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New topic areas for specific groups

User
Posted 07 January 2016 09:46:23(UTC)

Hi all,

For the next few months we’re going to be trialling some dedicated spaces for people with particular identities or life circumstances who we know don’t usually access traditional support groups:

- Younger men with prostate cancer

- African/African Caribbean men with prostate cancer

- Gay and bisexual men with prostate cancer

- Transgender women with prostate cancer

We know that people in these categories don’t often seek support at traditional in-person support groups. We don’t know why that is, but we want to see if a dedicated online space would be a useful alternative form of support. 

Obviously, conversations related to these experiences are welcome in any other topic areas as well. But we want to see if a dedicated space would make people feel more comfortable sharing.

If none of these apply to you, don’t worry! The old familiar topic areas will be just the same. But if you are part of one of these groups, please have a look, and maybe start an introduction thread so others know you’re around. If you know others who are part of these groups and might benefit, please let them know.

Q: Who can post in these areas?

A: The new areas are for posts by members with these particular life experiences. We're not blocking access for others, but we respectfully ask those who don’t have those experiences not to post there. If posts are made that seem out of place, please just use the report tool (the “!” button) to let a moderator know and we'll make changes as needed to keep the space focused on those it’s intended for.

Best,

Sadie

Thanked 1 time
User
Posted 07 January 2016 11:43:00(UTC)
Sadie
I think this is a nice idea, I really hope I can say what I want to without using any politically incorrect terms, I have no desire to be offensive or upset anyone if in my own naievity I say something out of order.

I do think people who have come to terms with their own sexuality, or who have never had any issues with their sexuality will still post in the main topic areas. That probably also applies to all your target groups. Of course it is totally possible to post on the main forum without ever actually sharing any of that information.

Maybe the people that you are trying to encourage in the sexual or gender oriented group may be afraid to post because of the "open forum status" and being discovered by friends, family or work colleagues who had no previous knowledge of their own individual personal life, either their sexuality or even that they have PCa.

So having the conversations open to all will inevitably get some readers or contributors who are not entirely genuine. I would love to think that the vast majority of forum members are sensible enough, even if they do have any prejudice, to just stay out of those conversations but sadly I think that may not be the case.

Also Many of us regular forum members use the recent conversations tab to keep up to date with our friends and fellow members, I know that I for one, never actually look at the topic just what is said in the post. To me the poster's sexual orientation, gender, age, race or religion is totally immaterial as long as their purpose is to seek help or support on anything to do with any aspect of PCa.

Defintely worth trying as I am sure many people do miss out on some very valuable support especially if the questions or support they need are really best answered by someone in a simialr situation to themself.

All your hard work is very much appreciated

best wishes
xx
Mo


Thanked 3 times
User
Posted 07 January 2016 21:14:01(UTC)

Humph.

When we have had gay or trans members join in the past I have been the first or one of the first to comment and direct them to other members that may particularly understand their needs or context. Now I am supposed to not comment? What if no one else comments either - shall we have a time limit .... if no one else offers a response within two days, or two weeks or whatever, then it becomes a free for all.

How young is young? If my husband was 50 when diagnosed, can I offer comments in that section? What if he was a young 60 year old? Or 70 but very active?

I sort of get it but I don't ... sorry Sadie :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


Thanked 2 times
User
Posted 07 January 2016 09:46:23(UTC)

Hi all,

For the next few months we’re going to be trialling some dedicated spaces for people with particular identities or life circumstances who we know don’t usually access traditional support groups:

- Younger men with prostate cancer

- African/African Caribbean men with prostate cancer

- Gay and bisexual men with prostate cancer

- Transgender women with prostate cancer

We know that people in these categories don’t often seek support at traditional in-person support groups. We don’t know why that is, but we want to see if a dedicated online space would be a useful alternative form of support. 

Obviously, conversations related to these experiences are welcome in any other topic areas as well. But we want to see if a dedicated space would make people feel more comfortable sharing.

If none of these apply to you, don’t worry! The old familiar topic areas will be just the same. But if you are part of one of these groups, please have a look, and maybe start an introduction thread so others know you’re around. If you know others who are part of these groups and might benefit, please let them know.

