To be so ANGRY at local PCT

[Stressymoo]

My baby is 4 months old and is healthy in every way but we have been having a problem with his head shape and he has just been diagnosed with severe Plagiocephaly also known as flat head syndrome

while it is quite common now in babies due to babies now been put on there back to sleep but with our baby a combination of this his been premature and his reflux and having to position his head to the side with him been sick so much this has resulted in his head becoming severley flat on one side

I have discovered that our local PCT and infact most PCT's in the uk do not offer funding for the corrective helmet treatment for this condition! an we will now have to pay privately for this treatment costing up to £2500!!!

The reason the NHS does not pay is they class this as a cosmetic treatment!

Am I been unreasonable to think that the NHS/PCT's that pay for boob job's, sex changes, weight loss surgery, nose jobs, toe/foot work so a stupid women can wear high heels better really should be paying for
My sons and the other 1 in 30 babies who suffer from this condition in a severe forms treatment!!!

You could also try the clevamama pillow, we got one for DD as her head started flattening and it has seemed to work

Stressymoo, thank you for your post! I can see why the NHS don't fund this, as it doesn't cause any health problems and where do they draw the line between the cases that do and don't require treatment? However I do think that they should be a lot more supportive with their advice, and a lot more frank. I also wish they had made more of a mention of the condition when my baby was born as maybe we could have prevented it. I didn't even notice until my hubby pointed it out at around 2.5 months as I spent so much time looking at him face on!

Does anybody know of any websites where you can see examples of mild moderate and severe cases?
I am convinced my 6 month old has a severe case, however my health visitor didn't want to advise how bad a case it was. She gave me some handouts which about positioning which aren't much good now as my baby is very mobile.
I asked her about the helmets and she said that they don't like them as they don't allow enough air to the head (makes them hot) and as they are expensive.
She said that with his increased mobility now and by using the repositioning techniques I can expect an 85% improvement. I don't think that 85% improvement will be enough.
My baby's head is flattened on the one side, so when he lays on his back his head falls onto the flat part as I guess this is comfortable. When he is asleep I will move his head so he is laying on the other side, but when he stirs he always moves back to his flat side. He has a slight bulge on his forehead, his ear is a lot further forward, and the part where the two plates meet is quite pointed.
I'm thinking that a helmet may be the only option as repositioning might not be given enough hours to work. However if his case is not severe and once it has improved by the expected 85% it might be that his head deformity is just the same as many other children, I may feel the helmet is unnecessary in my baby's case. On the other hand if I send my baby off to school and his head is still screamingly obvious I will feel terrible for him and wish that I had gone for the helmet.
If I could see some pictures to make a comparison to I think it would help me make a decision. I feel that if I were to take him to one of these helmet places for a consultation they would tell me he needed a helmet no matter what. If there are not any pictures available does anyone know where I might be able to get some unbiased straight talking advice?

Here's a good place to start looking for info www.plagiocephalycare.org.uk/

OP i understand why you are upset and annoyed, i would be too

there is a lady on my fb (i dont know her in RL, just through a forum) whose daughter had this helmet - I remember her posting the pics. As far as I know the little girl is ok now.

Agree that the NHS waste way too much money on unnecessary treatments

It says on that site that the helmet therapy isn't used before 5 months old anyway, so it would be stupid for the NHS to fund it if it doesn't work at your baby's age! I am pretty annoyed with the supposedly non-essential examples you gave, particularly as I've just heard that a friend killed himself after struggling with gender dysphoria and depression for years, so that is a very serious matter actually and I would in fact say more so than having a flattened head unless brain development is affected. Your baby presumably isn't going to die of plagiocephaly, right?

I don't think stressymoo would deny any of the procedures mentioned to those who have a risk to health. We all know how having something "wrong" with your baby can make you upset. No intention to cause upset, these forums are meant to be for helping each other out.

Thank you mumblebum. Having looked at that website it tells me that I really should be seeking out treatment. I'm guessing from looking at those pictures that my baby has it at about 17mm.
Unfortunately the before and after pictures are not loading for me.
But I have just seen those helmets and they look a lot bigger than I was expecting! That site says there are only 3 suppliers in the country. Surely there are more? I can't remember where but I did think I had seen pictures of helmets that were much slimmer and therefore less intrusive for my baby.

It's a shame there isn't more research available where you can see all different degrees and how they have improved for both babies that have and haven't had helmets.

My hubby has a bit of a flat head, so think the soft bones must be in the genes, as my baby's head was perfect when born. Hubby's head is flat directly in the middle though so doesn't really notice. If it was too the side like my baby's then it would.

Maryz thank you for you additions to this post. I think if my baby's flatting was symmetrical then it wouldn't concern me so much. I also know a few grown ups with oddly shaped heads! However none of them have it more so on one side than the other.

What to do! It's so hard. I hate the thought of sticking a helmet on his head, but I also hate the thought of leaving it and it not getting any better! Knowing that the sooner you get it done the quicker it can be resolved puts the pressure on too.

Stressymoo, have you decided to go for the treatment? You say that it was your doctor that diagnosed it as severe, I'm now thinking I should go and see the doc too rather than messing about with the health visitors! Usually I find that the health visitors are more overcautious, but maybe with this matter they just like to give out leaflets and not much more.

