Talk

Advanced search

To be so ANGRY at local PCT

(68 Posts)
Stressymoo Fri 08-Jul-11 23:16:21

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!!!

MrsBonkers Fri 08-Jul-11 23:21:25

YANBU

I couldn't get any Health Visitors to even look at DD's head when I thought it was becoming mis-shapen (it seems to have sorted itself out by me moving her if I saw her laying on her favoured side.) They all just shrugged and said 'yes, it happens now, but its cosmetic.'

BTW There is a charity that can help with the cost of helmets. Can't remember the name off the top of my head, but sure you can google it.

PetronusOfSteel Fri 08-Jul-11 23:24:56

No YANBU, I don't consider it to just be a cosmetic issue as it can be very uncomfortable for the babies involved as they can't roll/ have to lie in certain positions if it's severe.

I hope the treatment works well for your DS, sorry you have to pay so much for it but it should be effective quite quickly given how young he is. Round here the NHS will pay but they make people wait months so problems get more severe/ treatment takes longer.

OpusProSerenus Fri 08-Jul-11 23:25:32

I'm so sorry you're going through this and can understand your frustration although I don't think all the ops you mention at the end generally get funding.

Are you sure of the price? I have read in our local paper recently of a child with this same disorder whose parents were raising the £500 needed for a helmet. I realise they might vary but there is a big difference between 500 and 2.5k.

catsareevil Fri 08-Jul-11 23:27:33

Do you know that your PCT pays for all the procedures mentioned?

Is there good evidence that the helmets make a difference to the final shape of the childs head? I know that most people with children with this and who dont have the helmets do say that their childs head changes shape as they grow. If the helmets dont make a difference maybe that is why they wont fund it?

Stressymoo Fri 08-Jul-11 23:29:16

Thank you I have found the charity it's called headstart4babies but they raise awareness I don't think thy can help
With the costs.

We have tried all the repositioning techniques but it has not made a difference

The helmet treatment is our last option and we will be using every spare penny we have plus begging family we are also thinking for fund raising somehow?? It complicated as our son is at the best age for treatment and we do not have the luxury to wait long before starting treatment so do not have long enough to save everything ourselves!!!

LineRunner Fri 08-Jul-11 23:31:04

OP, forget what other people and conditions get funded.

Focus on your DC and this specific condition and his clinical needs. Your PCT may well 'Not Normally Fund' the treatment your son needs, but your GP could nevertheless make a referral and s/he or the local authority identify a lead professional for you to explore third sector funding.

If you have a decent hard-working MP, a letter from them can only help.

I thought those helmets were just a con and that the flatness will sort itself out once the baby spends more time sitting up over a couple of months?

youarekidding Fri 08-Jul-11 23:34:27

YANBU. Nothing much more to add.

I agree with looking for charity for support. I have a list at work of charities which provide funding for medical treatment. I'll look Monday and link you to any that may be able to help.

PetronusOfSteel Fri 08-Jul-11 23:36:01

Please don't panic, your DS might be the best age for treatment but it is still effective for older children, it just takes longer to work.

follyfoot Fri 08-Jul-11 23:36:30

YANBU for wanting the treatment for your son, but YABU to suggest that the treatments you list are offered on the NHS.

PaisleyLeaf Fri 08-Jul-11 23:36:49

Don't give up on the repositioning techniques - he's only 4 months old. these sort of things are ongoing.

Shakirasma Fri 08-Jul-11 23:37:56

Have you been told he needs a helmet. He seems awfully young for that to be confirmed. Once babies start sitting up for longer periods of time then the problem usually resolves itself.

Would it not be wise to wait a few months before you consider making this expensive purchase? Or have you been told otherwise?

Stressymoo Fri 08-Jul-11 23:39:19

I've checked the 2 clinics closest to us In Leeds and they quote £1950 for the measurement and helmet but warn that extra service or consultations could increase the price I was I formed a minimum of £1950 to a maximum of £2500!!

As for knowing if my PCT funds the opertations mentioned I'm a nurse in general theatres at the moment and have seen and heard about a fair few of these operations and treatments over the past 8 years

About the research in helmet use it us part of the problem that the NHS will not fund research in to this treatment In many countries this is te standard treatment but not in the uk

I have 2 older sons who both had a bit of a flat bit on there heads as babies and did just grow out of it but there's was no were near as bad as the baby's it is very severe. And I am willing to do anything to help my child I just wish the NHS was too

MorticiaAddams Fri 08-Jul-11 23:44:43

You haven't mentioned any health risks so I am presuming it is cosmetic and therefore yabu. I also don't agree with any of the other cosmetic surgeries you've listed being on the NHS either.

mercibucket Fri 08-Jul-11 23:44:45

at those prices I'd be carefully checking the studies that prove the product works, tbh, a v quick google found this for example
www.ncbi.nlm.nih.gov/pubmed/18355338

Stressymoo Fri 08-Jul-11 23:48:19

I am only going on DR's advice that our baby's condition is severe enough to warrant a helmet but even our dr did not know too
Much about it!

