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!!!

I used repositioning, a sleep curve mattress in the cot (controversial) and a goigoi (name changed now) pillow every other time my Ds lay down in pram, on floor etc. All that did improve his head shape but it is not and will never be normal. If your Ds head is really bad then I'd get the helmet if you can. It's a complete myth that this always corrects itself and I wish I'd never listened. Good luck with the fund raising.

My DD had severe plagiocephaly as a result of a torticollis and brachial plexus injury (nerves to arm didn't work very well due to difficult delivery). We had physio for the torticolis and arm and used repositioning for her head shape.

She's now 3 and her head shape is pretty much normal. There is still a slight asymmetry at the back but no one else would know and it's total undetectable with a full head of hair.

Breast reductions should be available on the nhs. I have large ish breasts and have back and shoulder problems as a result. I can fully see the need for a reduction for those with very large breasts. It will surely save the nhs money in the long run?

As with anything like this it has to be taken on a case by case basis but as long as it isn't purely cosmetic then I am all for them doing it.

Our PCT doesn't do breast reductions.

To fit the NHS guidelines you have to be suffering physical problems with them - back, shoulder pain and lose three stone in weight with no reduction in breast size - even if you do that round here you still have to go private. I am H and have a fiend with J breasts who found al this out when referred to a consultant - they do come with issues that large.

I am surprised anywhere on the NHS does breast enlargement operations. Are you sure you are not quoting breast reconstruction surgery figures - for woman who had to undergo mastectomies?

Used the goigoi for slight flattering of youngest and she now has a completely normal head shape now. Can see severe Plagiocephaly is different - hope you get it sorted.

YANBU to be upset, but you can scrub the sex change bit off your list. People don't just randomly decide to change sex, it is a very serious problem.

Hope you get it sorted though :)

Morning all!

Look I'm not trying to criticise the people that have these procedures it is making me angry that PCT's do have these guidelines for certain cosmetic procedures yet have no guidelines for treatment of plagiocephaly in the mildest case they say give it time and in the most severe cases they say give it time!

I have had a blanket NO from my PCT about this and I was just voicing my frustration that other procedures are considered

Hi, sorry you're going through all this stress on top of aprem baby and reflux. I know reflux on it's own can be hell. DD is 14m and still suffers terribly.
Have you tried an AR sleep wedge. That gave DD the support and positioning she needed to be comfortable, but she wasn't reliant on being on one side. For us the elevated angle made all the differnce, and taking the pressure of your baby's head on one side could make a dramatic differnce at this age.

Actually boobs aren't always different. Women with boobs much bigger than their frame will suffer back problems. A boob reduction would be considered a cheaper option than dealing with spinal problems later on. And reconstructive surgery post mastitis would be included in those figures.

Just because one woman conned the NHS on her feet doesn't mean it was widespread. I would hope after the Mirror article she would be sent the bill though.

Also what meds has he been given for the reflux. If he's excessively sick, ask for a prescription of domperidone. It speeds up gastric emptying and food motility, helped my DD when she was sick all the time. The physical sickness should dissapate by about 8m, as should most of the acid pain in a majority of cases. (Just not DD's. )

He's been on medication for his reflux more or
Less since birth best results we have had is a combination of infant gaviscon an SMA staydown formula

Like I said I understand my initial post sounds like a freaky neurotic mother!!

It just foes upset me that other procedures are considered by pct's and not this one

If you think sex change is a 'cosmetic procedure' should you be nursing?

Sounds like you need to readdress the reflux issues as well. TBH gaviscon does nothing more than thicken the milk and leave a layer at the top. Have you considered a cows milk protein intollerance? Definitely look at the AR wedge too, there is so much more could be done to alleiviate the reflux problems without having to position his head to the side all the time. Ask for a paeds referal if needs be. Does he get a lot of acid pain, or is he just a happy chucker? I've had one of each, i know that both are a nightmare in their own way.

Follyfoot - seriously you are because of my ranting going to question if I should be a nurse!!! Gender reassignment surgery is classed as a cosmetic surgery within a surgical setting It is the correction and manipulation
Of tissue to abtain a normal or better result or the patient.

I hav not once criticised anybody having these procedures ( apart from foot women) I am criticising the PCT fo not considering treatment for my son!

As a nurse I would fight for treatment for my patients as I do my family!

