Plagio, Brachy - More Awareness and NHS Help Needed

Plagiocephaly, Brachycephaly are medical terms for mis-shapen heads on babies, now known to many parents as flat head syndrome. This can easily be treated by wearing what I call a special helmet for the growth to be redirected into the correct parts. The helmet is very light weight and shaved out inside where the head needs to grow to get a better symmetrical shape. NHS class it as cosmetic, but you can get all sorts of cosmetic surgery on the NHS, however no one will accept this is a problem in children, yes some children with flat head syndrome will grow out of it over time and given the exercise early and follow it, it can be corrected. There are many older children around you see with the flatness on their heads but I feel there is more needed to be done with the health service on this.
Speaking from personal experience, our little girl was born, natural birth but we noticed at six weeks her head shape was just not right, flat on one side, wide and her forehead slightly bulging and her ear alignment slightly out together with one flat ear, concerns were brought to many of our GP’S and health visitors but no one would accept there was a problem and advised it will grow out, checked out many searches but in the region of £3000 plus for treatment.
Anyway whilst shopping noticed two sets of parents each with a child in a special helmet that I had read about, very nervous I asked each of them if it what I thought it was and showed them my concerns, i was told me to get it checked out and you will get no help from GP’s etc. Found a clinic local to us, they scanned my daughter and she was classed a suffering from severe plagio and brachy, they gave me all the figures of her head measurements and told me if we wanted to achieve good results we need to put our plan into action as soon as possible, she was now at 9 months old. Treatment started two weeks later and at a cost of £1850.00 to us, she completed her treatment at the age of 2 with fantastic results. As she was slow growing, very petite little girl, there is very little flattening left but nothing anyone will notice. During treatment our local newspaper carried a story, also we were on the local news all to bring awareness for other parents not to suffer and banging their head against a brick wall, this should not have to happen, the NHS needs to bring awareness to everyone.
Parents of children with plagio and brachy are not aware that there is help out there, the NHS class this treatment as cosmetic. There are a few hospitals now that will treat your child after a referral from your doctor, but the lists are long and by the time you get seen your child may have missed their chance for treatment. My argument is mother intuition is always right you know there is a problem and wish for someone to help you. It turned out my daughter probably had tightening of the neck muscles (torticollis) at birth and may be a factor in her plagio. There are many forums available for anyone to obtain advice, from other mums including http://www.plagiocephalycare.org, http://health.groups.yahoo.com/group/AllAboutPlagiocephaly The one I was joined too is no longer running PlagioUK - MSN whenever you need advice pop onto the forums, there will always be someone there to help you. If caught early some children can be treated and a helmet may never be needed. You are given every sort of leaflet when you have your baby on all different things I feel there should be one on Plagio to bring awareness, the only advice I can give if you feel your child has flat head syndrome -please seek advice, many of the clinics will see you and give you advice and the first consultation is free so you have nothing to lose. Many parents have had to have fund raising events to raise the money for their child. I feel you shouldn’t have to do this, you pay your taxes and national insurance and I personally feel should be taken out of the NHS funds.