Can you help us develop telephone support groups
Can you help us develop telephone support groups Over the past 12 months we have been increasing the number of telephone support groups which Breast Cancer Care offer. Some groups have been oversubscribed while sadly others have had to be cancelled due to too few members.
We are now looking at how to develop these groups and would like your help. We are opening up this thread on the chat forums to ask your views on two key questions:
The name of the groups. Does TSG tell you what the service is about? Does the phrase ‘support group’ put you off or encourage you to join? Do you have any suggestions for another name for the groups?
Where would you look for information on this type of service? Examples might be: a breast clinic, on the Internet, or in magazines. Would you have a preferred option and are there other places you would like to see the service publicised?
If you would post your answers and views in this thread it would be very useful.
Thanks in advance
Moderator
Breast Cancer Care
What exactly is a telephone support group?
Kelley
Can you give us some more information about which support groups were oversubscribed and which had too few members?
I already attend two local support groups so I probably wouldn’t join a telephone one. Unless it was a facilitated support group, which could provide something the more usual types of support group don’t.
I think calling them telephone support groups is fine. The key bit is agreeing how they will be run and their purpose.
I would expect to see publicity about them at breast clinics, on the internet and in magazines. Also, I’d like to make a plea on behalf of private patients. In my experience, Private Hospitals provide no information to patients newly diagnosed with breast cancer to help them find support. This something I’d like to see Breast Cancer Care follow up with the private sector.
I’m sure some people reading this post don’t have much sympathy for private patients, but we have the same fears and need for support as any other breast cancer patient and we aren’t given the information that could help us.
Do the Samaritans know about telephone support groups? If not, they might be interested in the details of local groups.
Mcgle
I made enquiries about the Secondary BC telephone support group but it was “junked” when there was insufficient support.
It was only by the most random chance that I happened upon any reference to such groups - it scarcely stands out from the information available on the website pages! (Likewise information about Secondary BC support groups: info about the UCH one is now updated, but it was at least 2 years out of date when i happened upon it - NB: I found that group is run by TWO MEN - unbelievable !!! )
I agree that information should be distributed in places where women are likely to SEE IT, such as BC clinics, etc. It’s scarcely surprising at present that these arrangements are not well-supported.
TSG’s never mind TSG’s I didn’t even know there was this website when I was dx 3 years ago - it would have helped allay a lot of my fears then and has been my absolute support system since. As I am 3 years down the line, after 2 surgeries, FEC chemo and radiotherapy, now on Arimidex, I would be happy to be a member of the TSG and give whatever knowledge, information, care and support to others. My hospital,(Derriford, Plymouth) which is a centre of excellence for breast cancer, had no information on support outside of the hospital.
I live too far away from Plymouth to attend the support group they have on the hospital premises, at The Mustard Tree Centre and would have found it invaluable to ring a local person who had breast cancer to talk through some of my queries/problems/fears.
I would suggest you have some kind of poster to be prominently displayed in every breast care centre with details of your services, on and off line. That is the place we all have to go., like it or not.
Could the Royal College of Nursing get involved in sending out details to all of their Specialised Breast Cancer Nurses? I am sure they have a newsletter of some kind.
I am just so thankful for this internet access, living in such an isolated place as South East Cornwall.
Liz
Private patients P.S. sorry to have forgotten to respond to this item. My best friend’s sister was dx with bc some 12 yrs ago at 42 yrs old, had BUPA insurance and went privately in London for a mastectomy - recon went horribly wrong and she now has a hernia that makes her look 7 months pregnant. She never, ever saw a breast care nurse, and still hasn’t. She is woefully ignorant about bc and was of no help when I was dx as she doesn’t even know her ER/PR/Her2 status. Thank god for the NHS and centres of excellence,.
Seconding Daphne I don’t think I’d be interested in a telephone support group…not my kind of thing…prefer face to face or on-line. But I know some women who would like this kind of support. and hope BCC can develop it.
I agree with Daphne that these services should be advertised through private hospitals as well as NHS. I know there are many strong views about private treatment, but I hope BCC would want its supports services advertised for everyone.