Q: Who can post in these areas?

A: The new areas are for posts by members with these particular life experiences. We're not blocking access for others, but we respectfully ask those who don’t have those experiences not to post there. If posts are made that seem out of place, please just use the report tool (the “!” button) to let a moderator know and we'll make changes as needed to keep the space focused on those it’s intended for.

Best,

Sadie

Thanked 1 time
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User
Posted 07 January 2016 11:43:00(UTC)
Sadie
I think this is a nice idea, I really hope I can say what I want to without using any politically incorrect terms, I have no desire to be offensive or upset anyone if in my own naievity I say something out of order.

I do think people who have come to terms with their own sexuality, or who have never had any issues with their sexuality will still post in the main topic areas. That probably also applies to all your target groups. Of course it is totally possible to post on the main forum without ever actually sharing any of that information.

Maybe the people that you are trying to encourage in the sexual or gender oriented group may be afraid to post because of the "open forum status" and being discovered by friends, family or work colleagues who had no previous knowledge of their own individual personal life, either their sexuality or even that they have PCa.

So having the conversations open to all will inevitably get some readers or contributors who are not entirely genuine. I would love to think that the vast majority of forum members are sensible enough, even if they do have any prejudice, to just stay out of those conversations but sadly I think that may not be the case.

Also Many of us regular forum members use the recent conversations tab to keep up to date with our friends and fellow members, I know that I for one, never actually look at the topic just what is said in the post. To me the poster's sexual orientation, gender, age, race or religion is totally immaterial as long as their purpose is to seek help or support on anything to do with any aspect of PCa.

Defintely worth trying as I am sure many people do miss out on some very valuable support especially if the questions or support they need are really best answered by someone in a simialr situation to themself.

All your hard work is very much appreciated

best wishes
xx
Mo


Thanked 3 times
User
Posted 07 January 2016 14:06:06(UTC)

Hi Sadie,

I must admit my thoughts were exactly the same as Mo's when I read this. Should  I now not post in the thread of someone who has had a prostatectomy, for example, when my knowledge is of advanced disease even though I may simply wish to offer my support and encouragement to the person who is going through a different treatment ? Recently we had someone post who was a 'swinger'. This didn't stop others who didn't espouse that lifestyle offering advice and unjudgemental support if I remember rightly ? We all have one thing in common, we are affected by PCa in some manner, we all hurt and are anxious and sad in the face of diagnosis and treatment. Of course, we need to reach out to everyone affected by this disease but I'm not too sure if compartmentalising people is the right way to do it though I also understand where you are coming from, Regards,

 

Fiona.

Thanked 1 time
User
Posted 07 January 2016 15:08:20(UTC)

I wouldn't know enough about  the lifestyles/ethnicity of a prostate cancer sufferer if it is different to mine, to be able to judge, so I hope I would just treat them as another person on the same journey as us.

As it is, whenever I reply and it's relevant I will say that there are a number of wives and partners on here prepared to offer advice.

I don't assume that we are all married or if we are that the partner is the opposite sex.

All you can do is try Sadie. If it works and fills a need then all well and good

We can't control the winds - but we can adjust our sails
User
Posted 07 January 2016 15:59:42(UTC)

I think its a great idea but have wondered how PCUK is advertising this to such groups so they can use it ?
If I had joined this forum with obviously differing sexual tastes / needs etc , then I expect I would be keen to read but never post to a seemingly heterosexual forum and many of their partners etc. I'm sure there would be things to discuss that most of us would not have experience of . So separate "safe" areas are a great idea . We are not being excluded , but knock before you enter kind of thing ! Even on our wonderful forum , if my PM's are anything to go by , there are a number of men who want to discuss post-op sex , orgasm and ED in far more detail , but feel incapable of airing it so publicly. Well done Sadie
Chris




If life gives you lemons , then make lemonade
User
Posted 07 January 2016 21:14:01(UTC)

Humph.

When we have had gay or trans members join in the past I have been the first or one of the first to comment and direct them to other members that may particularly understand their needs or context. Now I am supposed to not comment? What if no one else comments either - shall we have a time limit .... if no one else offers a response within two days, or two weeks or whatever, then it becomes a free for all.

