Help needed with research

Breast Cancer Care is working with Breakthrough Breast Cancer and the British Association of Surgical Oncologists (BASO) to find out what information is collected and published about breast cancer care and services. We have asked a research company, Spinach, to survey members of the general public, people affected by breast cancer and healthcare professionals to find out what information they are interested in, where they would like to find it and how it should be presented. If you are interested in possibly joining an informal hour and a half group discussion on 30th or 31st October, please contact Clare Meloy at Spinach to find out more. You can call her on 020 7619 6827 or email <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%63%6c%61%72%65%40%73%70%69%6e%61%63%68%2e%63%6f%2e%75%6b%22%3e%63%6c%61%72%65%40%73%70%69%6e%61%63%68%2e%63%6f%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> Thank you!

Most of the information we need is available, if we know where to look. Some are better than others at finding the information they need. It could be that the elderly, those without access to the internet etc. need extra help?

In my view, the biggest shortfalls in information are concerning secondaries, e.g. :
*how many of us
*age distribution at time of secondaries diagnosis
*what tests are done to check for secondaries after primary cancer treatment is completed (most were only ever checked out for local recurrence with annual mammograms)
*updated survival stats (are most of us dead within 4 years as I suspect)
*the treatments we receive (given to all who need them or a postcode lottery)
*how many are experiencing financial difficulties

Was this an on-line chat being considered on 30th or 31st October? If any significant number number turn up the time will not be enough for any real discussion (90 minutes will reduce to 75 after introductory pleasantries and closing remarks are taken out of the time. So, 15 would get 5 minutes each? Will Clare Melroy be just as happy to take account of emailed lists?

This also avoids anyone who is feeling ill at the time, or who has other commitments, being left out?

Thank you very much for your helpful comments. The focus groups on 30th and 31st October are face to face groups taking place in London, Manchester and Huntingdon. For people who might be interested in contributing but can’t attend, we intend to offer an alternative, either with a live chat online or by phone, in early November.

Hi i am going to attend the Manchester one, as its quite near to me, i have had an email and a phone call from Claire (who sounds very pleasant), they are asking that you get there a few minutes early so as to do introductions and get settled, will let you know how it goes

Alisonxxxx

I would be interested in attending the one taking place in Huntindon so could you forward me details please?

Jenny.

To the moderator: Why are there never any meetings, focus groups etc in the far south west, i.e. Plymouth?
Liz

Hi Liz

I will make sure your comments are forwarded to the relevant teams at Breast Cancer Care.

Kind Regards
Sam
Moderator
Breast Cancer Care

Plymouth area is a poor relation where this kind of involvement is involved. I am glad Liz raised this point and it has been acknowledged.

Linda

Can I comment that these forums should be UK wide - including Scotland, Ireland and Wales. I would love to be involved - but stay outside Edinburgh. It would be great if they were spread out over the whole of the UK.

Lynne

Any forums planned for Wales, I live in Pembrokeshire, we seem to have very little in the way of forums etc. Any advice on who I could contact with a view to attending a forum in Wales. Thanks.

Linda

Hi

I agree the far south west, i.e exeter seems short on forums as well

I think the whole of the south west is short on forums. I am in Bristol

Hi Jennywren

If you would like to contact Clare Meloy at Spinach, you can call her on 020 7619 6827 or email <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%63%6c%61%72%65%40%73%70%69%6e%61%63%68%2e%63%6f%2e%75%6b%22%3e%63%6c%61%72%65%40%73%70%69%6e%61%63%68%2e%63%6f%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> for more information about the group in Huntindon.

Kind Regards
Sam
Moderator
Breast Cancer Care

HI all

I have been asked to pass this on by the staff at Breast Cancer Care who are organising this.

Lucy

Moderator

‘We’ve passed on your comments about the locations of these focus groups and they’ve been noted for the future. The budget for this particular piece of research is quite limited, which means that the number of groups is small and they need to be held in areas where the researchers think attendance might be best. Thanks to everyone who is joining in, or who has emailed comments instead. There are still a few places left for the groups if anyone else is interested - Tuesday or Wednesday next week in London, Manchester or Huntingdon. Please call Clare Meloy on 020 7619 6827 or email <script type=“text/javascript”>eval(unescape(’%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%63%6c%61%72%65%40%73%70%69%6e%61%63%68%2e%63%6f%2e%75%6b%22%3e%63%6c%61%72%65%40%73%70%69%6e%61%63%68%2e%63%6f%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> ’

Hi

I think it’s a shame this is such short notice when so important.

As the budget is so limited can I suggest that BCC consider following up with the survey results so we can all see what has been asked and the range of answers given and maybe we more distant members could even have an online survey? That way Spinach will be able to survey all geographical areas if they’re interested.

I’d second Holeybones’ list and add the need for information specific to high risk women, those with genetic mutations, also information about counselling/emotional support AFTER treatment has finished. Information about ongoing surveillance after treatment would be useful because it differs by oncologist!

I’ve been told of a different focus group being held in London on the 15th November - barely a week’s notice! No idea of the time of day, the venue, how long it’s supposed to take… The BCC contact email bounced back with an out of office message and she won’t be back till next week. Not much flipping use if I have to organise time off work and childcare!

Can I make a plea that we get given better information about these groups, and a decent amount of notice? We all have busy lives and most of us are feeling pretty ill, and it isn’t easy to just drop everything and come running when a meeting is held. These groups would be better attended and therefore more effective if they were made more accessible.

I’ve emailed an alternative person and I hope they manage to reply, but does anyone happen to know the details? Moderator?

The two focus groups (one in London and the other Sheffield) stemmed (I think) from Macmillan’s involvement as they (Macmillan) posted info on these a while back which obviously isn’t that helpful if you’re not on their mailing list.

There’ll also be an on-line survey between 20-25th Nov for people who can’t make either of the focus groups and that’s what I intend to do because as you say silverlady it doesn’t give you a lot of notice.

Hope this helps - no doubt the Moderator will be able to give you more info.

Pinkdove

Hi Silverlady

I am very sorry about this and I am passing on your comments to the relevant people, so I hope we can clarify this situation soon.

Kind regards

Ann

Interactive Services Manager

I also only heard on Wednesday about the focus groups next week on ‘survivorhsip’ a controversial term…from another forum user. I am supposed to be on BCC’s mailing list but have changed my e-mail address…and though I’ve told admin people at BCC seem now to be out of the loop. I e-mailed someone about attending but yes she is on leave till Monday.

I very much want to go to one of the London focus groups and hope there is a place.

Anyone got any thoughts/views on the use of the term ‘survivorship’?

Jane

Hi Jane

If you send me your email addy in a PM on the other site, I can forward you the email if you like.

I don’t like the phrase but it’s too complicated to explain why! I’m pleased to see that the focus groups include sessions for women with secondary bc instead of ignoring us or lumping us in with all the others as if we’re all the same.