There is some fantastic work going on at the moment highlighting #WatchWaitWorry campaign (check out twitter) from Leukaemia Care but the UK CLL community could do so much more to widen understanding of impact of our disease. We need to raise awareness of the lack of resources, knowledge at GP level and individual patient stories to name but a few areas. One way we can do this is by retweeting and endorsing the work of #CLLSA. You can find them on twitter @CLLSupport. I feel like we are the cinderella of the leukaemia world so please join me and take action. Shocking statistics
Lets get our message out there UK CLL'ers - CLL Support
Via Twitter I understand that there are 5 key recommendations.. But someone is failing at the art of Twitter.. No easy way to access the 5 key recommendations..
Can you provide a URL for this?
If need is to communicate, then I'd hope to see 5 tweets, in order, 5, 4, 3, 2, 1, or 1, 2, 3, 4, 5.. Giving the recommendations as accessibly as possible (with minimum of effort, for readers on any device, to get the information.)
This is the report that was published 16/4 and contains the recommendations you refer to. You can find it on the Leukaemia Care website. Yes, admit not much good at twitter but I am trying. Happy to learn and follow your lead if you can get this started.
So agree! Encourage others you see at treatment, partners, carers, loved ones to join CLLSA. More members the more we can influence. Come time to the conferences, CLLSA is closely linked to clinical experts. It’s free to join, get involved. We are currently pulling together packs for members to take to clinic centres to help others find facts and friendship. Association is owned and run my members, Website to get others to see is: cllsupport.org.uk/home
Sadly I cannot be there in May as away but otherwise would and shall definitely be at the next one.
Do agree that the need to get the message out there needs to be a high priority but does it have to be only for smartphone users? Not everyone has or wants or can afford a smartphone. Use a full range of media please - to suit all ages and with a full range of media.
Thanks for taking the time to reply Yes agree. We should use multi-media channels but at the present time the reach into the CLL community seems to be so fragmented and therefore our collective experiences are hard to gather. I worry particularly about older isolated CLL'ers without family or social networks and I am sure there are many. Our experiences are all so different but there are commonalities. And we need to start somewhere. As I have said I have been encouraged by some of the recent developments including the APPG.
I take all your points on board and do agree that more isolated and older CLL'ers are particularly vulnerable. I suspect that leaflets and flyers that can be got to them are the best way to go for them - not sure of how we get them to the right people. Some UK hospitals do give out the relevant McMillan booklet on diagnosis - could we piggy-back on that by offering printed material as a companion? What is to be done about those that give nothing? Contact CLL/haematology/oncology in some way with the offer? In these days of cuts perhaps costs keep them from using such materials.
Agree. See Marc's post above. if we can get these packs that would be a big step forward but then we are still reliant on professionals to join up the chain.
Is there a similar resource elsewhere, such as the US, Canada or Australia? If not, how can we outside of the UK best get the word out about this resource?