What services would you like to see from here?

Hi everyone,

In the climate of 'moving forward', I was wondering what services you would like to see from here?
I would be grateful for any feedback you might have about how to take this forum & all it represents, into the future.

Things I would like feedback about are things like,

Would you like this new forum to become a registered charity in its own right?

If your answer is yes, what would you like your new charity to be called?

Are there specific services you would like & what would they be?

Anything else?????!

Many Thanks
Liz

Hi
I think it would be a good idea to have this forum become a registered charity, basically because the "other" charity seems to have come to a stand still. I think that it is important that some work continues to get done towards these conditions and becoming a charity would bring all the support needed. I'm afraid I don't have any ideas for the name...
Also, I think it would be so beneficial to have the imput of doctors and midwives, if at all possible. The idea of a new pregnancy after developing any of these conditions is so dauting, and the support we can offer each other is so important, but sometimes, for all those worries thata rise when we are pregnant again, I think, would benefit from the input of a professional. I know this is more complicated, however, if possible would, in my opinion, be great.
I think a helpline is so desperately needed, since the "other" one isn't working, and it is important to be able to talk to someone.
Also, to have some consultants on board, on a basis of refereals, that can help with advice would be another service I think would be so helpful. I know I went to see a specialist consultant and it answered so many of my questions.
Thank you for this opportunity once more Liz, and whichever way you decide to take this forum I'm sure will be the right way to help and support people.

Hi there,
Thanks for the feedback!

I am still in contact with many of the Consultants so if anyone still needs a referral, please do let me know & I will let you know who would be your nearest.
I have spoken to the Trustees of the other organisation who actually asked me to consider the Experts, when talkng to you all!
I felt it would be churlish of me to knowingly not offer this service if I know it is still available, so agreed. I hope that is still okay with you too.

I would very much like to set up a proper support system like befriending & a helpline, but a lot will depend on funding (as ever!) and I am not sure where I stand with this until we, if thats what the concensus is, register with the Charities Commision. We would need trustees & volunteers too!

I do have an idea with the helpline though, but for now I cant say much. Lets just say, I am hopeful!

I have also written to a couple of paediatricians I know to ask if they would lend their support. I am waiting for replies.
My thinking here is that babies born to PE can have different difficulties due to the maternal hypertension, so a neonatologist might be able to help.
Also, the development of a prem baby will be at a differing rate to a term baby potentially. Many of a prem babies difficulties dont appear until much later along the line. This might be a place to ask a Paediatrician with an interest in Prem babies 'hidden' difficulties & development.
I am also hoping to persuade a psychologist I know to join us!

These are all just ideas - if you want them, I will continue to persue them!

Finally, I wondered about what happens to our kids?
When they grow up, our girls will be more suseptible to PE and our boys fathering a child born to PE and the anxiety they may face.
And we, as the parents are put in the position of having to watch helplessly on.

I know for most of us this is quite a few years away yet (hopefully!) but I think its worth putting in some ground work for them now.
Does anyone have any thoughts about this?

Oh so many questions!

Please do keep letting me know what you think, good or bad!
Thanks as always.
Liz

Hi Liz

I think everything you have suggested sounds really good and would benefit so many people.

I do wonder about what the future holds for Hannah when she has children, which is a long way off as she's 6 months old today! I also wonder about the link between fathers and pre-eclampsia, my family has no history of PE but my husbands mother had sever PE with him.

Thanks

Linda

Hi Linda,

Thanks for the feedback and happy 1/2 birthday to Hannah!

There was a recent study that suggested that men who had fathered a child born to PE in a previous pregnancy (in previous relationships) had an increased risk of about 1:20 of fathering another baby born to PE subsequently.

There seems to be significant risk factors for our boys, but as yet these have not really been defined which is frustrating.

Best Wishes
Liz

Hi Liz

I think that it all sounds like a fab idea ad let me know if i can help at all!!

Emma xxx

Hi Liz
I too wanted to say that all that you mentioned seems to me to be a great idea! I can't stress enough how great it is to have someone like you so commited to help us - thank you!!
I have to say it never crossed my mind that, in the future, Dylan will suffer with making a decision about having children, the fear it might happen again. Though it is a long way away, I hope I can help him then as much as possible.
I will be keeping my fingers crossed that you have the replys you want, and wanted to say that if you need my help for anything, it's there. I don't know exactly what to volunteer for, so, let me know if you need me to do anything.
xx