Join Our Mission to Raise Awareness about Plagiocephaly Treatment
In a recent post, we attempted to answer the question of why plagiocephaly helmets are not available on the NHS. Having explored the research published to date together with some of the many examples in the press, we were still unable to see a logical reason why parents do not have access to plagiocephaly treatment on the NHS.
NHS Advice on Plagiocephaly Treatment
Here is the advice given by the NHS website on plagiocephaly treatment:
“A helmet or headband can be used to help correct the shape of your baby’s skull, but it may not work in all cases. You should consider the inconvenience, expense and possible discomfort to your child before trying a headband or helmet.”
“Your baby’s skull should correct itself naturally over time if you take some simple measures to take pressure off the flattened part of their head and encourage them to try different positions.”
This advice appears to have been influenced by a recent study that looked at infants with mild head shape deformities. Published in the British Medical Journal (BMJ) earlier this year, the study attracted a flurry of media attention but was heavily criticised by experts in the field. Ellie Bloomer, Chair of the Craniofacial Society at the American Academy of Orthotists & Prosthetists, offers a detailed critique that highlights its fundamental flaws.
The vast majority of research suggests that plagiocephaly helmets are a safe, comfortable and effective treatment – and that in many cases, the condition cannot be corrected without one. For example, a recent study in Germany, published in the Journal of Cranio-Maxillo-Facial Surgery (July 2014), followed the treatment of infants who had moderate to severe head shaped deformities (i.e. the most severe five percent in the population). The researchers quantified treatment as well as outcome, and this was their conclusion:
“[Helmet therapy] should be the treatment of choice for moderate to severe cases. Only mild cases (modified CVAI ≤ 6.5%) can be adequately treated by conservative, i.e. non-helmet, management.”
Another recent study published in The Journal of Craniofacial Surgery (January 2014) looked at rates of parent satisfaction in relation to the treatment, and concluded that:
“More parents who used helmet therapy reported that they were satisfied with their child’s long-term head shape and would choose the same treatment again (P = 0.002) compared with those who used repositioning therapy.”
In spite of a wealth of convincing evidence, mounting pressure from the press and countless case studies, the NHS’s stance against treatment has become even firmer. Faced with this paradox, we have decided to start our own campaign, challenging the NHS to advise that cranial helmets are the standard treatment for severe plagiocephaly. Whilst we recognise that the NHS has difficulties with funding, we believe that this should not prevent them from providing parents with clinically sound advice.
Our Mission to Get Plagiocephaly Treatment on the NHS
We are extremely grateful to all parents for helping us to spread the word, and ask that you continue to rally together to help end the NHS’s stigma against plagiocephaly treatment. Children who are not treated face living with a permanent deformity that could otherwise have been corrected, and we regularly receive calls from the parents of children and young adults asking if we can help them. Unfortunately, we can’t. The only option in these cases is open skull surgery.
There is immense strength in numbers, and the positive stories that you kindly share with us on Facebook and Twitter are a heartfelt testament to the importance of this cause. So keep sharing your experiences with other parents, and if you haven’t signed the e-petition yet, please do so.
Let’s not stop pushing until all the parents who need it have access to plagiocephaly treatment on the NHS, or at the very least, sound, clinically based information on the options that are available to them.
In the meantime, if you have a baby with severe plagiocephaly, Technology in Motion can help. Our TiMband treatment is safe, pain free and highly effective, and while it might not yet be available on the NHS, there are several charities that can help you raise the funds if required. Call us on 0330 100 1800 and we will arrange an appointment at your nearest clinic.