By the way lizziecee there is good and bad care in the NHS and private sectors. I was misdiagnosed in one bit of the NHS and then had superb treatment privately (a different team of doctors who also work in the NHS). And I know loads about my cancer…loads and loads!..I think the information we get and take depends on the kind of people with are and the kind of doctors we meet…as I said good and bad in both sectors. 12 years ago I don’t think many women knew their er pr her2 status…things have changed a lot…partly probably because of the work of breast cancer charities.
Jane
Support for Private Patients The reason why breast cancer patients in the private sector don’t receive the level of support they need is that private hospitals just don’t provide breast care nurses.
I think most private medical insurers would be prepared to pay for patients to see a breast care nurse (out of outpatient treatment “pots”), but if the private hospitals don’t recognise the need for breast care nurses nothing happens.
I think this is an area that the breast cancer charities should look into. The alternative is that private patients blag their way in to NHS clinics to see breast care nurses, which they are entitled to do if they can’t get a service they need privately. (Having some treatment as a private patient doesn’t mean you forfeit your NHS number or your obligations as a UK taxpayer). But this would put additional pressure on breast care nurses in NHS clinics.
Support for Private Patients I have had some of the same issues others have faced being treated private. The treatment I received was fantastic and thank goodness the medical insurance picked up all the bills. The Breast Care nurses have been good but as it is only one of the areas they look after I know it has been a bit hit and miss. I was referred to the NHS Breast Care service as I was told that eventhough I was a private patient I was entitled to at least 2 years of support. You could have fooled me. They have been in contact twice in the last 20 months. The first time I had to go to the clinic to look at the photos and discuss my mastectomy. The second a home visit 4 weeks out of hospital. At both meetings I was told they were not worried about me and how I would deal with the operation as I was a strong person and a coper!!! Well thanks very much - maybe at the time I was but I am not at the moment and have they even contacted me to see how I am!!???
Like other people I have have found most information myself through this site and others. The forums have been a fantastic source of information. However I do feel there is a need to raise the awareness of what support is available and what really are your rights during all this. What is reasonable (or unreasonalbe) to ask for?!!!
I think telephone support groups are a good idea but not sure how you really move these forward. I personally found It difficult to pick the phone up to friends and family at times (coz I didn’t want to worry them) so I know I would initially feel awkward admitting I needed support. Some of the problem is that by the time you need help or want to talk to someone you don’t know how to go about this.
Move into the 21st Century!!! Personally I think the whole way that the charity sector (incl BCC)communicates needs to be radically appraised.
I have spent the past 20 years working in Community Centres in the south east and have to say that in this time I have grown heartily sick of looking at piles of what must amount to hundreds of thousands of unread leaflets (including those from BCC) gathering dust on tables alongside noticeboards piled three deep with curling, out of date posters. Just because you send them out, it doesn’t mean people actually read them.
I do my best to recycle, do anything to avoid receiving junk mail and yet i see charities adding to the problem of waste by publicising yourselves.
It’s now become something of a hobby to throw them straight in the recycling bin when, after a few months, it becomes apparent that no one is really interested in the contents.
Of course there is always a need for information to be presented in this way, but what not look around at some other, more 21st century means of getting it across as well?? I no longer have a TV. Instead I visit the BBC website every day where I’m able to watch BBC programmes and information videos. The Breast Cancer Care website should be as dynamic as this one using videos and animations to get info across rather than just page after page of text. In 10 years time this is exactly how we will all be watching TV programmes and using the web. Print is very much on its way out! Apart from the fact that the web is far more entertaining, it’s also much easier to update and therefore information should always be accurate. My GP’s surgery has a video and web kiosk in the waiting room, they are also all over the streets of London as well as in libraries and community centres- it’s incredibly easy for people to get access to the Internet.
If this is the opinion of a 49 year old woman then I’m pretty sure that anyone younger than me (and there are plently who visit this site) will be in agreement.
Rant over now! Before I sign off, I’d like to make it clear that I DO think BCC do an incredibly good job, but why not try and make it even better!!
