to include you…but only if you sit quietly in that corner & don’t tell us what we are doing or saying is wrong. We know how you feel – a survey told us. We know what affects you…we see this on your charts.
The picture is wrong. The balance is wrong. Disappointed & really annoyed that this level of arrogance – this level of moneymaking & profiteering is still being permitted, encouraged & even condoned.
If every speaker on that panel said – I will only talk if X number of patients are actually included in the audience then the picture might gradually shift.
But they won’t – because whilst we are excluded it remains elitist – and us patients are mere mortals after all.
If I as a patient have been willing to learn about my cancer…ready to reluctantly accept change. Then perhaps the people & organisations at the other end of the scale need to be a little bit more willing to accept change too – or this balance is never going to shift.
*Following this blog post & email communication with the event organisers I have been offered a complimentary patient pass to this event. I am grateful that my feedback to them has been taken on-board & very much look forward to attending & sharing details of the talks with you.*