Shall we Campaign?

[Veritee]

Dear All

It seems to me that over the last few months we have had a lot of posts on this site about the inadequacies of what is available for women with PNI and how individual women would like to do something to change this

ie few Mother and Baby units ( certainly not one in every Trust area), lack of specialised post natal units -perinatal may be the word? With a team approach consisting of psychiatrists, psychologists, counsellors CPN all with specialised knowledge and training in PNI; The unhelpful response and lack of understanding by those that are our first port of call ie Midwives, GPs and HV; lack of emergency response or ongoing effective support for women with PNI.

A lot of these posts have been by women who want to do something - TO REALLY TRY TO MAKE A DIFFERENCE.

Anyway perhaps we can try. We are intelligent women who before PNI many had skilled jobs in the work place and many still do despite PNI -surely we can run a campaign for PNI to be recognised as a real problem for more than just a minority of women and for the right response and treatments to be put in place.

We could run a leaflet campaign (any graphic designers out there?) perhaps team up with Mind or some other organisation to get the issue recognised.
We could lobby our MPs with a standard letter and e mail – I or someone else could write such a letter and e mail and women on the site could use it to send to their MPs – anyone want to have a go at writing such a letter? - can anyone think of any thing else?

What we of course need are some rich patrons who have the money to put behind such a campaign (as I do not think it is possible to run this sort of campaign with public money and grants, so it would have to be privately funded)

There must be some women like this out there who have had PNI?
Anyway a proper campaign is probably beyond us but we could lobby. Does anyone have any other ideas?

I did think of the possibility of women starting self help groups in their area under one loose umbrella - perhaps pni.org but it could be anything – but it should be under one umbrella as there is a lot more that can be done if it is done under one name and with common aims, than if different groups are started in different areas unrelated to each other. These groups could then be used as well as support for suffering women, as a starting point to campaign in that local area for more resources, training and understanding of PNI, with a view of eventually having adequate responses in every area for women with PNI.

I know this is a lot to ask when you are ill and just need support yourself and I would not suggest it if women had not written that they felt committed to trying to change things for others.
Perhaps if we started very small with a standard agreed letter to our MPs, this could move on to something more.
What do you think?

All the best

Veritee

[nic]

Hiya Veritee

I think its a good idea to campaign. I dont know exactly what i can do to help but i am willing to lend a hand.

I have been thinking about starting a support group where i live, but i wouldnt know where to start, i know my hv would be interested in helping setting one up, but they are short staffed at the minute so she is rushed off her feet. I think once her schedule has calmed a little she will be in touch with me.

I would be willing to send a letter to my local mp, i am not very good at letter writing, but will have ago if you like.

Let me know how i can help, it will take my mind things too

Love Nic xx

[Veritee]

Hi Nic

If you are thinking of starting a group I am happy to give you all the support and advice I can. I am a qualified (if there is such a thing) group worker having run small groups and support groups for young people for many years. I also know of a few small grants for this sort of peer support which do not require you to be a registered charity.

As far as campaigning what I have learnt over the years is that there is power in numbers and on your own you do not get listened to - but as a group, especially as a national group as women who use this web site have become - you do get listened to.

Therefore what I am proposing is that we use the pni.org as an umbrella organisation for both groups and for writing to MPs etc.

I consider starting a local support group as part of a campaign to change the way PNI is dealt with nationally and locally, as if what was offered locally was adequate, it would not be necessary for mothers to start their own groups!

There are PNI support groups scattered about the country but they individually are little known about, run by many different organisations and have little influence on policy and training locally or otherwise for PNI.

So what I am proposing is that women who want or have started local PNI support groups affiliate to PNI.ORG as a PNI.ORG support group.

This means that for a start all affiliated groups will be able to keep in touch with each other as if this does happen I shall have a special area for the groups on the web page with their own forum.
Individual groups would also benefit from others experiences of starting and running groups and from the advice we can give you here from PNI.OORG experience.

Thus these groups from whatever part of the country will be able to share resources and possibly in the future, training.
Each group would be and entity in itself and therefore be able to fund raise and get grants of their own and at the same time the PNI.org will be able to look for funding to support such groups ie get grant aid to offer a start up grant to new groups and to put on training.