We do not want to waste or spend a huge amount of money on a fad or gimmick but we are just willing to do anything for our baby

I will be continuing with the repositioning and do most of the time try not to have his head resting on anything we carry him and give him lots of tummy time

But the dr believes while we may get some improvement his level of deformation between the left and right side of his head is now too great to return to normal without further intervention

Shakirasma Fri 08-Jul-11 23:52:41

Bless him x I have nothing more constructive to add, other than if they believe it is purely a cosmetic issue the at least that means it will not impede his brain growth and development.

follyfoot Fri 08-Jul-11 23:53:10

They'd just about packed up doing cosmetic breast enhancement when I left theatres and that was a number of years ago. They hardly ever do a purely cosmetic rhinoplasty on the NHS or surgery simply to enable women to wear high heels. Sex changes should be funded on the NHS, the distress suffered by those with transgender issues is immense, and weight loss surgery is cost effective aside from anything else.

Like I said though, I have every sympathy with your childs condition.

griphook Fri 08-Jul-11 23:53:14

hi,

My little ds had really bad flat head on the side to the point where it was not round in any shape of form but diagonal and flat like a triangle on one side, felt really sorry for him, it was caused by him only laying on one side,I would try to turn him but he would cry and turn back. we think due to muscles and joints being tight, but we brought him a little red flat head pillow from internet with a hole in the middle (only mean't to use up to four months) although we used for longer if we were awake and in the room, but that really really helped and we used to place him on his tummy all the time, (he lean't to roll early due to this) or would be in his chair, although if flat head is at the back this can make it worse. Additionally I would turn his head in his sleep a few times a night and put him down at different end .o try to get him to lie on the other side, when he got to six months old, it was alot easier and we brought him a jumperoo so he could spend more time upright. After a few months of this it did start to right itself and now at 15 months I now it's still not 100% round but no one else would iyswim.

NerfHerder Fri 08-Jul-11 23:58:52

I have had 2 children with plagio (yeah- terrible mother I know), 1 was corrected by helmet treatment, 1 was corrected by repositioning. I do think it is entirely down to your baby (ie is he wriggly, biddable etc) as to whether repositioning works, but 4 months is a good age to give it a go for longer- helmet treatment doesn't usually start until 5.5/6 mo anyway.

mercibucket Fri 08-Jul-11 23:59:38

if a paediatrician recommends it, I guess that is quite a good recommendation but I would honestly be very wary - there are a lot of quacks out there who are more than happy to exploit worried parents who would, of course, do anything for their child, but end up lining the pockets of the cynical sad - do check out all the stats first - your paed should be able to link you to some articles at least

NerfHerder Sat 09-Jul-11 00:03:30

Has he been checked for torticollis btw? Because your GP can give you some physio exercises to do each nappy change which can help sort that out- no point in sorting his head, if his neck isn't right.

Stressymoo Sat 09-Jul-11 00:11:30

We are awaiting a review next friday about his neck and possible torticollis he at 4 months does not have very good head control and does tend to drop to one side seem to be weighed down by the heavy side of his head

Stressymoo Sat 09-Jul-11 00:26:57

Thank you all so much for taking the time to reply to me! Going to have to sleep now! As I'm becoming Insane thinking about this situation and what we should do!

Just wanted to show some Examples of cosmetic NHS treatment that I mentioned I know a few have said they are not on the NHS but they do happen and I just wanted to show that!

Boobs

Staff at Swansea’s Abertawe Bro Morgannwg Health Board, 
In the 2008 - 2010 two-year period, 777 women have had their breasts enlarged, reduced or lifted on the Welsh NHS.

Sex change

Sex changes on the NHS, which cost around £10,000 each, became a right in 1999 after the Appeal Court recognised that those who believed they were born into the wrong body were suffering from a legitimate illness.
http://www.telegraph.co.uk/health/healthnews/7613567/Number-of-NHS-sex-change-operations-triples.html

Weight
Funding for gastric banding varies across the country depending on your local PCT. PCTs can only set aside a certain amount of money for this type of surgery, up until the end of the financial year (April). If you are recommended for surgery, as a treatment for obesity, you'll be considered on a case-by-case basis. Gastric banding usually costs around £7,000 
Www.NHSchoices.com

Foot
As for the shoe women I can not find the article but it was back
In January as I remember is talking about it at work she lied her way in to having a cosmetic foot procedure and then sold her story to the mirror saying how she lied just to wear high heels!!

Nose jobs

I work In theatres and I specialise in ENT which means I have scrubbed In to a fair few nose procedures! Most I admit are performed due to breathing issues but I do know that some are just cosmetic.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now