banana
Senior Member
The good days are back!!!
Posts: 361
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Post by banana on Apr 22, 2005 15:13:05 GMT
yeah thats cool, no probs.
I'll have a crack at it tonight and post what I have either tomorrow or sunday.
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banana
Senior Member
The good days are back!!!
Posts: 361
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Post by banana on Apr 24, 2005 5:57:58 GMT
im really struggling.
I wrote a 3 page letter and richard read it and said it was rubbish so now i dont know what to write. He thinks i babbled and missed out the point of the letter entirely. I didnt think it was that bad but i ripped it up and threw it in the bin in a temper all the same.
Im having a hard time trying to write the new one. Can anyone give me any pointers on what they think should be in it.
thanks
lana x
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Post by Veritee on Apr 24, 2005 8:14:01 GMT
Oh Dear Lana
I would not want this to cause anyone stress
Really your letter would have done as we could have read it took the main points and added our own.
I have difficulty with letters like this as I tend to ramble - as you will know- and I need others to pick out the main points.
Really it is you with PNI that knows and can say the issues best - and while Richard may know about writing such letter ( I do not know if he does or if he doesn’t) and probably he meant to be helpful -
but I would have been angry if this happened to me! It is your words that are needed and the words of other women that have suffered that I really feel will contain more honestly and true meaning.
There are some subjects for which I feel we really need to cut the Cr** of playing the game of writing a letter like this in the accepted manor and wording that politicians expect
and tell it how it really is - from the heart.
But this must have been upsetting for you and I did not want to caused anyone stress, so if you want another go please do and if you do not want to post it on here, e mail it to me.
But if you would rather not I am happy to draft something and post on here for others to ass to and alter. This might have wait till Tuesday - but I'll see how much time I have today - well in truth it is not a matter of time I have Campylobacter food poisoning very badly and can not stay out of the loo and with severer cramps - so really can not concentrate today.
But if you want I will as soon as I can.
But anyway what I would want to say would not be jargon, but from the heart
I'll attempt something below
Don’t worry if you do not wan to do any more.
All the best
Veritee
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Post by Veritee on Apr 24, 2005 9:05:57 GMT
The letter
Things I would want included – but others may have different ideas and could add them to this thread: Or take things off they did not want to say.
On way forward would be if we got together a basic outline and choose what bits we wanted to include individually from the issues we feet most strongly about.
Or we could have one letter coming from PNI.org and anyone who wanted to could send their own one to their local politicians covering the main points that affect them???
*******************************************************
Brief explanation of who we are and who we represent – I could do this one for PNI.org forum
Ask if they (the politician) are aware of the true numbers of women who suffer PNI ( commonly and mistakenly known as PND) ie the hidden epidemic, 1 in 10 being only the tip of the iceberg. And fro every women affected there are partners husbands, Grannies granddads, aunts and uncles, friends – who are all voters as well as children who are our future.
That this is an illness that effects all women who give birth and at any single birth regardless of race, culture, class and economic group;
And more to the point do they realise the true cost of PNI in terms of the misery that blights many families not just for months but in many cases for years?
( put a bit in here about how it is commonly understood that PNI is a self limiting ‘short’ illness of under a year, while this is true for perhaps half, yet the experience of many is that it can last for years, sometimes up to 6 and that it can leave both women and whole families with implications on their future lives. Which in turn will be costing the government ‘hidden’ revenue for many years to come. There is research to back up the long term effects on families and children)
That it also has hidden costs in terms of NHS spending as women with PNI go to their GP approximately 15 times more frequently than women without (there was some research done on this) either for themselves or with health fears for their children, millions are spent each year on prolonged Anti Depressant treatment, and disproportional demands on other service such as social services, sure start, HV, mental health teams, hospitals, extra pre school and educational services and in terms of consequent break up of families, divorce courts, support for single families – the list could go on – not to mention the huge personal cost to many women, men and children.
