Hi Everyone
Sorry this is so late, I had a lot on today what with the impromptu meeting having to be fitted round my usual Sunday activities such as taking Caja to work and back walking the dog, doing the shopping, and travel plans for her going out tonight and other things I had to do today
so I have only just had time to sit down and write this all up.
Anyway, a few of the management met today - its Ok as we had said we would get together one weekend before Christmas so this just brought it forward one week.
The following will be a bit like minutes to our meeting:No one had any problem at all in there being two sections to the PP thread, one for anyone to answer and one that is a Diary (we could actually call it a PP diary?)
But it was suggested that there were actually three sections: queries, PP diary and general support?
The problem was as you so rightly pointed out Kate, was with the idea of a medical professional being responsible for answering this section.
There are several practical problems with this; one is that most medical professionals in the UK work for the NHS
One is :
There can be a conflict of interests in a medical professional working for the NHS participating in a 'service user/self help ' group.
For instance one of our management committee who came today is a medical professional, her current area is completely different from PP or PNI ( but she has in the past worked with women with PNI ) however to be ‘officially’ on our management committee she had to ask permission and was told that she had to keep her involvement only at management level and to take and active role she would have to re-negotiate and this could cause conflict for her job in the NHS so would be unlikely to be approved.
( the two GPs who offer us advice on medication have simular difficulties with the idea of actually coming on the forum themselves, even if this was what we want on the forum - which we do not on the whole as we only require there back up behind the scenes)
In addition to the issues above, being on a forum like this requires so much personal time it is basically a labour of love and therefore we doubt we could ever get a medical professional to put in this time as after a full days work 'in the field '
I would have thought most would just not want to put in this effort voluntary even if they were past sufferers of PNI it would be hard to find the commitment required and if they were not personally survivors or sufferers of PNI there would be little interest in taking on this very time consuming and often upsetting task outside working hours - and who could blame them?
But the most important factor to this forum is that this is a;
‘Self help and mutual support forum' and is funded from the: 'NHS service user and self help budget'
and to have a medical professional entirely responsible for answering a section on here would be against the very core of what this forum is about and what it stands for.
The committee felt that if it was at all possible to find someone willing to give the time that was currently both 'retired' form any work within the NHS and had experienced PP themselves, then this might be feasible and acceptable.
But while we will try for this, the chances of this are we feel at best unlikely
The management group wanted Kate to consider the possibility that she was.....
'attempting to change the forum in such a way as to meet her own needs which could be at the detriment of others needs'
Something that Kate actually recognised when she said:
‘ but maybe Vikki was right and this is not the place'
It is not possible to change a forum like this to meet the needs of one - as this forum has to cater for many people with many different experiences and has to keep to a middle ground as much as possible so as to support as many as possible.
***This was my interpretation of some of the points that were covered but the management wanted to say this:
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We are very sorry, and concerned, that this forum that has always been so positive for most who use it is now experiencing conflict of this kind.
This would seem unnecessary and that it is one or at most two people that are unhappy with the way the forum is run, while many more are expressing confidence in it.
However we are willing to take everyone’s opinion into consideration but the forum is about many people and the majority has to take president over the minority.
From reading the forum the issues are mainly being expressed by those on the PP thread and mostly coming from one person who is called 'Kate' .
However we accept that although there is no evidence of this she could be representing others views and therefore we will assume in our response that their are others who feel as she does.
On a personal level we accept that by her own account Kate has had an unacceptable experience of treatment and a personally horrible time herself and that the treatment she received was not adequate for her needs.
We may understand where Kate is coming from but we do not accept her statement that reading anything on here about PP or anything else has an unacceptable risk and that it:
‘may exacerbate their symptoms of pni’
The risk we do acknowledge is possible but not anymore than reading any other web site or forum on Pni or even a magazine TV or newspaper article about Pni or even going to a face to face support group for Pni; as all potentially could do the same, especially whe a woman is sensitive and vulnerable due to Pni.
We accept that some may be more vulnerable than others but this service has to be wiling to take this risk in order to help any one at all.
The alternative is to shut this service down as the risk is too great, which we do not accept.
If the forum helps a few it is worth running and the feedback has always been that it has helped many.
And we will take on board in future any points made about PP and we are happy to continue a dialogue on this.
We are also happy to let Veritee and the moderators decide how to split up the forum.
We see no reason why there can not be a PP diary section, and a query section, but for reasons Veritee will no doubt explain it is not likely we shall have a 'medical professional ' ever being wholly responsible for any particular section or have any great input into the forum itself; as the forum is part of a 'self help and service user group'
We are happy to put a warning on any section and if Kate or anyone else wishes to work with Veritee to compose such a warning we are happy with this.
But we do not feel it is appropriate for the PP section to become a 'query section' only. The whole remit of the forum is a place where women with PNI of any kind can air how their feel not to be a place of question and answer or advice.
We understand that you Kate have not had the professional help you need and seek, and we are sure Veritee and the team will be happy to work with you to help you get this as far as they are able, but for many women with PNI they have at least some adequate professional help and this forum is not intended in any way to replace this.
What this forum is intended to do is be a place when women with PNI (including PP) can air their subjective feelings about what they are suffering - so to make any section into an area where women can not talk about their feelings is not viable in any way.
The only other solution to your complaint we can offer is to delete the whole PP section altogether.
Veritee is not happy with this as she feels that now that a PP section has evolved we could learn about PP and gradually acquire the knowledge and understanding required to support women in such a section.
But the committee feel that if this section is not helpful to women with PP then the committee is of the opinion there is no point in having it and women with PP will then be welcome to seek support in the other sections along with others will all manifestations of PNI, as they have always been able to do.
However we as a committee do feel that Kate has crossed the boundaries of this forum and feel that we need to have some agreement from Kate in areas such as:
‘being non-judgemental at all times, accepting others descriptions of their own experiences as valid, participating as an equal with all others who use the forum. Respect all others contribution on the forum , respect what others opinions even though we may not agree with them , offer unconditional support to others if at all possible ( although it is understood that it when people are very ill this is not always possible) not being abusive or in any way putting anyone down on the forum,’
Having read through the threads we may understand why Kate you may have felt the need to do this.
We do understand that you were trying to make a point but there are other ways of going about this and we feel that you have upset many people and possible put the whole effectiveness of the forum in jeopardy, so we have to say this can not happen again. Our responsibility as a committee is to see that the forum continues and is helpful to as many people as possible.
This forum does not edit anyone’s posts or delete them but we rely on everyone’s good will not to contravene these basic boundaries
So we would like and undertaking from Kate and all other users that in future whatever the differences of opinion that at all times the basic philosophy and guidelines of the form will be upheld.
A non-judgemental attitude to all is maintained at all times and under all circumstances
Forum users accept that anyone’s perception of their experience is valid
We are respectful and respect ourselves and all others on the forum at all times
We do not abuse or criticise anyone personally in any way
Above all this forum is about caring for others with PNI and caring for yourselves.
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This is what the committee said, I do not agree with all of it such as deleting the PP section – but can we take this forward from here??
All the best
Veritee