Fantastic group and thanks to those with insight to set it up!
I phoned my local Macmillan support service a week or so ago. I felt ready to bash some ideas around on how to tell my kids, and what support services might be available for them (they are 17 and 20). Problem is, in my local region, Macmillan is only available behind a wrapper provided by the Council, or so I believe.
Initial introductory 10 min chat OK and I setup a call this morning to progress. I thought I had a meeting with a Macmillan person. You hear so much about how helpful these guys are.
Dialled in to the video call. I had been given the wrong link and so the person I was trying to speak with was in a different waiting room to me. Sorted it out on the phone, but poor admin.
It ended up as a non-productive call. I explained what I wanted to talk about (again) and advisor suggested a name of a person who worked with children affected by cancer. Hmmmm my kids are 17 and 20, this is an adult conversation I need to have with them. "oh they do that too" I was assured. Really?!
Another name was mentioned. Starting to lose confidence in this conversation now.
I explained that I am taking ownership of my cancer and I am not a vulnerable person needing guidance, neither do I need support in managing my cancer. I have got things under control and it's frustrating when people try and manage my situation when they have not been asked to do so. Of course, everything I said about managing my situation was agreed with, that it was what I wanted etc. But hang on, I told you last week what I wanted and you aren't providing it in this call? Instead you are asking me how I am emotionally. Treat me like an adult and not a victim of cancer. How many people do I have to divulge my private medical information with, to reach support?
I thought I was meeting a Macmillan person so I feel a bit lied to. The Council wrapper service seem to be obstructive and denying support.
After the call there was two surveys to complete. A Macmillan one and a local NHS one. All negative feedback on both surveys. The Macmillan one is perhaps a tad unfair because I was denied the opportunity to speak with them so it's a bit strange they are asking for feedback. Doesn't sound like a good relationship locally between my Council and Macmillan.
The NHS survey just summed up how presumptuous the video conference "service" provided is. It asked leading questions all the way through, like "Do you now feel able to cope", "do you now feel able to have conversations with work". Err well, no I was perfectly capable before hand, and I just ended up asking the same question again, to someone new. I feel like you are not listening to me. You seem only interested in steering me down your pathway and telling me it's what I need or want and it's for my benefit.
Also part of the "service" is an online "my care plan" where people can add details of what they are anxious about and the Council wrapper service gets in touch to suggest people to talk too. I declined that for privacy reasons and I want to manage this myself. I'm 52, and perfectly capable of managing my health myself.
I will take some time to think about it.
I'll see what comes back from this conversation. I don't know whether I can trust this pathway or this organisation any more. Perhaps I'll try the numbers for Macmillan listed on here but I'm not sure I trust people in "support services" to treat me like an adult any more. This disease does not define me. I still have a brain and can take decisions on my future.
My Oncology appt was great. Partnership decisions with respectful info sharing and loads of detail info and Q&A.
Any other Region work like this? It must be funding thing. Really bad experience for me.
Thanks for the rant.
xXx