To affiliate with PNI.ORG each group would have to agree to have some aims and ethos in common.

Obviously these are yet to be written but for instance one of PNI.ORGs main aims and 'mission statement' is:

Pni.org is predominately an organisation run by sufferers and past suffers of PNI for sufferers and past sufferers of PNI. We aim to facilitate in any way possible support for women who are or have suffered Post Natal Illness.
Whatever our level of participation on the web site and in other areas of Pni.org we participate as equals, there are no experts, just people with experiences, knowledge and skill which we try to share.


I guess any groups affiliated to us would have to have something like this as one of its aims?

I believe that if this worked it could allow local support groups to be autonomous yet as an umbrella organisation we would together have the collective clout we need to change things for the better Nationally.

If you are thinking anyway of starting a local support group – how would you like to be the very first official PNI.ORG Group?

I am hoping that once we get one or two groups up and running other existing groups will join and we can really start to get things moving.

Then as well as supporting each other and the women in the groups supporting each other groups can also campaign locally for recognition of PNI and better treatment and responses and also join in with a national PNI campaign

What do you think – I really think this kind of collective approach will be effective where other efforts have failed!

All the best

Veritee

[Veritee]

Dear Nic

As to your group, if you have the support of local Health Visitors you are practically there!!

In this case it is almost certain that they will be willing to supply you with a room and also do some of the work of telling mothers about this group.

The main problems with starting such a group is having somewhere to meet and getting in touch with women with PNI and persuading them to come to the group.

In your case if the HVs will support you all you have to do is set a date, print some posters to put in libraries and doctors surgeries ( you may at first have to pay for these yourself and do them on your own computer) and sit in the room you have at the allotted time - and wait!

Do not worry at this stage about the content of the group or any activities, as you may find that for a couple of weeks no one or only one or two come, but if you carry on women will join I am sure and they will help you with what you do in your groups.

However in the main you will probably find you do not need a programme. The group will run itself as it will be such a relief for the participants just to be in a room with others who know what PNI feel like and not to feel judged.

Perhaps others who have already started groups like Deborah and carolgibbons see thread veritee.proboards7.com/index.cgi?board=general&action=display&n=1&thread=356
will join in this thread to help you start?

What I will say is - by all means start a group before you are full well yourself as it will be for you own support as well.

I used to think that unless you were fully well you should not take on starting a group, but I have seen it work for current sufferers to start their own support, after all this internet group was started like this and we all support each other!

I now feel that as long as you follow the guidelines below it is fine for someone with PNI to be the instigator of a group as long as you are sure it will be therapeutic for you to do so and this does not become ‘your’ group but a mutual support group.

So if you are starting it from the point of view of being a suffering woman and not yet recovered from this illness make this clear to the other group members and the HV etc so you are not expected to take on too much and group tasks are shared so you get the support you need also.

As I said I am wiling to help you every step of the way and I hope your group can be a PNI.ORG affiliated group.

All the best

Veritee

[nic]

Hiya Veritee

I think starting a group would really help me start to accept this illness and recover from it.

The hv's i know are great, they know quite abit about pni-which is lucky really.

I was think of asking them if i could run a pni group at the church hall where we have baby morning once a week? Hopefully they will say yes.

When my hv recognised i had pnd she told me to go to baby morning to get out of the house and mingle with other mums.

I did go for a while but stopped as i felt uncomfortable despite the efforts of the hvs making me welcome. I just felt really out of place-like i was weird- i would sit in the corner and not speak-too scared that the thought i was having would start to be vocalised (does that make sense)

The nature of my job means i have to move around every few years, so maybe when i leave the place i am at now i could start another group where i go next. I am sure the hvs would continue the group after i go if i help set it up.

I would love to have a chat or send a e-mail to talk further about how i can help.

Please let me know
My e-mail address is on my profile

Thanks veritee

Love Nic xx

[Lainey]

Hi Veritee/Nic

Think this idea is fantastic. I feel very strongly about supporting sufferers as having now recovered I can so totally relate to what women have to suffer and put up with i.e lack of support and understanding from the healthcare professionals.

