Is it time for a BC pressure group?

Just wonder what others think.
I’ve recently been looking at the NICE website, and think it makes dismal reading - row after row of drugs are banned/ deemed not cost effective. Add to that the changes to DLA, and the fact that the Government still won’t tell commissioners to fund stereotactic radiotherapy treatment (despite their own experts concluding that it could save in the region of 3000 lives per year), I just wonder if cancer patients should be joining forces over this stuff - although I really don’t know what shape this could take (if at all). Maybe something similar to the AIDS campaign, where people got together on mass, and read out the names of those who had lost their lives. I know that sort of thing flies in the face of the “living with cancer message”, but maybe a change is due.
Opinions sought - and would you get involved?

Hi Lemongrove, I am certainly in favour of such a group. I would be happy to do things like lobby my MP and other fringe tasks. Not sure whatelse I can do cos depends on treatment obviously, but it’s a great idea and it would put pressure on government and PCTs.

Suzanne x

I’m amazed that the BC charities are not already lobbying through their Advocacy and Campaigns departments… Surely this is an important way to support those with BC!?!

In fact, if you look at the Campaigns thread here, it’s mostly about fundraising and not campaigning at all!

I`d be happy to join in any campaign,havent any particular skills to offer but would be happy to add to the numbers
Di.x

I would be very willing to be part of/develop/organise any lobby group. It does need coordination to maximise impact and show this gov’t that we will not just sit back and allow them to continue to ‘save money’ by cutting back cancer services/treatments. My treatment so far has been excellent and I cannot fault the NHS but I know that if my cancer does progress I may well be refused treatment on the basis of ‘cost’ - who can put a cost value on life anyhow? and decisions on treatment should be made by qualified professionals not goverment officials/ministers who have their own agenda.

I too would be more than happy to help in any way I can x
KQ

Count me in. No specific skills I’m afraid, but I’ve always been revolting

Another willing to help although again no specific skils but can shout!!!

I’m up for doing anything to help too x

count me in , I can be quite forcefulxx

I recently went along to a lobby group of all cancer charities to push for the issue of integrated care. It should be posted up somewhere on the site soon.

Hi girls, count me in, I,m revolting too!! Pam

I think this is so vitally important for us all and therefore would like to be part of such a group.
wintersocks.

I’m glad it’s not just me that feels like this. Does anyone have ideas about how this could be taken forward. Would it be worthwhile having a site that people could sign up to? What issues are of particular concern ?. How could it be publicised?
Don’t know about others but I’ve been feeling very worried about the way things have been going for quite a while now. I guess before I was diagnosed I thought that everyone / the powers that be, recognised that cancer patients were vulnerable and in need, but I now realise that was naive. My first introduction to the world of cancer care, came when I realised I would have to go to a London teaching Hospital just to get the most basic care (chemo/rads/routine scans), because none of this was available locally. Even when I transferred, I discovered that my PCT wouldn’t fund treatment that my Oncologist thought was the only option (and without the intervention of a Charity I would have died). Even when I had some progression, and my Oncologist wanted to prescribe Fulvestrant (Faslodex), I discovered that NICE had decided it is not “cost effective”, and shouldn’t be funded. Luckily for me my Oncologist ignored NICE, but many patients are not so lucky, and are having to resort to the emergency drugs fund. More recently it has been discovered that my receptors have changed and that I require Herceptin - and guess what ?, Yes you have guessed right, NICE are finding more and more ways to reduce those who are eligible for Herceptin. If you have secondary cancer that is both ER+ and Her 2, you cant have Herceptin and Endocrine Therapy. Add to that my worries about whether my DLA will be granted again when it runs out next year, I feel I’m having to fight just to stay alive.
Sorry if I’m going on, but this has been brewing for a while. Am I the only one who feels like they’re under attack?

Lemongrove, is there anyone within the BCC community we can contact to see if they’re currently raising awareness of this and if not if they’re willing to lead on it or help us in any way?

Hi ladies

I will pass this on to Leah and see if she can find out if anyone within BCC can assist.

Best wishes

Jo, Facilitator

Here in Wales, Macmillan recently did a bit of a press blitz to raise awareness of the financial impact of a cancer diagnosis. Since this all comes down to money, I wonder if it would be worth contacting them.