How young is young? If my husband was 50 when diagnosed, can I offer comments in that section? What if he was a young 60 year old? Or 70 but very active?

I sort of get it but I don't ... sorry Sadie :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


Thanked 2 times
User
Posted 07 January 2016 23:00:06(UTC)

I think it is worth trying just to see if it does attract more people. We know that at the moment the community members are but a small percentage of people affected by PCa.

Bri

User
Posted 08 January 2016 02:22:13(UTC)

I wonder whether men are told these days about support groups and this Community when they are diagnosed, either by consultant or GP. It would be interesting to know this.

I can understand why a separate section might be thought appropriate for Trans and Gays as these are  distinct minorities with sometimes special needs and not many have raised issues on the forum.  However, those that have have been supported like everybody else which is proper and inclusive.  To ask them to post in a separate area is discriminatory and as proposed they would lose the benefit of the experience of many other members, friends and family.  So this could be counterproductive and I feel not well thought through.  I don't see the need for a separate place for younger men or Afro/Caribbean, though I am aware the latter are more prone to PCa at an earlier age but why fragment unnecessarily?

Why not spent some time sorting out the search facility to enable people to assess relevant threads from the forum rather than having to plow through a load of irrelevant detail that is brought up?   I find it less laborious googling what I want to find to bring me to an appropriate thread on the forum which is a ridiculous way of having to go about it.  The other thing is the introduction of 'stickies' which has been brought up a number of times over the years but nothing has been done about it.  

Barry
User
Posted 08 January 2016 18:24:59(UTC)

Hear hear - the search function is dreadful and I also resort to google to find specific posts :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 08 January 2016 19:11:05(UTC)

The search function is useless on an epic scale. So is the member search !! I even find my saved conversations disappear regularly , as do my conversations that I've posted in. But overall a great forum with lovely members all meaning good.
I still personally don't see the issue with separate areas for minority groups. I even suggested to Sadie adding an area for people with mental health issues who are coping with PCa on top of everything else. We are not all the same and I think that any strategy that encourages otherwise hesitant people to get help with their cancer is good news.
I remember the lady that was a swinger and despite some considerate posts I feel other posts definitely desuaded her from further help. I myself have felt very grateful indeed to have been accepted "onboard" , and to be honest you guys have been lifesavers , but not unexpectedly I received a few posts describing me as irrational and negative. I wouldn't dispute those views to be honest , but it would be a sin if someone was deterred from using this service because their views and / or lifestyle choices didn't meet the norm.
Nobody would be stopping anyone from viewing and replying to posts.
Thanks to the forum and everyone in it
Chris




If life gives you lemons , then make lemonade
User
Posted 08 January 2016 19:54:20(UTC)
Hello in answer to your question Barry we knew nothing about pcuk, nothing from Dr, Consultant or Specialist Nurse. In fact when Paul asked for help for myself and our Son he was advised by the Nurse she could only help him. I found out about this site two months later as I was too scared to use the internet. I believe that if I had known earlier that there was support available I wouldn't be in the position I am now. I really believe that there should be more emphasis on promoting the site as a whole from the moment pc is mentioned. Chris totally agree with mental health section it's not just the physical perhaps extend this to also to Partners and Children as it affects all the family.
User
Posted 08 January 2016 21:44:33(UTC)

We were given a paper copy of the PCUK toolkit (in its previous form) at the diagnosis appointment and the back page included this website in the support section. The forum is also listed on a poster in the urology department.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 08 January 2016 23:47:38(UTC)

It rather looks like some men are told about support when diagnosed or later when they have treatment , whilst others not at all. It would be of greatest benefit to men and their families if they were told on diagnosis when this bombshell occurs. I wonder whether Sadie or another from this charity could use their good offices to contact Commissioning Groups suggesting they in turn could ask their GP's to tell patients about this Community, (unless there is a better way).