Just a thought but how about if we tried to enrol the support of celebrity pni sufferers. It is amazing how many have suffered PNI and now seem willing to talk about it in magazines. Without sounding disrespectful to anyone on this site, a celebrity has a lot more 'clout' when it comes to making their voices heard, and may be able to promote your ideas/views Veritee via tv and radio. LK Today would be especially useful as it is soley 'women' orientated, and Lorraine Kelly is especially sympathetic to PNI (as witnessed on This Morning)

This may well be a silly idea and me just getting carried away, but seeing how passionate we all feel about this dreadful illness and how much we have been affected by it, I don't see why a fellow past celebrity sufferer would not feel the same.

Anyway really interested in this and look forward to getting our heads together and really getting to grips with making PNI a more recognised illness.

Veritee, I think you should be nominted for a 'heart of gold' or whatever they are called now!!!! If there were more people like yourself and Debs around to support women with PNI perhaps less women would have to suffer in silence for so long.

Best wishes

Love

Elaine
xxx

[Veritee]

Thank you Elaine

I think your idea of celebrities is a good one, however I do not know any and i do not know how to recruit any for the cause ( to my knowledge no celeb has been on this site or at least they have never said who they are)

If anyone has any ideas on this please let me know?

Even if we have no campaign I see no harm in getting celebrities to put their name to supporting this site – what do others think?

However while I still feel that there was nothing wrong with the idea - for those who feel they would like to and feel well enough - of having a low level campaign to bring the issue of PNI into the public arena, it has been fed back to me in an indirect way

(Please e mail me directly or post on the site if you feel something I suggest is not constructive)

that some forum users were worried by what I said or somehow felt it was not just a suggestion but something I was going to do without consultation and involve people in the forum in a campaign, unwillingly.

It was not my intention to upset anyone or ask them to do something they did not feel they could do and anyway I was only putting forward an idea, if it is not a suitable idea I would not dream of taking any action on it.
I was, as always just looking for ways to take this issue forward for the good of all and what I said was only a suggestion and I hope it goes without saying that I would not involve anyone in anything they did not want to be involved with.

I had not thought it through at all but I would not have centred any such campaign round this forum. If women had been interested I would have expected it to be a separate thing. Actually I had not thought it through at all - it was just an idea!

I think the concern raised was it was thought I was suggesting we involved women who could be very ill and who wished to remain anonymous in a campaign that could result in publicity etc.
This was not what I meant. If women know me at all they will know from this site that I have always defended people’s anonymity.

I just thought that for some who wanted to be involved a low key campaign involving the usual tried and tested and non confrontational methods of lobbying and writing to MPs with perhaps some leaflets to send to people and organisations may be a constructive use of disappointment and anger felt by some women as to the level of resources and understanding there is for PNI.

No one would be expected to be involved and if there was any worry it need not be done in the name of PNI.ORG. I did not feel any publicity that would ensue from this would be any more personal or detailed than for example the small part we had in the Observer Magazine in February this year - and I did not think this did any harm to anyone and it mentioned no names except those who wanted to be named.

Please can women on the site give some feedback on this as I has upset and concerned me that by suggesting a campaign I was construed as being insensitive and stepping out of line in some way?

Thank you

Veritee

[yorkslass]

HI

I too have been thinking of starting up a suport group but have no idea in how to do this I would be grate full in some ideas to get me going I am willing to help in anyway posssible maybe Veritee if you had any ideas i would love to here from you,


Melxx

[Calmer]

Hi Veritee & everyone

I would certainly be willing to send a letter to my MP - though im not much good at compsing letters.

I have also been pondering starting a support group in my area (nottingham) and would welcome any support/information you could offer.

Thanks - Cora x

[supernature]

I will send a letter to my MP no problem what sort of thing should I put in it?? I don't quite know what to say as I am not as affected as many others here.

Also, someone put up a post somewhere about Denise Welch (Coronation St) who has had this, if we want a celeb to promote it how about getting her involved if poss, she would most likely be more approachable having been there herself.

