I’m interested in finding out how others have experienced support in the community. Hopefully our combined experience can improve that care and support.
I was diagnosed with non-secreting multiple myeloma two years ago. I have struggled to receive support in the community. Either the services I approach do an assessment and then fail to follow up the outcome or I receive piecemeal help and then my case is closed or I’m referred on to another service and have to go through the whole assessment process all over again. There is little continuity of support or joint working among services it seems.
I once worked as a substance misuse worker in the 2000’s. I worked for statutory (NHS) and non-statutory (charities/private) services. My job was to support drug users through all the stages of their recovery, to follow up referrals I made to other services and to uphold any safe guarding concerns. That way of working seems to have vanished in my experience.
Enough of me waffling on. What has your experience of community support been like?
Hello there @Spectralis, welcome you to the forum. I’m really sorry to read of your diagnosis with multiple myeloma but am very glad you’re here to share your musings and experiences of seeking community.
Although I have a different blood cancer to you, Polycythaemia vera (PV), and don’t feel qualified to speak about current UK healthcare joined-upness, I’d say this forum has become my favourite community for finding likeminded people despite it being online.
I think, as blood cancers are relatively rare and the more obscure types we can have make them rarer still, a place like this forum is the easiest way to find community. Others who live with the same or similar set of symptoms, treatments, side effects and general lived experiences of blood cancers are all to be found here, supporting one another and sharing personal tips and so on.
Another more in-person way to find community for me has been attending blood cancer conferences where we can meet others living with the same rare disorders. It’s been very emotive and weirdly comforting to meet others going through what I am.
What sorts of community have you experienced, may I ask? Perhaps you’ve attended the MPN Voice patient forums going on around the UK?