On further digging that website does appear to be very pro-helmets. The negatives are not mentioned. There must be some negatives otherwise surely the health visitors and doctors would be more supportive (whilst obviously making you go private). I know it is purely cosmetic, but as someone mentioned, so are braces for your teeth!

The main negative, dizzydippy, is that you may be paying out for something you don't need as in the vast majority of cases, it will self-correct to a certain degree.

I have had two children with flat bits, my first was really pronounced with both the back and front asymmetrical (the face being affected was the clincher for us in terms of getting a helmet), the second had a flat bit but it went away with some repositioning and a special mattress and it just growing out.

Both now have lovely shaped heads, who knows if the first would have rounded out anyway, my guess off her measurements (2.3mm asymmetry, or in layman's terms, ears one more than an inch in front of the other) was not, which is why we went for the helmet.

But, although I am sympathetic as I know this is horrible, I do think you need to stop focusing on other cosmetic procedures and quibbling over those, and also calm down as you do have a few months in which to make the decision (you could wait and see if it improves by say 5/6 months). Also,check the neck muscles, as babies with really severe plagio usually have problems with their neck, my dd1 simply couldnt turn her head on one side, I never noticed:(

I didn't go for the helmet, I used repositioning. DS at 4 still has a misshapen head. It's not dreadful, it's not the first thing you notice about him, but it is there. His ears are asymmetrical, his forehead is too big, he has a flattish bit and a slight corner at the back. He finds wearing a bicycle helmet a bit uncomfortable but it's ok. I do wonder if it would have been better to have a helmet but tbh most of the time it's not something that I notice or think about at all.

You might find this useful.

adc.bmj.com/content/93/9/805.2.full?rss=1

Or this:
www.gosh.nhs.uk/gosh_families/information_sheets/plagiocephaly/plagiocephaly_families.html

Bascially there is not yet (to my knowledge) a randomised controlled trial directly comparing positional measures with helmets or other orthotic devices.

The profession as a whole remain sceptical as to the benefit of devices. There is also a lack of evidence that either significant plagiocephaly persists into adulthood or that it causes long term problems. The lack of evidence affects NHS funding (NICE won't approve anything that is not proven).

You will need some kind of athens access to read the review. I'm assuming that if you work for the NHS you will have that or access to someone who does.

I thought PCT's don't fund helmets because there is no proof that they make any difference.

I agree that cosmetic surgery shouldn't be carried out on the NHS - apart from situations such as a severe burns victim. But sex changes and weight loss surgery are not performed as cosmetic surgery.

Weight loss surgery is carried out because being very overweight is bad for people's health. NICE have looked at the evidence and has found that for very overweight people, surgery is most likely to achieve a permanent reduction in weight, and if this is achieved it will save the NHS money by reducuing weight related illnesses i.e. pay so much money for a gastric band now and save on money to deal medically with people with type 2 diabetes, heart attacks at a young age, etc.

Sex changes are not cosmetic surgery. They are a way of dealing with a severe psychological problem.

no clinical evidence that helmets make significant difference
and no doubt that is a disappointment. hope things improve for you and son

Hi Stressymoo, my son also had a misshapen head - it was much flatter on one side and he definitely favoured that side and it was very difficult to get him to turn to the other side. We were advised to position the mobile on his cot on the side he didn't usually like as he would turn towards it and to position him to look towards the other side at all times. We also tried cranial osteopathy as my mum is a HV and suspected that he might have a tight neck muscle on the side he wouldn't turn to. The osteopath thought this too and after a couple of sessions he would turn to either side. He had about 6 sessions in total and the osteopath did things to 'bring out' the other side of his head and it really did help (although my mum maintains it is because he was getting bigger and stronger and was choosing to lie on his front when he rolled etc!). i have been told that it is because babies now spend so much time on their backs asleep etc and I was told by a professional that it doesn't make much difference in terms of cot death if they sleep on their backs or fronts. I know though that I could never ever take this risk and I was very paranoid about cot death when my son was born as he was early and quite small at birth. I spoke to my gp about helmets and the osteopath and neither advised saying that the brain can be restricted in growth. Like someone else has posted, the gp also quoted a reprot done by GOSH. I don't know how true this is but we decided against it. His head is now much more symetrical and less flat - not perfect but he is only 7 and a half months and he has lots of hair now too so its hard to notice. Since my sons' problems' I have started looking at peoples' heads and so many people have heads that aren't perfectly round and my husbands certainly isnt so maybe its hereditary too. My sons face however wasn't affected by the flatness and I can understand how concerning that must be.
With regards to the NHS, I had type 1 diabetes for years and really battled to try and get an insulin pump and was refused and in the end I had to have a kidney and pancreas transplant which would have cost far far more than a pump! I guess resources are finite though. Good luck with everything and hope some of the suggestions help.

There just isn't the budget to pay for everything on the NHS, though. My grandfather started going blind and needed injections that cost 600 pounds a shot... he was rejected for it because of funding issues. By the time he managed to get the war veteran's charities to help fight for it on his behalf, he was down to 20% in one eye, blind in the other. He understood why he couldn't be treated, though. Sadly unless more money is put into the system, there will always be people losing out on needed treatment, and always lying scheming people abusing the system to get treatment that isn't medically necessary.

Hope you succeed in raising the needed funds to fix your baby.