Fiveisanawfulybignumber- baby is just a happy chucker!!! He started while in special care and just continued!! He has become a lot better and I do hope he grows out of the reflux soon!!!

Pleased for you that he doesn't have all the acid pain as well, it literally breaks your heart to have a baby screaming in pain, and you can do nothing to soothe them.
I agree the PCT are v frustrating, they don't seem to look at the bigger picture.
A very close friend of mine lost her not quite 2 year old daughter due to medical negligence, she was much longed for and loved, parents had fertility issues. PCT have refused her IVF as she's had a baby already, even though they cannot concieve naturaly anymore (medically confirmed), and no longer have their darling baby girl. Whilst another baby could never replace her daughter, it would give her something to live for, and some possible future joy in their very sad lives.

Isnt the problem here that the treatment might be ineffective? I agree with Alibaba, all the doctors that I know think that these helmets are a rip-off.

PCTs are underfunded and also have to follow NICE guidelines and make best use of the money they have. My PCT won't pay for my specialist dentistry because they don't have funding for it from central government - so I have to fund it myself to the tune of £2000 or my teeth will die and fall out (or my jaw could get infected and fall off).

BUT - and I didn't realise this until recently - many specialist procedures have insufficient evidence for NICE to recommend them. Therefore, if a condition can be treated by other means, which may not require the specialist surgery, then they want you to opt for that. This is because the specialist surgery may not be effective enough for a reasonable cost-benefit analysis.

So, think about it, if you were in charge of limited finances, and some operations were required, and some could be avoided, wouldn't you want patients to explore the other options before stumping up the cash for an expensive specialist op that may or may not work/be needed?

It is a pisser, and where I am getting £2k from for my teeth I don't know, but I do see their reasoning. It sounds like there are other, cheaper, less invasive options for your baby's condition, so I see why they may say what they said.

yes the helmets DO work, but so does repositioning, and that doesn't cost £2000. when did you last see a grown adult walking around with a misshapen head?? it ALWAYS corrects itself in time.

Until you have suffered from crippling back pain and spinal problems due to breasts that are too large for you frame (I'm a 32L) don't you dare call breast reduction surgery cosmetic.

The simple fact is there is not enough evidence that these helmets work. I have 2 friends who had had sons with this problem. One used the helmet, one used a pillow and repositioning. You cannot tell the difference except one friend is 2k down.

I do understand the constraints placed on the PCT and the lack of govermmt funds I'm so sorry about you own PCT not taking more consideration in to your needs it's shocking they will not pay especially with the problem it could cause further problems and serious jaw issues!!

I WILL dare call a breast reduction a cosmetic procedure as that is what the PCT's class it under!!!

I repeat I am NOT saying these operations are not needed or anything like that!! what I am saying is that when my PCT refuse treatment due to it been a cosmetic procedure In there opinion that there are plenty of other operations that are classed as cosmetic procedures that they DO pay for!!

That was my point

Thanks Stressymoo, I have bitten the bullet (pardon the pun) and booked my private consultation (which will only cost £100

The PCT is my area is cutting back funding even further for many procedures - including hare lip in babies - so I have no chance.

We are facing a health care crisis, is the problem.

Your PCT's classification system does seem a bit off though. Maybe expensive ops they don't really want to fund get classified that way so they ca justify saying no more easily.

Breast reduction is most definitely not cosmetic, nor is reconstruction following surgery. I hope my earlier post didn't suggest that I thought it was.

OP - your baby is only 4 months old, their skull will still be quite soft. Keep working onthe repositioning and you will see improvements.
Have you looked at getting an Amby nest? They are about £150 and help with reflux and flat heads.

I really am sorry if I in anyway have come across as critical about any of the procedures I have mentioned as I said before my point was that the PCT do class many procedures as cosmetic ( not that I have said I agree ) and they will provide these operations I was angry that they dismissed me in relation o my son

I did not mean to offend anyone by mentioning these operations or belittle the need for them as I do understand the pain, stress and mental and physical issues not having these procedures can cause

I thank all of you fo taking the time to reply even if to YABU me!! Lol and I thank those that have suggested other options and have given there opinions on the helmets it really has given us something to think about! And now I'm not freaking like a neurotic fruit loop so much I intend to research more and make a more informed choice!

Thanks again!