Despatches and Panorama

Anyone watched despatches on channel 4 tonight and then Panorama on BBc2
Same subject on 2 channels on the same night.
interesting to hear that only chemo administered via IV will qualify for disability benefit? Any other type of chemo or treatment and you are fit for work.
Conclusion appeal, apppeal, appeal.

Vercors, totally agree with you. Also when you include the appalling way cancer patients are being treated in other areas (e,g. life saving drugs banned by NICE, and people being refused funding for proven treatments) it’s staggering.
In my opinion it’s time cancer patients formed into a pressure group - governments wouldn’t dare mess with cancer patients then. Charities do lobby Governments, and frequently do a good job, but they cannot get involved in the sort of political pressure that is required.

nice one Lemongrove,we should march on downing street,im sure there would be enough of us to make a difference,we need an inspirational leader,any volunteers???

(decided to delete)

Hi
Thanks Vercors for posting this. I’m on holiday at the mo, so this programme passed me by but I’ll try to catch it on iplayer.
Hear, hear Lemongrove. Like the immunotherapy info I posted last week, yet another example of wrongly placed priorities. Who the hell did they consult? Cancer patients? Think not.
I’m no leader, but I work in PR. I’d be happy to chuck my skills into the pot.
It took some very determined and brave women to get herceptin approved and think how many lives are improved as a result.
Moondog x

Hi
I have had the pleasure of going to a ATOS medical and have had my ESA stopped from the 10th July,its very annoying that through no fault of my own I had to claim this benefit I work in a small company,had ssp for 28 weeks then esa.I have been having tests on my right arm as it is swollen and purple/blue turns out I have a blocked subclavacal vein from having a central line and blood clots.What makes me angry is how do they know how a person is recovering from chemo/radio and a operation in what is a short space of time,its all computer questions and they don’t write down anything you tell them.I cannot start work until next week as rotas had been done,now left with no money until then phoned and asked if I could get anything they said I could appeal or claim jobseekers allowance.Its a Bloody disgrace.x

I do seriously think it’s time that people with cancer formed a pressure group, and would be prepared to do the leg work (if others were interested in setting something up). However, I don’t have a clue how you would make everyone aware of it (don’t think BCC or Macmillan would be too happy about members using their site to mobilise a pressure group). Moondog, I guess you would know about this stuff, do you have any ideas?

Hi Lemongrove
I guess we could start by thinking about a Facebook site. I’m seeing my brother tonight who is a bit of an expert on social media, I’ll see what he thinks. Away from home at the moment, but happy to set something up on my return.
I’m also happy to do some research into what’s out there already. I know that there’s a Long Term Medical Conditions Alliance, but not sure off the top of my head whether cancer patients are represented.

Moondog, thank you. It will be very interesting to see what ideas you come up with. I have been involved in setting up a charity (UKCK), but I guess a pressure group is a bit different, because that is about rallying support. Just seems that cancer patients are being hit in so many ways at the moment, that something should be done. I have a mailing list of almost 1000 who signed a petition to demand funding for Cyberknife, so there are cancer patients out there who are unhappy with things?

Hi there.

I will be very interested in being part of the pressure group. I could maybe provide with a physical place to meet up. Also, maybe I could organize some events.

x

Hi
Happynipple (love the name) thanks for your interest.
I’m looking into the nuts and bolts of setting up a Facebook site - I wonder whether we should have two. One for planning for those who wish to play an active role and another for cascading information and inviting comment from those who are interested and willing to support us. There are various safeguards and privacy settings we could use for the planning site and Lemongrove’s list of 1000 contacts would be an excellent starting point for generating support.
I think we would need to be very certain of our aims and start off with a very specific goal which could be expanded in time. Is it government funding that we’re interested in or should we be putting pressure on big business? Should we focus on NICE and their criteria for approving (or refusing) drugs - how much emphasis is put on cost against survival and quality of life.
Just blurting out a few thoughts. What do you think?
Moondog x

Hi Moondog,

These are my main areas of concern:

  1. BC treatment statistic in UK needs to improve and reach European standards.
  2. Access to new drugs.
  3. Quicker and Faster Hospital referral system.
  4. Screening programs
  5. Cancer as a Disability and Access to benefits
  6. Long term side effects of treatments and the cancer team responsibility to treat them appropriately.

I think these areas are very important as I see a completely huge void in these areas. I think as a pressure group we could tackle those areas that aren’t being covered by other groups of charities. As you said, I think we should start with a particular goal we could use:

  • A Facebook page which will need to be updated
  • Twitting
  • You Tube
  • Letters to news papers
  • MP letters
  • Online petitions
  • Chats and Events maybe in public libraries
  • Act of protest, (I really fancy a topless demonstration)
    I am a big fan of using social network for social and political goals, but what I find a bit scary is the fast pace of the environment. I mean, online petitions and news seems to get outdated in matter of seconds but, anyway, they reach a huge number of people.
    Barking Happynipple
    x