Category Archives: Advocacy
Just a quicky post to ask any UK CRPS peeps to take a look at the link below (you’ll need Windows Media Player I think but try it anyway).
Yesterday an online acquaintance who some of you may know, Kev, managed to get his words heard in parliament thanks to his MP Ian Stewart. This was a really positive moment for UK CRPS patients as it has highlighted the need for more funding into research and diagnosis. I really would recommend you watching it for yourselves as I don’t feel I will do it justice, however I will come back to this post and bulletpoint a few pertinent points made once I’ve re-watched it with a notepad. The CRPS subject comes up at about 2hrs 19 minutes into the video. Please share!
So last time I updated you, I was talking about the big A, acceptance. That’s still something I am monitoring, as you know I have mixed feelings on it. I do think acceptance is bandied around a bit as an excuse not to bother trying by doctors who don’t or don’t want to understand CRPS and chronic pain in general. Scary when it’s your pain clinic consultant! That said, I’ve had to broach my CRPS in various circumstances recently and on reflection I do think acceptance is something I can hack, well a bit.
One example is my eye test this week – I lost my glasses a while ago and at my last test had been told I “MUST WEAR THEM AT ALL TIMES!!!”, so avoiding the situation wasn’t an option. Part of the eye test involves the optician asking about current medications and health concerns, and I couldn’t really get around this without having to mention the opiates and CRPS. On sharing this, with a cringe, I got the overt sympathy response from the optician. “Oh you poor thing, I could never cope with that, it must have ruined your life”. I don’t know whether it’s my aversion to any kind of pity or being a Brit, but my usual go to response of a bit of self-deprecating humour came out. I don’t want to be a “big deal”, I don’t want CRPS to be getting all the attention when I have gorgeous big brown eyes that need checking out. I played it down, “It’s no biggy, everyone’s got problems and at least mine get me the good stuff!” Is this another step in acceptance? Possibly. I do think I am becoming obsessed with that word now and not in a good way. *spits*
Now ACKNOWLEDGEMENT is an issue I can sink my teeth into. That’s empowering, but can be the polar opposite of my stiff upper lip when I focus on why others aren’t acknowledging my pain, symptoms, story, right to be listened to. I think this was a greater issue that came out of that recent pain clinic appointment. I wasn’t acknowledged. Noone wants a fuss made over them (although it’s my birthday today, so you can go for it this once lol), but how do we balance avoiding the pity trip (whether from ourselves or others) with enough acknowledgement of our issues and what is important to us? Too few doctors acknowledge CRPS as an illness, I’ve already met a couple in person who see it as “just a label”, and I’ve met more who think life is better without a diagnosis or label at all. Perhaps that’s the case, but how does our pain get acknowledged for services such as benefits without that? We get seen as moaners, people who “just have a bit of a bad back”, that kind of thing. We need that acknowledgement to open doors that help us through in life. It’s a fine line, I know, but it can make all the difference. It’s all very well saying we don’t need a diagnosis psychologically, but people are different, what they need is individual, and socially/support-wise many of us do really need a label just to get the help we need.
The last A is advocacy – who has our back? Not the government at the moment, who are stripping the weakest in society of their benefits. Some of us have great doctors who are tuned into what they need, and others of us feel left out to dry. I’ve been struggling with my pain clinic this month. As some of you will have read, my consultant got me out of the door by promising me a place on a pain management programme “within a month”. This consultant runs the PMP, and is well aware of any waiting lists. I was stunned and my husband was cynical of the promise but got direct answers that left no uncertainty – I would have a letter within a fortnight, and a place to start within a month. Nothing there to be misunderstood. When I didn’t receive a letter, I rang the secretary – and I might be paranoid in pointing out at this point that she has told me previously that she has called ID on her phone. Four calls over a week were answered by another doctor’s secretary who shares the office but not the phone line. Each time I was promised a call back within the day, not one time did I get one. I caved and rang back, to be scoffed at by my doctor’s secretary and told it will be “months and months” before I even heard about the PMP, never mind get a place. When I explained what had happened in the appointment I was told I must be mistaken, but she would speak with my consultant and ring me straight back. Did I get a call back? Did I heck as like. Another call for help regarding severe new symptoms and possible rapid spread of the CRPS has also been ignored despite the other secretary passing the message on that in her view I needed urgent help. Still waiting, a week on. On a side note, my consultant’s secretary is not the only one with caller ID and I have not missed any calls, never mind one from her office. So advocacy is not something I have there.
I have however used the Patient Advice and Liaison Service (PALS) in the past and intend to do so again on Monday. I also finally have the acknowledgement of my GP now my diagnosis is in writing and he is finally working with me in getting things sorted. This has involved the GP going over the pain clinic’s head by referring me directly to the Spinal Chord Stimulator neurosurgeon that the pain clinic refused to do. It may well also involve a referral to a new pain clinic as I believe the relationship with my current one has irrevocably broken down due to their continuing lack of communication, acknowledgement and support.
Another part of the advocacy issue is that I have received a response from the Secretary of State for Care and Support to my letter to my MP. I will get it scanned and uploaded at some point when I work out how best to do that. Check out previous posts on how you can get the government to listen to us. The Rise Above Pain blog will be moving to a new level in advocacy for CRPS and chronic pain sufferers, I intend to get the ball rolling with a support network and advice packages, and also get some education on CRPS out there to those who can genuinely make a difference.
So that’s where we’re at. I’m going to keep pushing for support while not giving in to self pity, which is something I really cannot stand in myself. CRPS can take my nerves but it can not take my often ridiculous sense of humour or determination not to “give up”. If there are people like me in the UK who want to get this moving forward, please pipe up!