Is it time for a BC pressure group?

http://www.cancercampaigninggroup.org.uk/

Have a look to this, maybe we can use it.

Happynipple - you posted at the same time as I did - wasn’t intending to gatecrash your thread, just to let you know some of the things BCC is doing and some ideas of ways to influence what’s happening.

Hi Again,

It seems that there is a general dissatisfaction about BC charities and how they represent and stand by BC sufferes. Personally, although I appreciate the BCC reply, it doesn’t clarify to me some of the questions rise in this thread.

Thanks Leah. Hope this result in a more fructiferous support

Thank you Leah for explaining the work of BCC, and offering some suggestions for how people can influence policy.
I think most people recognise that BCC do a very good job campaigning to improve standards of care. However, Charities such as BCC who are registered with the Charity Commission are limited in the type of political campaign they can be involved in. Charities can campaign to improve services, and can offer recommendations during consultation exercises, but they cannot overtly criticise Government policy, campaign against, try to change, or challenge Government policy. Also as BCC acknowledge, their campaign team is small.
I agree that people can speak to their MP’s, but one or two people are unlikely to have any clout. I also agree that people can join patients representation groups, such as the NICE patient involvement programme and the NHS Cancer Networks, and it is true this involvement can help to improve service (I’ve been involved with both so I know that is so). However, the problem is these Organisations are heavily circumscribed, in terms of the issues they address. Both NICE and the NHS have a remit, and it is not to challenge Govt policy.
My personal opinion is that it is time cancer patients started kicking up a stink, but I doubt that Cancer Charities are a vehicle for that.

Have you heard of 38 Degrees? <cite><a href=“http://www.38degrees.org.uk/” target=“_blank”>www.<b>38degrees</b>.org.uk/</a></cite> They take on a lot of issues and might be interested. Issues are decided by their members.Their methods are mainly lobbying and petitions, but they are very good at co-ordinating support. The NHS is one of their critical campaign areas. I agree that charities by definition are not really about campaigning for things that are effectively political in nature.
Lemongrove your comment about ER+and Her2+ secondary bc sufferers not being able to get Herceptim and endocrine therapy shocked me. I don’t have secondaries as such but had a regional recurrence that my onc said was classed as secondary cancer and it was ER and Her2+ and i did get both. Perhaps i was lucky - or is this a recent change? If this isn’t the case for people with mets then I think that is dreadful.

Moser, I believe NICE issued the decision in June this year. Try not to worry though, because if patients are already taking endocrine therapy with Herceptin, I think the guidelines say they should continue.
Yes I have heard of 38 degrees, and joined their campaign against the recent health reforms (in fact I handed their petition into my local MP). I agree they are very good, and they were certainly very successful pressurising various companies involved in the Olympics to agree not to use tax loopholes. Personally though, I think petitions aren’t enough. I feel that cancer patients should be getting together and kicking up a stink. My son (who is a bit of a geek), tells me that what I should do is create a website and then get everyone talking about it on Twitter (apparently the more people who talk about it, the more exposure it gets). He started talking about using hashtags, and keywords, but I switched off at that point. Trouble is I don’t want to start something on my own, because that could look a bit cranky.

Hi Lemongrove,

I totally agree that this shouldn’t be just one off thing and, just petitions or MPs aren’t enough. I believe we should constitute ourselves as an organizations or something similar, because this is not just an isolated issue.

I think that a website is an excellent idea because, it will allow to keep the information more permanently than the online petitions. Also it would give a more comprehensible vision of the issue/s, the only problem is that a website is very complex to make and, to have one that is operative and professional is quite expensive. I’ve had to design one myself as part of my Masters but, I cannot possible undertake to build one myself.

I think facebook, twitter and youtube are very powerful tools but, they need to be kept updated often, otherwise, with the fat pace of the online environments, it gets irrelevant or a thing of the past. I’ve been supporting some online campaigns and, its really frustrating to see how easy is to lost the initial energy.

I am quite into posting videos in youtube, I’ve never done it but they are quite effective to create interest and draw attention.

Let me know what you think.

Hi
I’m in.
I think Facebook would be a good place to start even if we don’t have much to say at the moment. It would be a good way of assessing how much support we have and communicating to everyone at the same time. I think if we make it clear that we are starting out and won’t be posting often, that’s OK. We can also give links to key pieces of news which will keep the site looking dynamic. Maybe the website could follow in time when we have the expertise to set it up. I think we need two sites, one for those who wish to be actively involved and another for supporters.
It may also be useful to start a register of skills of all those who express an interest in jopining the group, we may have a web designer lurking in our midst! It would be good also to collect information about which Local Health area people are in so that we can co-ordinate local pressure on a national level, getting the biggest hit possible.
I think we have two main areas of interest, the benefits system and NICE decisions (or lack of them) and other associated issues thst Lemongrove has detailed above. Maybe one way of getting support and keeping things dynamic is to put issues to the vote. It makes the whole process very inclusive and peope are more likely to particiapte if they feel they have played a psrt in shaping it.
Lemongrove, have you had much interest from the MacMillan forum? I think there’s also an active Marsden group and a BRCA group too that we could approach.
HappyNipple, I’ll take a look at your link to the campaining site today, in between cheering on Team GB. Maybe we should be Team BC.
Moondog x

Hope I havent misses the boat here but want to throw my hat in. Am newly dx so I don’t have experience of your frustrations but what I am learning is that the standards of care vary wildly across the country. I don’t actually have any complaints about my treatment thus far, but I’ve only just started this journey.

Something Lemongrove said hit a chord, about the living with cancer message. i don’t see that living with it and kicking up a stink to get oursleves heard are mutually exclusive. I don’t see that we have to be passengers, meekly accepting that the politicians have our backs.

A facebook page is a great place to start but your son, Lemongrove is correct. We need an online presence, chatter on lots of sites that link back to facebook.,… thus elevating our visibility online. I run jaguar.com, or at least did and I’m no geek but can help. Or at least tap up people for knowledge. I’m no web designer or programmer but I would be an extra pair of hands.

So, as you’ve mentioned,. where on earth do you start? Where does everybody live? I’m slap bang in the middle of the country in the West Midlands but have a car and can travel.

im east mids,derbyshire,can travel too,dont have any specialities but willing to add my voice.x
Di.x

Well I’m game if others are. Don’t think BCC will allow their forum to be used to establish a pressure group so maybe we should pm each other and share Email addresses. Maybe then we could then come up with some ideas about what we should push for, how we should do it, and how we tell others of our existence. Personally, I don’t have a clue how we would contact others, but I do have quite a large mailing list of people who have signed my Cyberknife petition, so maybe we could ask them to pass the message. Also, with the social networking sites, am I right in thinking that the more people who visit the more coverage you get?
Maybe peeps can ask others to express their interest here.

Count me in, see my thoughts above! I’ll send you my email address x

I’ll also spread the news… X