All these are hidden costs which are not acknowledged because neither government nor society appears to be able to acknowledge the size of this hidden epidemic.
Then a bit here about your experience that women can put in optionally ie my distress continued for over ************ etc – your own words.
We believe that rather than burying the costs and the problem, government money should be allocated for a co-ordinated support and a multidisciplinary approach in the first months after diagnosis, in every area of the country.
Bringing in the expertise of many existing groups and professionals both voluntary and statutory such as GPs, HV, SS, The Association for Post Natal Illness, counsellors and other therapeutic support, voluntary self help groups such as this one and many others both on the internet and face to face support groups, mental health teams, family centres, Home Start, could avoid this long term suffering for many.
And this multidisciplinary team should not be available based on the perceived social, cultural and ecconomic need of a given area or communitee - such as the way Sure Start money and cover is allocated - but be available in all areas according to actual need of the women and families who are actually suffering this.
In addition to the community based response, we feel that in recognition of those many women who require more intensive help there should be mother and baby units within at least 50 miles of any one family.
At present if a woman requires hospitalization specialised M&B units are so few that the majority have to go into a mainstream psychiatric hospital within days to months of the birth of a baby, be separated from all her children including the baby and if the mother is single often her children have to go into care
( I personally have supported 2 women this year in this position)
In this in this day and age I believe ( this is my stuff, one of my biggest point, this does not have to go into everyone’s letters in fact everyone can choose to add or admit anything they wish as long as the main theme is stuck to)
That to admit a woman with PNI into a unit with out her baby is nothing short of barbaric.
The statistic of those who are hospitalised in this way for PNI is also a hidden factor as in mamy cases unless it is a clear case of puerperal psychosis in the first weeks after a birth, these women are often admitted on the grounds of clinical depression, chronic anxiety and even bi- polar and schizophrenia not PNI, as it is not just the general public who is ignorant of how severe and devastating the symptoms of PNI can be, but the medical and welfare professions too.
The next government surely can not continue to ignore this issue as others have before.
The fact that Britains longest running support organisation for women with PNI ,the APNI is currently struggling for funds to keep going at all and continue their existing services which good as they are just not enough not , and the work of organisations like this one and many others or not funded at all or poorly funded. Is a sad indictment of the worth that Britain puts on the true needs of mothers?
**************************************************
This is the stuff I want to say and I know that it may be too strong for most .
Also I have presented it as worst case scenarios of PNIs effects on the family, as no one knows more than me the good job you are all doing to bring up your children unaffected by this horrible thing.
But there are huge hidden costs to PNI and at the end of the day politicians really only care about votes and money – so this is why I have presented it this way.
Let me know what you think or add your points below
Veritee
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Post by Veritee on Apr 24, 2005 12:45:07 GMT
I have just come back to this:
I have bombarded this with words myself - from my perspective of supporting women for so long and collecting all the issues in my mind.
However what is needed is what you want and need to say in your own words.
Please ignore my over wordy and intellectualised stuff and just say how you feel.
I could send something like this from my own perspective but a group letter would have to be more concise about how it feels and to the point
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rach
Full member
Posts: 145
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Post by rach on May 17, 2005 20:25:21 GMT
hi
i think you hit the nail on the head unfot in order to get the attention of mps etc you have to stress the points as you have above, it has to be strong to show our passion to get noticed, i have only just seen the thread or i would have replyed earlier, i would be more than willing to try and set up a support group as i know that in my area when ethan was 1 st born in our mum and baby group there was a few with pni but when your child reachs 1 year old you are asked to attended a toddler play group and the women were sep the toddler group was not the correct environment for support as women tended to stay in there "clicks" and not mix.
my future sister in law is a grapic designer so i will ask her about leaflets if you wish however you ladys would need to help with info as i would not know where to start i will ask in a few weeks as my brother and her are getting married on sat and are away on there honeymoon for 2 weeks after that.
my mam is also the leaders secritary in the local council and has advised that she would be willing help anyway possible.
