Use of the forum

Use of the forum

Postby TeacherDi » Mon Sep 12, 2011 8:52 am

Hi

Just thought I would say I am worried about the lack of use of the forum. As we all know people with pituitary disorders have conditions which by their very nature fluctuate, change, alter on a regular basis. They often lead to feelings of isolation and depression which means that places like the forum are absolutley vital. It is therefore a huge concern that since its re launch the forum isnt used anywhere near as much as it was. I know that for me it provided a ifeline during those difficult times that all of us get. and it is a lifeline that has almost disappeared. I understand that the forum and indeed the whole website costs money to run but perhaps we need to really look into ways to promote much more widespread use of the forum as it is really only useful if it is used and allows pituitary patients invaluable contact with each othe. Is it still open to people overseas? Could we use raising awareness month in October to also push the forum? Any other ideas?
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Re: Use of the forum

Postby Sandy » Tue Sep 13, 2011 8:25 am

Di, completely agree with you, you only have to see some of the current threads to know how important it is to many of us who do actually use it. I'm sure there's a lot of knowledge and experience amongst many PF members which could help others, just as there are lots of newly diagnosed folk (like me) who have many questions & who are so relieved not to be alone!

As we're a very specific and geographically diverse group, perhaps email and snail-mail are the best ways to target users - and also hosp Endo depts to, maybe with a poster & leaflet campaign? That'll have to run for more than a month of course, as our monitoring visits are typically months apart.
Sx
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Re: Use of the forum

Postby TeacherDi » Wed Sep 14, 2011 10:24 am

Thanks for the reply Sandy

And thank you for your valuable suggestions, perhaps somebody at the foundation could begin to take the actions you suggest. I already knew the value of the forum when I was feeling low recently but today I read a post under the 'living with pituitary' section on the forum and boy what a shock! Somebody really crying out for help posted a comment on Monday and hadnt had a relpy. Now I know it is only Wednesday but if you read the post you will understand why those two days of no reply would not have helped. I am sure that the 'old' forum would have resulted in replies within minutes. I myself posted a topic on the Growth Hormone section on Friday and as yet no reply, The problem is when you get to the stage of posting a topic it is often indicative of not being in a particularly good place and needing help or at least support so when no reply is forthcoming those feelings are compounded.
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Re: Use of the forum

Postby jemima » Wed Dec 21, 2011 11:52 am

Ladies

I totally agree with the poster/leaflet campaign, I only found out about it by a leaflet at the consultants office, otherwise I would have missed the PF!

But i think the reason there are less users is due to Facebook, as I know a lot of people went onto groups there when the forum closed, and I think many have not come back as there are a lot of pit chat groups on facebook.

What about a link to the forum and a big reopening ad on the PF facebook page - this might bring more people back here?

Xx J
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Re: Use of the forum

Postby Bill » Thu Dec 22, 2011 10:15 am

I'm not sure that Facebook is the problem. It seems to me that most pituitary patients either aren't being informed at hospitals or GPs about the PF or if they are informed then for whatever reason they still do not wish to join the PF. I also wonder how may new patients are diagnosed in a hospital each year? I know from talking with our Endo consultant in my area that he usually only gets about two cases of Cushings a year.
Our support group has certainly not picked up many new members in the past year and sometime when we do get people coming to meetings they don't come back. We are trying to address this problem.
I think maybe another problem is that their are so many different pituitary related conditions that it can be difficult to encompass them all and give everyone the help they might need.
I feel personally that we might benefit from an actual chatroom as well as a forum although I know this can be difficult to monitor and can present problems.
I think the lack of activity on the forum here certainly doesn't encourage people to come back - and can't be helpful for the people who are in dire need of support. :(
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Re: Use of the forum

Postby plum » Sat Dec 24, 2011 10:44 am

hi
yes, all makes sense.
plus also the extra struggle to try and 'get on with things' like 'normal life' etc or trying to forget that we are 'different' might mean some people don't think of using / contributing to the forum?
just an idea.
although sometimes there are a lot of 'views' to some topics so somebody is out there.
seasonal greetings to all.
plum
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Re: Use of the forum

Postby Bill » Sat Dec 24, 2011 10:53 am

Also I dare say that possibly some people's conditions are easier to cope with than others and therefore they don't feel the need for support.
I have also had complaints about people having difficulty accessing the forum - maybe the PF need to look at this too. :)
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Re: Use of the forum

Postby member_32033 » Thu Dec 29, 2011 11:25 am

Happy New Year to everyone. I've been very interested in the posts on this subject. My endocrine consultant always gives out PF literature when people are first diagnosed. However, at our most recent support group meeting and through other sources, several people told me that some other endocrinologists had not given out any reading matter, not even mentioning the help available from the PF. This was across two major NHS hospitals.

It really does look as though there is no standard policy when people are first diagnosed with regards to giving out some initial written information. This makes life especially difficult as there is very little support out there in the UK apart from the PF. I certainly found the first few months pretty daunting and the PF brochures and website made a big difference. The Forum is a great resource as quite often you think it's just you with a whole array of strange symptoms and then you read someone else has that symptom as well.

Best wishes

Anglo Belgian
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Re: Use of the forum

Postby emer » Sun Jan 01, 2012 10:59 pm

I imagine part of the problem is that actually there are quite a few other support groups and networks out there which are not charged for. Even if someone decides to pay for the Pituitary Foundation membership in order to access the forum, they have to go through the whole slow process of waiting for their login details to be sent by post; in the interim, anyone with Google can find multiple other support groups for people with various pituitary conditions.

In my experience, other groups tend to be too specific for me; they're for people with acromegaly or cushings etc. whereas this forum has the advantage of covering the whole range of pituitary issues. For someone like me with a very rare condition, that's invaluable, but for someone with acromegaly? Might as well just join the free groups, I guess.
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Re: Use of the forum

Postby Bill » Mon Jan 02, 2012 2:10 pm

Hi Emer
With reference to your last post, I might have misunderstood you but you seem to infer that Agromegaly is a common condition. There are in fact only 3 or 4 cases per million diagnosed each year which I think you might agree would make it pretty rare.
I myself don't suffer from this condition my own condition being far rarer, however I still would say Agromegaly is pretty rare.
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