Barry
User
Posted 09 January 2016 02:00:08(UTC)
Ok, so Trevor is not gay but he is Afro Caribbean would he have felt more comorfable posting under a sub heading , no absolutely not, I have to agree with Lynn and Mo .
Sorry Saddie but this smacks of segregation to me it is compartmentalising people. Also agre with Barry money and effort would be better directed in literature given when men are first diagnosed directing them to the PCUK forum. 1 in 4 men diagnosed are black but they are not portraid in the pamphlet .

East Enders was a brilliant opportunity to get the message out there but it was chosen to portray an 80 year old Caucasian male . This could have been such a message for a younger male gay or black both would have been brilliant.
Honestly until you can put these minority groups in the literature then they are not going to post it doesn't matter if they are in (special) headings or not they won't even know that PCUK exhists
I have always said this but the advertising and message needs to be out there and sadl,y men of all different sexual orientation colour or creed is not getting through..

Every women in the country understand what a pink ribbon symbolis , do Breast cancer forums have seperate sections for gay women and black. Women? I don't think so.

Is it a kind of safe house that you are thinking , blacks and gays only , I do understand what you are trying to achieve
But I really don't think this is the right way to go about .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 09 January 2016 02:12:13(UTC)

We might have to eat our words though ladies - it strikes me that none of the gay/bi members have commented against the idea publicly so perhaps they would welcome a dedicated space. I thought I was pretty on the ball with LGBT issues but never comsidered the possibility that one of us WAGs could be a transgender woman with PCa - that must be terrible for those women when they have to attend clinics etc.

A section for young men - what about young wives of older men .... would they be allowed in?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 09 January 2016 02:15:39(UTC)

Feel I must agree with the money and time would be better spent on promoting the site and PCaUK
Regards
Nidve

run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 10 January 2016 22:11:37(UTC)

Originally Posted by: Online Community Member

Hi all,

For the next few months we’re going to be trialling some dedicated spaces for people with particular identities or life circumstances who we know don’t usually access traditional support groups:

- Younger men with prostate cancer

- African/African Caribbean men with prostate cancer

- Gay and bisexual men with prostate cancer

- Transgender women with prostate cancer

We know that people in these categories don’t often seek support at traditional in-person support groups. We don’t know why that is, but we want to see if a dedicated online space would be a useful alternative form of support. 

Obviously, conversations related to these experiences are welcome in any other topic areas as well. But we want to see if a dedicated space would make people feel more comfortable sharing.

If none of these apply to you, don’t worry! The old familiar topic areas will be just the same. But if you are part of one of these groups, please have a look, and maybe start an introduction thread so others know you’re around. If you know others who are part of these groups and might benefit, please let them know.

Q: Who can post in these areas?

A: The new areas are for posts by members with these particular life experiences. We're not blocking access for others, but we respectfully ask those who don’t have those experiences not to post there. If posts are made that seem out of place, please just use the report tool (the “!” button) to let a moderator know and we'll make changes as needed to keep the space focused on those it’s intended for.

Best,

Sadie

Good evening Sadie,

Not sure why so much comment has been made on a pronouncement?

Noted

dave

 

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 12 January 2016 09:42:32(UTC)

We tried to make it really clear in the announcement that we would never ask anyone to segregate themselves and their conversations away from others unless they preferred to do so for their own reasons. We would never want to segregate anyone.

We know that, among members who post here already, people are very unlikely to feel the need for these separate areas themselves – by definition, people who are here already are happy enough with the existing topic areas to keep posting. But there are a lot of people who aren’t here to post on this thread – say, transgender women sitting at home googling for anything at all relevant to trans women with prostate cancer – who might not find anything at all if we didn't try providing a space. And there might be others who do have access to mixed resources where a majority of people don’t share an experience which is important to them, but may have had bad experiences and don’t feel comfortable sharing in that environment.

Some in this thread have said they want us instead to promote the community and our other services to more men at the point of diagnosis. We do that – we have a whole team that works on outreach to health professionals and trying to get more people to share our services and resources with their patients. Adding these groups isn't taking away from that – it’s not cost us anything to create them and we’re going to try promoting them with word of mouth and free or extremely low cost search advertising.

Thanks so much to all for engaging with this discussion and sharing your views – it’s clear that everyone cares a lot about this community. Again this is just a trial to reach people who aren't currently being reached and it shouldn't change anything for community members who already post here.

