This week the challenges of blood cancer patients accessing appropriate treatments information and care resources was raised in a cross party debate among MPs at Westminster. CLLSA have been working hard with other stakeholders and MPs to bring to the attention of government ministers unmet needs, recommendations and how recent changes to the NICE and CDF appraisal system to provide access requires more work to ensure fairer access for patients with blood cancers (rarer cancers).
Thanks for sharing: a good read. There appear some relevant skills and positive attitudes "in the House". At a time when our politicos are scrambling either to exit or remain (or pushed or falling to infamy or fame) it is refreshing to read them talking about our real lives in terms of care rather than as potential voters: supporting us rather than expecting us to support them.
I raised a smile when I read they were giving me a 40% chance of another three years (mind you I've had nearly one of those already!!). A bit rich really as they only started paying me my state pension this January! The ********s got me again!
This was very interesting, though I admit I didn't read to the very end. I was most surprised to hear them being so polite to each other!
It is good to know it is still being discussed, but would have liked a positive conclusion (and a précis of the content!) and something definite to come of it . Or did I miss that bit?
Hi chrisgranny have added a little more background below in the main thread , i think this is an important first step. Will keep you posted as we learn more of developments. look forward to catching up after the weekend.
Good to see they are taking all the campaigning by CLLSA and many other organisations seriously better late than never.
With the dramatic, and predictable drop in the pound post the recent vote, the very expensive medication many of us will need has just become 14% more expensive along with food and fuel. Clearly there is also a great risk to the research in centres of excellence in this country over the next few years and more. What ever they might try to put in place will be now be much more difficult.
It is positive that they are discussing this in the house - a shame these real issues faced by the NHS were only mentioned in headline claims, never realistic and all withdrawn since the vote. Can only hope that the majority affected by CLL and other cancer stay well enough to not need treatment for many years to come.
Hairbear - thanks for bringing this to us and many congratulation to CLLSA and Bloodwise and the other campaigners for getting this to Parliament.
Of course, leaving the EU will exclude us from research funds we have been part of and will disrupt research capacity in all areas. I just hope that we can make up the shortfall quickly, though I know this will be difficult in a shrinking economy.
A new All Party Parliamentary Group on Blood Cancer has now been formed, members of the new group brought this debate to parliament to raise the profile of challenges for the community and current state of play regarding access and provision of care for those with blood cancers. This is great news for now we have a parliamentary cross party group to represent us and fight for our needs. This is a first for blood cancr. If you have read the transcript of the debate you will have found that many of the groups members have a personal connection to a blood cancer and are very engaged with us.
The next step will be the first full meeting of the APPG in autumn this year. And patient groups and other stakeholders will be working with these MPs to make sure the voice and needs of blood cancer patients is heard. It was very exciting to see that so many MPs participated in Thursdays debate and share a willingness to understand more about the issues being faced by blood cancer patients a great opportunity for us. Although George Freeman's responses to the debate on behalf of the Government were quite general, this is a first step,a very encouraging start I think. Will keep you posted.
Well, a rainy morning so not out in the garden. I decided to read the Hansard write-up now.
First, congratulations to CLLSA and other pressure groups and individuals who have pushed to get this. I know debates like this do not happen without tons of hidden effort. Well done to all. I've watched a number of debates on BBC Parliament channel and boy, it is even harder reading them.
Nonetheless, I view this as a really important debate for us.
On a number of occasions the new All Party Group on Blood Cancer was mentioned. I was curious just how big that was and who is in it. Here is a link that documents the current members.
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