plagiocephaly mums pls email NHS

[Aneetta]

For Plagiocephaly Awareness Week I am starting a letters campaign to try and get the NHS to give parents more informed advice about active repositioning and helmet treatment. Please help by writing a letter to the dept of health and copying it to NHS at these addresses: www.info.doh.gov.uk/contactus.nsf/memo?openform and www.nhs.uk/aboutNHSChoices/Pages/ContactUs.aspx THANK YOU!!!

Hi! My 6.5 month old boy is beginning treatment (private) in two weeks.
He has a severe case and the hope is an 85% correction in 6 months time with the helmet.
I have to say that the NHS have been absolutely useless and we've not been offered any advice what so ever.
I am nervous but confident that treatment is the best thing we can do for our boy.

Hi! I just wanted to add a post to let you know about Plagio Awareness Week which is happening next week (hosted by PlagioCare at Ossur) in case you hadn't heard about it. The letters campaign sounds great! A lot of parents feel that they don't get enough support from the NHS so we wanted to set up an awareness week to give parents much needed info and make more people aware of the condition. On plagioawarenessweek.co.uk there is a list of 'Heads Up' venues going on next week around the country- they're free and informal with free refreshments, and there will be the opportunity to have your baby's head assessed by a specialist who will be present if you have concerns.
Just give me a shout if you'd like any more info!

My Ds had this. I will definitely help with the campaign and will write my letter tonight. As an aside, can I ask a question. What do you do if you see a baby who appears to have this condition and the mother, to your knowledge, is unaware of it. Obviously if it is a good friend or relative then the mother would be easier to approach but what if it is someone not as close. I always feel as though I should say something but then am totally aware of the potential minefield involved. Just wondered what others did.

Good luck with the campaign.

My DS physio said he had this, I never agreed, however I also never cared as insofar as he may have had this, his other problems were far more significant, damaging and worrying. This was just an irritation, and something for us to worry about which for us in the grand scheme of things, I really could have otherwise done without knowing about as it corrected once other things started to sort out.

I am not saying don't campaign about this. But do bare in mind that this is not a black and white issue and awareness is not always positive.