Let's gain NHS funding for Plagiocephaly (Flat head syndrome)

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We are desperately trying to raise funds for our grandson Rudy Standen Decaux who needs a helmet to correct the flat head syndrome called Plagiocephaly, his head looks like a parallelogram. As you may be aware, this occurs when, with the advise from the healthcare profession, a baby lays on their back to prevent SIDS.  Although lying babies on their backs has reduced SIDS by more than 50% according to the world health organisation. It has increased Plagiocephaly or brachycephaly by 47%. 

There isn't enough awareness of this condition and mums like my daughter Nicole have presumed that while they are doing the right thing for their baby, they are on their own. She had tried everything advised by the specialist, but to no avail. She was eventually told by the paediatrician that she should, 'accept it and that she would love him anyway, and his hair woutld cover it'. He is now 8 mths old, and according to the specialist in Sevenoaks who deals with Plagiocephaly, Rudy hasn't got much more time to wait. 

There is a facebook page which my daughter has joined, which has over 600 parents with babies with the same problem, this condition and subsequent treatment is NOT FUNDED by the NHS, therefore babies requiring helmets are self funded at over £2000 each & the treatment for this condition is considered cosmetic.

The arguement over whether this condition is cosmetic or not is self limiting in itself. A child of 2 years will not see another child with a flat head, the child itself will not see a problem. But as time moves forward, children become more focused on self awarness and that of others. If severe conditions are not treated it is likely that in the future the child will struggle to find safety headwear which fits correctly.

To say to your child that they cannot ride a bike because they can't get a helmet to fit. Or as an adult being told that they can't access work on a construction site because hard hats dont fit, or they cant work as a policeman or firefighter, or even join the forces where headwear is mandatory.

The NHS needs to re-evalutate the issues surrounding this condition and provide adequate funding for the treatment. Every child should be able to grow up with equal opportunites, not just those who dont suffer from the condition or those that can afford the treatment.

When cosmetic operations are happening daily within the NHS for conditions that people have, which affect their every day life e.g. 

  •  breast implants if a woman's breasts are severely underdeveloped or asymmetrical, and it's clear this is causing her significant psychological distress
  • 
nose reshaping if the person has breathing problems
  • 
a tummy tuck if the person has excess fat or skin after weight loss or pregnancy
  • 
a breast reduction operation if the weight of a woman's breasts is causing her back problems

Why should this condition be any less worthy of NHS help, I do believe this should be at least partially funded, if not fully funded by the NHS. This will be a serious problem for the NHS in the future and will cause significant challenges for these children as they approach adulthood. 

According to the NHS, there isnt any clear evidence to suggest that these helmets work. They state that:-

  1. skin irritation and rashes are common
  2.  babies have to be checked every few weeks for adjustments.

Surely, these concerns should be acccepted by the parents, by opting to chose this route for their children, it is usually understood that there is an ultimate goal and small sacrifices are worth taking.

Bullying is hard for any child at school, it starts early and can continue through to the late teens. Therefore, another reason to combat the issue before it gets that far.  There have been multiple headline news reports of young children and teens commiting suicide as a result of bullying. I for one do not want my grandson to grow up being bullied for something that could so easily have been rectified, it is a risk we as a family are not willing to take. 

Please, please, please help us gain a better understanding of this condition and let us not not be told by the experts that 'it will be alright, your childs head might always be a bit flat, but you will love him/her anyway'. 

Thank you

Leanne Jenner-Decaux
thepegasus@hotmail.co.uk


Mob no : 07841114697 (please leave a msg I will not answer unknown numbers)

Rudy's campaign :-

https://www.gofundme.com/please-help-my-wibbly-wobbly-head



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