Jude

[monica]

It's a fantastic idea. I personally think that if I'd had proper support earlier, I would have known that what I'm suffering from was PNI, which I would have found reassuring.

There is a group in my area, which is very good (apparently), but as ever, not all HV/ midwives, doctors know about it. The CPNs who run it are run off their feet. Surely, from a financial perspective the quicker a woman gets help and learns to cope, the less resourses the NHS would need,. But I guess it doesn't work that way.

[banana]

Just wondering if this post had been abandoned or action has been taken??

Could we all maybe meet in the chat room at a convenient time and discuss this more as I feel very strongly towards this and would like the support to know how to go about doing something in my area.

Did anyone watch loose women yesterday. Denise welch was on there and I could relate to what she was sayong so much, she really does understand pni after being through it herself and I couldnt help but notice that carol mcgiffin seemed to be dismissing what she was saying, She had this look as if to say ' hypochondriac '.
They all seemed to be confusing feeling depressed with clincal depression and not understanding the difference. I think this goes to prove that PNI is not understood and people are not aware of just how bad it can be.
And something needs to be done!

Lana

[Veritee]

Hi Lana

I agree with you totally.

(I did not see lose women but I have seen other discussions where feeling a bit down or depressed is confused with clinical depression.

I would go further and say that PNI is an illness on its own which can included clinical depression and even the medical profession does not recognise it as an illness with a wide spectrum of symptoms, including physical , which it is -

and this makes it so very different from someone who is 'depressed' and maybe could be more proactive in order to get themselves out of it)

Anyway as to the 'campaign'

No this did not happen.

It might not be clear from the thread it did not happen and we never campaigned because for some reason I never did understand it was this suggestion of mine that seemed to have triggered the original rift with one of my moderators Deborah, causing her shortly after to resign from the forum with little warning!

I doubt that this was all it was about for her, but it was this suggestion that seemed to set it off originally and while I did not understand at all what was wrong or objectionable about this suggestion, I thought it best not to pursue it in the hope it would calm down and my valued moderator would come back.

However this never happened and now in retrospect I just can not see that this would have been what it was really all about as Debs went on with Catherine and others who were using this site at the time Lainie and Sarah to found another PNI support site and forum PNISHA.

And they have spoken on this forum about campaigning too, and no one has disagreed!

This leaves me even more confused about what this rift was all about and I guess I never will understand it ie the original cause? Although I know I was so hurt that my bad reaction to Debs leaving so suddenly was why it became so blown up.

So I just dropped the Campaign thing as I just did not want to cause any more friction.

But now that is all over I really would like to do this, even if only in a small way.

I have campaigned for many things in the past on issues much less important to me than this – so I would really like to do something about this now.

Even if it gets nowhere at least I will feel we have tried.

So I suggest:

It is the run up to the election.

So cant we start by drafting a letter to send to all the major party leaders and all our current MPs saying how the predominance of PNI i.e. '1 in 10 the hidden epidemic' is completely over looked in politics’ and in the funding of research and treatment of PNI.

And as 1 in 10 women are likely to get it at any birth, it is about time this was recognises and a multidiscipline PNI response instigated in every community to start to support and treat women with PNI.

Well that’s what I would like it to say anyway.

What do people think?

Does anyone want to have a go at drafting such a letter - or perhaps several of you could write what you would want included and then send it to me to incorporate all your views and then I could send it out by e mail for members to send on to the MPs and candidates in all their areas.

This would be the most democratic way of doing it

If we were to do this it would have to be done quickly to get it in before the election.

Let me know if anyone wants to do this?

All the best

Veritee

[banana]

Hi veritee.

I would be more than willing to write up a letter, i'd do a draft copy and send it to you to check over,and obviously put a copy on here for everyone to read. Thing is im not particularly great at using big words and sounding intelligent so i can do a basic outline and then could you ( or anyone else who is willing to ) sort out any rubbish that might be in it.

Lana

[Veritee]

Thanks Lana

Yes you do this - start the ball rolling and I am sure we can all add what we would like said.

It can then be sent out by post and e mail.
Post it here when you have drafted something

As long as you are fine with others altering it and adding to it?