United Brachial Plexus Network, Inc.

Rich
glad you found this!
in England, Northern Ireland and Wales there are no statistics kept on behalf of the Government of the incidence rate of obpi
Our group had a campaign a few years ago to try and see if we could encourage the Government to start keeping a record.
Sadly, although some of our group members (including one of our senior members Mrs Kath Scholey - must be something to do with the name!) managed to get their Members of Parliament to ask questions in the House of Commons, the Government refused to accede to our request.
Nice to see Mrs Scholey's MP Bill Michies' question here on the board at UBPN !
thanks
Karen

the government not wanting to start keeping a record of how many injuries occur during births in England speaks volumes to me. It is happening too frequently! Glad to see someone trying to get them to admit how frequently this just does happen! Clare Newton

As you can see Clare, it was an uphill struggle with the Health minister trying to fob us off with the line that hospitals DO keep records of incidences of the injury.
They can't even agree WHAT to call the injury they refer to ERB'S PALSY - KLUMPKES PALSY AND BRACHIAL PLEXUS SURGERY
sadly it is a battle we don't seem to be able to win at present, but it's only on the back burner, we haven't abondoned the idea of lobbying them!
Karen

Karen

Its the same here too... no one is counting us here in the USA.

The director of statistics for deformities in one state told me "until you are counted, your statistics will never be lowered"... That makes sense because no one knows for sure the number of babies all over the world who are injured daily.
I think I should be counted and we don't count.

I love it, when I read that 85 to 90% resolve on there own... if no one is counting and reporting how do they know that??
So they can quote any number they want and it will just be numbers they made up without any basis in fact.

Kath

Kath,

I completely agree and have often questioned, if they aren't keeping stats then where on earth does this 90% or so % of recovery even come from (their positive thinking???). I think this very number is soooo misleading and only further contributes to problems, such as the casual attitude so many doctors have out there telling us our children will be fine and get all better. I remember meeting a pediatrician out in the community and him insisting my child would be just fine (like all the other docs kept telling me). He just finished med school, and they too had him convinced bpi kids almost always heal up just fine. I wish.....

Kath,
Could you please update us on how things are evolving with your work to get these children counted? What is the current status? How do we make it happen? More voices??? Is there a team of people working on this agenda or is it just you? Thanks for all you are doing! Please let us know how things are progressing or what future plans may be in store.

Guest Poster
I gather you are asking for a progress report. It is very difficult to give a full one on the message boards but I will try. I have written to many government agencies and posted on this matter before. Through many e-mail exchanges with government departments I have been told that each state makes it own determination ... so I guess we will have to go state by state.

I have spent many hours working on this and being transferred from department to department with each reply I was refereed back to deformity. Those dealing with deformity knew we were not covered by them ... so they sent me to another agency. I felt like a gerbil at times.
This will be a difficult task and we could use some volunteers to do more research on how to work the system. Any one who has worked with large government organizations knows how difficult it is to make changes. Anyone is free to write to the National Institute of Health or to their State Health department to see what the regulations are in their particular state. Perhaps if they are flooded with questions on statistics they will realize the need to track us.

My contacts have been with CDC - NIH and a few of the states so far.

If you would like more information or to join me as part of the team please e-mail at KathM@ubpn.org