Hi girls,

Just to let you know that I am full on on this. There is a similar topic in the site, Despatches and Panorama, maybe we should link them together.
Angelfalls, I completely agree with you about the BC charities. I find their lack of social and political imput upsetting, enoying and harmful. Not to comment on the people that, sometimes, they use for sponsorships and the parties with celebrities they organised.

Here you have my ideas:
Online petitions
Facebook and twitter campaings
MP
Protest, Demostrations. I will go for something that really grabs attention like going topless or bold
Getting support from the Eropean Parlament or Comission.
Demanding more implication from the Cancer And BC Charities
Creating a Coallition of Cancer patientes
Media coverage: letters to the Guardian or the most influencial news pappers
Maybe you tube campeings
Shall we organised an e-mail list?

Hi everyone

I’ve got some info to post on behalf of the Breast Cancer Care policy team. It’s quite long, so here goes:

"Dora and Lizzie here from the Policy and Campaigns team, we are always keen to hear from people who want to campaign. We are a very small team and our focus at the moment is on two main campaigns Body Image and Spotlight on Secondary Breast Cancer.

"Our Body image campaign is in the early stages where we are carrying out some preliminary research and identifying key priorities. We have been campaigning on secondary breast cancer for a number of years and our current focus is on improving standards of care for everyone affected by secondary breast cancer; improving nursing provision and getting incidence data collected across the UK.

"As well as campaigning on these two areas we try to contribute to policy issues that are important to people with breast cancer. We do this in a number of ways such as responding to government consultation papers or adding our voice to larger groups such as the Cancer Campaigning Group, Wales Cancer Alliance and Scottish Cancer Coalition which include a wide range of charities who come together to campaign on a range of issues.

"Much of the early discussion in this thread was about benefits and benefits assessments and we are part of the Disability Benefits Consortium who currently have a survey to find out about people’s experiences with the benefits system. You can see this here Search Results | Breast Cancer Now.

"You also mentioned NICE , and we do frequently respond to their work. You may be interested to join their patient involvement programme, see more about this here Get involved | NICE

"Due to being such a small team we can’t respond to every issue so please do make use of the information you gather here and support from other members for things you feel strongly about. Being heard is important and the more people who speak up the more politicians hear, listen and act. The NHS and Governments have many competing priorities and it is all too easy for the needs of one patient group to be overlooked, or for politicians to think everything is alright because overall cancer treatments and support have improved – but we know this is not the case.

"To get involved with our work you can join our Breast Cancer Voices , being a Voice means you will hear about any opportunity to shape what we do and get involved with our campaigns. For example, recently a Breast Cancer Voice attended Westminster with us at a drop in event for MPs. She was the only patient representative in the room and the impact of her telling MPs about her experience was very powerful. You can find out more about joining Breast Cancer Voices here Breast Cancer Voices | Breast Cancer Now

_ Other ways to get your voice heard _

A face to face meeting with your local political representative can be a very powerful and simple way to tell them about the issue that is important to you. They will hold regular constituent surgeries, which you could book an appointment at. All political representatives will have a website with phone and email contact details, they will usually also list their twitter account if they have one.

You could also get involved with your Cancer Network. Cancer Networks bring together everyone involved in planning and delivering cancer services across local areas. They exist in England, Wales, Scotland and Northern Ireland to improve patient experience and to ensure care is integrated

Most cancer networks have a way of involving patients and listening to their views. People who are involved are often called patient or user representatives. Details will be available on becoming a representative on their website, or you can call or write to them to find out more.

Find your local Cancer Network in England by visiting http://www.ncat.nhs.uk/cancer-networks

In Scotland visit http://www.scotland.gov.uk/Topics/Health/health/cancer/links#a2

For North Wales http://www.wales.nhs.uk/sites3/page.cfm?orgid=456&pid=20355

For South Wales contact Home - NHS Wales

For Northern Ireland contact http://www.cancerni.net/

"We hope some of this information is helpful to you if you are keen to campaign either as part of Breast Cancer Voices or your own campaigns.

with best wishes,
Dora & Lizzie, BCC Campaigns team"