i will also see if anyone else has contacts as my hubbys brother had contacts in the regonal tv station sometime ago.
anyway think that all this is a great idea and hope i can help.
i will need help and advise through to set up support group as really dont know where to start.
love rach
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rach
Full member
Posts: 145
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Post by rach on May 24, 2005 21:00:06 GMT
hi
thought i would let you know that i have spoken with my social worker, gps and hv who have all said that they would help get a support group of the groud here and think that its a great idea.
the social worker is getting me some info and will let me know in a couple of weeks when i see her,
i have also managed to get an address for denice welsh and will put a letter together for you to read before i send it if thats ok with everyone.
love rach
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Post by Veritee on May 25, 2005 9:22:53 GMT
Thats Great Rach
Great about Denice Welsh
I am pleased you have had such a good reaction from HV etc.
You have been much more successful in getting interest in a local support group than I have recently.
I have never had much of an interest from HV etc here. I have always had difficulty in getting support for running support groups for women with PNI in Cornwall. When I was a youth worker I used to do this work under the umbrella of youth work and run young mothers group. However the age group I was supposed to work with was only up to 21 so I used to have to 'sneak' older mums into the groups.
When I first suggested running a support group shortly after I was recovered to Social services and HV etc they seemed really opposed to it but more recently the local HV team agreed they would let me have a room to run one myself but I would have to pay for that room in the Health Center and also they would not have anything to do with it in terms of funding.
I would have to fund it somehow - and fund extras such as a creche etc - really there is basically no interest from HV or GPs I have contacted about running it themselves or even lending me any support financially or with their input .
I then tried Sure Start but my area - Helston - is not a Sure Start area as it is considered to be too economically endowed to be a sure start action area
( this is totally daft as all of Cornwall has deprivation even if hidden - Cornwall is economically one of the most depressed area in the country unless you are here to buy a nice retirement or holiday property with money you earn elsewhere. The average full time wage here is staggeringly less than £12,000 a year!!! but often people work only sesonally or PT and earn much less)
However recently I have arranged a meeting with a rural sure start who have shown some interest and their area is not Helston but touches on just outside Helston.
However again I would have to fund any such group - I do have the £3,000 some of while was applied for to start a local self help group for local mothers so I plan to use about £500.
Have you discussed funding? If they help out with a room tea, coffee and maybe a creche you can do it without ( perhaps just a £1 or £2 contribution from each woman who comes) but otherwise you may need some money from some where.
I do have a some material about running PNI groups that I have built up from my youth worker days., ie things that work and things that don't, structured exercises to look at things such as confidence, feelings & expectations about being a mother, managing anxiety etc I could send them to you if it would be helpful.
All the best
veritee
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rach
Full member
Posts: 145
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Post by rach on May 26, 2005 22:32:13 GMT
hi at present they are looking into what they can do and will get back to me howver it has been suggested that the group would run kind of like the old mum and baby group where we sit in a circle and talk whilst taking turns to watch children in the room but i guess we will need to talk more about this i will let you know when info is here and what is said and the suggestions however i have also managed to get some intrest from the local community centre organisers which will give access to newsletter and if need be possible fund raising we will see what happens but im quite excited.
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Vikki
Senior Member
E-mail Support Provider
Mum to 3 children aged 8,7 and 4. Suffered with Psychotic PNI, now thnkfully recovered.
Posts: 313
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Post by Vikki on May 31, 2005 13:14:45 GMT
I have been getting nowhere with contacting anyone, but Fern Cotton is or has been on Trevor McDonald recently talking about her struggle with PNI.
I will try again after I get the my work thing sorted
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rach
Full member
Posts: 145
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Post by rach on Jun 14, 2005 21:25:05 GMT
hi v
thought i would update you i have the hv and social worker meeting with me next week ref the support group we are going to do it in the durham area in a local health auth building therefore there will be no rent, if you have any info veritee please forward it if you think it will help.
rach
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