Finding a voice:user involvement in Breast Cancer Care
Finding a voice:user involvement in Breast Cancer Care Breast Cancer Care has recently launched a report called “Finding a Voice based on service user involvement.
You can download a copy of the publication from here: breastcancercare.org.uk
/content.php?page_id=5297
This report gives practical examples of the way our work is shaped by the experiences of people affected by breast cancer.
It is vital that we continue to listen to our service users to find out how we can improve our services and how we can add to the work we do.
As ever, we would welcome any comments and suggestions you may have, both on the report and our services. Please feel free to add to this thread anything that you may feel is relevant.
Amazed I am amazed that you are asking this question.
Users of this site recently completed a questionaire; we have received no feedback on the findings.
People have asked time and time again for contact buttons, once again, NO RESPONSE.
If you are NOT prepared to acknowledge the ideas the users put forward, there is no point in asking questions.
Maybe this is why this topic has had no replies in over 2 days, people are fed-up with the total lack of consideration afforded to the users.
Ditto Amazed. I was also quite surprised to see this posting.
Thanks to the old forum’s contact button facility I’ve been able to meet and keep in touch with others in the same cancer boat as myself.
These forums are a fantastic facility but private emails (away from the world wide web where anyone can read your postings) can be a lifeline.
What’s happening with the contact buttons BCC?
It would be nice to be put in the picture.
I recently met up with a member from the ‘other site’. We got on like a house on fire. This meeting would never have taken place without the private messaging facilities on there. Why can’t you have the same on here? Both sites are valid, but I think there are many more people posting on the other one now. This must beg the question WHY?!
And as for swearing … We’re allowed to swear, we’ve had b****y breast cancer!
Mcgle
PS I am also in private contact with two ladies from the HER2 Support Site. Their contributions have been invaluable, and ‘talking’ to people with some understanding of my situation has really helped.
Please listen to what is being said by so many.
Mcgle
Ditto Agree with other postings - contact buttons please. I too am in contact with people with similar cirumstances to mine (contacts made before buttons removed) - this is a life line
life lines. I’m still visiting these forums because I want to reach out to others, especially if like me they have secondaries. I was diagnosed at stage 4. But there comes a time when you stop writing quite so much about treatments and hospitals and you want to share with others the impact bc is having on your mind, your family, your life instead. The world wide web is too public a place, in my opinion, for this. This is where the contact buttons were such a help in the past. Lots of us from the Secondaries forum formed our own group and I understand the ‘other’ site is hugely popular. (probably more so than these forums!)
If the contact buttons are never going to be re-introduced I think we should be told.
Patronising I wish to add my voice in support of the comments made above. I too have had the opportunity of meeting, through this forum as it was originally managed, initially by e-mail and later in person, a woman who has become a good friend - and subsequently through her another forum member whom the first friend had herself met in the same way. I like to think this has benefited all of us.
The corporate silence here on the issue of contact buttons is simultaneously aloof and patronising. I am at a complete loss to comprehend the issue of “safety” which was cited at the time the facility was withdrawn.
I now far prefer the other forum which is a friendlier environment - and the third-party personal messaging postbox system is completely safe.
Have to echo… all the above.
I met a young girl today whose life has been completely shattered by a mets dx, so much so she cannot see further than that dx. I can remember that feeling so well and the horrid isolation when you realise there really isnt anyone who understands how you feel. I was lucky enough to be invited to an off board group just before the contact buttons were withdrawn and i can honestly say that without the advice and support of these valuable individuals i would not be in such good shape today - mentally as well as physically.
Groups/forums such as these play such a vital role in helping people come to terms with living with this cr***y disease
There is so little face to face support out there, really there is very little, and there should be a facility where people have the choice to contact another individual in the same boat especially if they feel they can offer assistance in some way. The comfort and supprt this facilty brings must surely outweigh the risks of those who would abuse it, and anyone who does abuse it shouldnt be here in the first place.
I dont think anyone objects to new initiatives its just that people have been asked for input, which they duly do and yet never appear to recieve feedback.
I was also surprised to see your post BCC.
So much so i just ignored it at first, as you just seem to ask the same old question and then no feedback, and no action on what are obviously widespread/consensual opinions of the forum members. (i.e. contact buttions - the usual crying out for them, widespread across the forums, but ignored. Its not rocket science - i am a member of several types of forum and they all cope.)
Why ask the same old questions again, unless you act on what you receive - or at least have the courtesy to supply feedback.