Well we used to have contact buttons here… I think they would be more useful or as useful as any telephone support group. It was great to have the option to contact others going through the same treatment, away from the boards, sometimes you don’t want to post about your life on the www, at least I don’t. But these have been removed and I’m not sure they are ever going to return? I know there were a few problems and some got unwanted emails but it would be nice to have the contact button back as an option.
TSGs - I think these are agood idea, although not something i think i would personally use. I would make them know about at the hospital breast clinics. As someone else said (sorry - can’t see post) its soemwhere thate we all go to, like it or not.
Leaflets being unread - my breast care nurse gives me relevant leaflets when i meet her, and i have actually read them as a results of that. Others at the hospital are in the chemo waiting area, and you tend to read because you get bored of waiting!! Have also taken down info from posters there. Leaflets in private hospitals is a good idea, but i think they tend not to encourage their patients to use nhs resources and charities (‘free’ services), so they may need persuading.
NHS support - you have to make use of them - they won’t foits themselves on you. Being a patient within the nhs hospital does bring you into more contact with them. My breast care nurse leaves me alone but stresses that i must contact her with any queries whatsoever - which i do, and she is an absolute star, with all the time in the world for me. They also run the support group at my hospital.
Internet - yes, its easy to access, but there is still a large percentage of the population that do not have access, have never used the internet (and don’t have/have never used a computer), and would hence never dream of going into a library or such like to go online, as they don’t know how. i speak as someone who work in the field - sometimes I have to remind others how many people just don’t have/use the internet although the rest of us take it for granted. To say that everyone can access it, doesn’t mean they will or that they know how.
Another one here who is unlikely to use telephone support group. Live in a big city, local support groups available which I attend. Is there anyone reading this who has participated in such a group who could tell us in general a bit about how it works
The sort of information people want/need etc. varies at different times. Ditto the way this is provided. Also echoing whats been said already - info /support isn’t as readily available if your treatment was carried out privately.
I also think the reinstatement of contact buttons or some other direct form of contact would be far more useful.
Hmmmm… I agree that there are still a lot of people who don’t use the internet, but there are also many who do (like everyone in this chat room, for example). When i go into schools now and see 5 year old using computers I’m pretty certain that in the coming years the web will become our first, and possibly only, place to visit for information. If BCC want to get more people participating in their services then they need to acknowledge this and start thinking about new ways in which to attract attention. Why not make elements of the site available for podcasting, for example? Or stream information to mobile phones?? And I know that this is something that may appeal largely to a younger audeince, but it is just another way of getting infomation out there. The pile of leaflets can sit on the table for the people who are interested in them, but please give the technically savvy ones something else to look at.
Yes contact buttons This is a really important issue. I think it is ludicrous that we have to suggest people on this site go to another site if they want to make personal contact with us. There is a place for lots of different kind sof breast cancer support sites, but surely surely the major charity offering support to people with breast acncer should have got this sorted ages ago?
Whatever happened to the questionnaire which many of us filled in? Please can you let us know…
and once again…bring back contact buttons as a priority.
Finally I’m someone who likes leaflets and the written word and doesn’t like lots of pictures so don’t give up on the leaflets please.
Jane
Info will always need to be provided in a variety of formats - leaflets, electronic, phone etc.
We often hear the 80/50 stat quoted I wonder just how many of the people diagnosed at the older end of this range will actually be PC literate (and I seriously doubt given a dignosis of BC, if an individual, given a website address would think - oh yes - now is the time to get to grips with the internet) “Paper” info is still necessary. I personally wou;d prefer leaflets (or what ever) on a specific topic rather than a more general publication such as viva (or whatever BCC called it).
Contact buttons reinstated urgently please.
I have seen the calls for contact buttons - this would be invaluable and is readily available on all kinds of other forums.
I value the advice and support of those that have gone, and are through, this journey far above anything else. For example, I would love to be able to contact some of the people on here who are at the same stage as me for chat and mutual support.
Still banging on about contact buttons. It’s thanks to the old (!) contact buttons that I’m able to meet 3 friends for a pub lunch tomorrow.
Newbies to the forums are missing out.
Belinda.