Best,
Sadie

User
Posted 12 January 2016 12:20:13(UTC)

Do what you have to do Sadie to reach as many men/transgender women as it's possible to reach

We can't control the winds - but we can adjust our sails
User
Posted 22 March 2017 11:46:32(UTC)

TOPIC AREAS

Let me start by saying thank you, PCUK helpline and Forum has been an enormous help for me in terms of information and support and I am truly grateful. I hope my post here is seen as constructive and not critical.

I had my op (RARP) on 26th January 2017 and I am now going through many of the issues commonly experienced by others. In that regard I am pursuing those issues in the on-line forum.

I have a suggestion for that forum . . . .

Users (me) want to find answers to questions. The forum has 'Topic' areas. The flow chart starting with a PSA test will branch out in many direction as different men have different diagnosis and choose different options with different results. That said there are some common issues and I would argue that incontinence is the commonest common issue. In that regard I suspect that the issues around incontinence are different for those choosing different treatment options and similar for those opting for the same treatment option?

I suggest that incontinence is worthy of a topic area of its own and it would be helpful if that topic area was divided into, Incontinence after RARP, Incontinence after Open Surgery, Incontinence after Radiotherapy etc. OR, perhaps an RARP Topic area and other treatment option have a Topic area of their own with sub topics relative to those treatment options e.g. RARP + sub topic Incontinence after RARP.

Why? I had RARP; I believe it would help me if I understood the detail of what was cut out, cut through, taken away and what I was left with; I believe it would help me if I understood the mechanics/physiology of what was, what is and what I should try and achieve; in that regard I don't believe it will help ME (a post op RARP) reading the experiences of others who had different treatments.

Thanks

User
Posted 22 March 2017 17:48:35(UTC)

But even with a specific topic area you are going to have the same few people responding to your questions Nomad - questions that are so specific only your surgeon can answer them. If you don't want people that have had other treatments to reply then just say on your thread 'replies from others that have had LRP only, please.' I think what you will find is that you don't get many replies because other members don't know why you are incontinent. You have already found that when you ask direct questions of other men they haven't responded - not because they don't care but because they are not the surgeon that cut your tubes. People like me and Johsan may not be what you want but we reply because we hate to see anyone getting no responses. I will desist if that is what you prefer

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


Thanked 1 time
User
Posted 22 March 2017 18:46:07(UTC)

Me too.
I have no wish to offend anyone or assume that I know (as a mere woman) what men going through PC, treatments and after effects, feel like
I answer if I think a new person wants a bit of a boost and sometimes I worry that a newbie will feel rejected if there is a delay in replying.

 

We can't control the winds - but we can adjust our sails
User
Posted 22 March 2017 23:15:04(UTC)

I think Michael may have been misunderstood. As I read it, he is wanting a topic section for 'Incontinence', sub sectioned into treatment that gave rise to it. He does not wish to spend time reading about various treatments for other things from whosoever or have I got it wrong?

If I am correct, where would such refinement end. Many men also have ED, would it be sensible to have a section for this with subsections for men who had robotic and open, for those using pumps and various other ways? In the same way subsections could be introduced for various forms of treatment to the point it became absurd.

Of course men, their partners and family are foremost interested in their own situation and there is nothing to stop them asking any question and they only need read what interests them. However, this is a support forum where members not only seek support but give it to others. To do this, it helps if members increase their knowledge of the subject by reading about situations and treatment that affects others and not just them!


i

Barry
User
Posted 22 March 2017 23:23:26(UTC)

I've found the general approach to who reads/answers posts works really well for me ... when I've wanted a specific answer I've just asked a specific question and have always had lots of replies (some more to the point than others, but all encouraging and friendly which is one of the things I like about this forum.

BUT the fact that very few of us use the tags option means that it's very hard to hunt for / find previous threads on a topic (which is what I tried to do when I first joined). There must be lots of useful stuff out there that hardly anyone can recall. Maybe if there was a drop-down menu of key tag topics that we could use when appropriate it would help?

 

User
Posted 22 March 2017 23:40:39(UTC)

Good points - I have never used the tags but will look at them next time I start a thread.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


 
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