Ditto Can’t be bothered to repeat myself, but my feelings and response are the same as I included into the following previous thread.
breastcancercare.org.uk/content.php?page_id=3659&forum_cmd=3&forum_id=31&topic=1917
Have you noticed something BCC You asked us to comment on your glossy new user involvement booklet and no one has. I think this rather illustrates the huge gulf between what we the users of these forums perceive our support needs and interests to be and what you perceive them to be.
I did once attend a ‘user involvment’ meeting, and though everyone was pleasant I felt like I had walked into a time warp. So many ‘peer volunteers’ who didn’t know about current treatments or even the difference between being er+ and er-. It wasn’t for me and I’ve not been back. By contrast I’ve got masses of information and support from women I’ve met virtually on this site (and subesquently corresponded with by e-mail or met.) A big advantage of the internet is that you get to ‘meet’ so many more people than is ever possible in face to face groups.
Your glossy booklet must have cost a fair bit to produce and I daresay some people might find it interesting. I thought the bit on the Same Difference Campaign was good, but I’m a bit bored about hearing of the Headstrong service and prosethesis fitting (and yes I was interviewed about the latter). And I know the Fashion Show is one of your biggest fund raising events but I wonder how many women feel like me that they are completely disinterested in it. I never wanted to be a model before or after breast cancer.
I also thought it a sad omission given another current thread in this forum that in giving lipservice to ‘people with breast cancer’ in the introduction you then failed to say one thing about how men are involved in BCC.
Where also are the voices of support for people with secondary breast cancer?
Overall I think the booklet bland and rather twee.
And so back to contact buttons…the facility to contact individuals who post on the forums is really important and precious. Often I see particular posts and want to repond personally and can’t or have to direct people to the other site.
I use both sites (and sometimes one in the USA )and both have their place but this forum is the one I keep returning to, but I just wish you would get your act together and really listen to what we the users of the forums want and think.
Jane
Adding my name to the petition You wish to know what your users want. We want contact buttons.
This is an excellent site, on the whole, which has suffered enormously since the revamp last Christmas. It is in danger of going even further downhill if you do not take seriously all the points made here. I know of no other charity with such status, which does not allow its members to contact each other personally. None of the reasons you have given in the past merit the removal of this important function.
Why don’t your technical bods contact BreastCancer.org or a similar site, if you need to know how to operate such a system safely? Come on, this is the internet in the 21st century. There should be no excuse!
Jenny.
Another plea for the return of the contacts button. Why are the pleas being ignored? Can somebody give us an answer please?
links Also - activate links in postings - maddening to have to copy and paste or retype every time.
Finding a voice THE BOOKLET
I was dismayed to see such an obviously expensive full colour glossy booklet, much of which will not apply to a particular breast cancer patient.
Much better to have detailed specific leaflets on individual topics.
One group who clearly don’t have a voice are those with secondaries! Now that NICE has calculated that half of all breast cancer patients will eventually get secondaries, we are hardly a small minority, So why are we so ignored? We filled in questionnaires and we saw a secondaries taskforce set up, but no real action. We have been asking for a national (rather than regionalised) Healthy Living Day tailored to the needs of secondaries patients for 2or 3 years now. We were told there was no demand, but the alternative Unhealthy Living Days arranged by secondaries patients themselves have flourished.
CONTACT BUTTONS
Yes, these were useful. I made several friends that way and it helped me enormously. I only had one bad experience and can live with that. Provided BCC give out warnings, the rest is up to us as responsible adults?
Adding my Name I don’t want to repeat everything that has already been said. I would just like to say I agree with all the comments made previously and I am adding my name in support.
Panda
Contact buttons I would like to reiterate the need for contact buttons to be reinstated. I like others when diagnosed was at my lowest ebb. To meet another lady from the Breast Cancer Care forum face to face for a coffee and a chat kept us going during our treatment. Such a shame that contact buttons are no longer available on this site. The personal messages I was sent via the contact button really helped me at a truly traumatic time.
I have met a truly wonderful friend through the means of being able to make personal contact. Such a shame that new users are no longer able to do this.
I received this brochure recently and wondered what it was for (until I read the covering letter). I too found it bland and knew immediately that it would not contain anything “scary” i.e. anything concerning secondaries. I suspect this publication is aimed more at a non-BC audience, including funders, charity commissioners etc. It’s the current thing in the voluntary sector to show that you are involving the people on whose behalf you claim to be speaking. Reading this brochure will make an outside audience feel that BCC is tailoring and building its services in response to user demand.