Anger As Babies Are Denied £2000 Care

Mothers of infants with a disfiguring medical condition will today descend on Holyrood to condemn a decision by ministers not to make expensive treatments available on the NHS. Dozens of parents and children affected by plagiocephaly, commonly known as Flat Head Syndrome, are to urge the Scottish Executive to roll out the use of specially-moulded helmets which reshape babies’ skulls.

The condition, believed to be caused by factors such as the position an unborn child assumes in the womb and its posture during sleep, leaves youngsters’ skulls misshapen – and can lead to dental, ear and eye problems in later life.

Last year, more than 15,000 mothers from across Scotland signed a petition demanding a clinical trial and that the special hats, which cost £2000 apiece, be made freely available.

The executive, however, has informed mothers that it only intends to update information leaflets on the condition so as to raise awareness, and that it does not believe there is any scientific evidence proving the benefits of the helmets.

The Scottish Cot Death Trust also believes there is no proof that cranial remoulding therapy is worthwhile and warns that any confusion in the advice offered to parents of their children’s sleeping positions could lead to an “increased risk” to the welfare of infants.

David Steel, chief executive of NHS Quality Improvement Scotland, also recognises the “paucity of evidence” surrounding the condition, but acknowledges the need for further research on plagiocephaly. Now, some 21 adults and 16 children from across the country will be attending the Scottish Parliament’s Public Petitions Committee to hear for themselves the executive’s official statement on the issue.

Claire McCready, an Edinburgh mother who paid £2000 for a helmet for her son Robbie and has led the campaign, said yesterday: “We always knew that this would be an uphill struggle. Educating people about the condition is one thing, but we still need treatment provided on the NHS. The politicians claim plagiocephaly will resolve itself – but not all children will grow out of it and that is a massive problem.”

Great Ormond Street Children’s Hospital in London claim that about 50% of all babies under the age of one suffer from mild or severe cases. Many parents have complained that midwives, GPs and health visitors appear to be dismissing the problem in many cases, and some are ill-informed about the condition which, in the majority of cases, begins to affect babies between four to eight weeks after their birth.

Mrs McCready decided to take action last May, and handed the petition to ministers asking them to reconsider their treatment of the condition. She also set up a website to help other families. Mrs McCready said: “We collected signatures from all over the country. Some people signed up on the website and we took to the streets as well as asking people at Glasgow baby show and Livingston shopping centre to support us.

“Many people don’t know about plagiocephaly and when they ask their health visitors or GPs, they are fobbed off with some story. They all claim that it is simply a cosmetic matter and that hair growth will cover the problem.

“They are sweeping it under the carpet and we want to get people educated. Not just parents, the GPs and health visitors too. We want to see them screening babies for the condition and trailing the helmet treatment. When it’s proven successful, as it has with so many babies, they should provide it on the NHS.”

Caroline Cain’s daughter, Erinn, was nine months old when her condition was identified and spent 33 weeks wearing a hat 23 hours a day to correct the shape of her skull. Caroline, 28, of Dumfries, said she only found out about the condition after watching a documentary on television.

“The midwives and GPs we saw didn’t think there was anything to worry about. But Erinn’s head was 18mm flat. “After 18 months a baby’s head is no longer malleable, so we were fortunate to catch it when we did.”

In a letter to the committee, Lewis Macdonald, Deputy Health Minister, stressed that the executive and NHS Health Scotland intend to renew their advice to parents through leaflets, and hopefully raise awareness of the condition.

However, he states: “We hope that the actions outlined will help reduce the increase in plagiocephaly which, whilst cosmetic, we do appreciate is of real concern to the parents of children with this condition.

“However, we agree with clinicians in the NHS in Scotland that there is no current scientific evidence to support the use of helmets over less intrusive methods of prevention and treatment such as supervised tummy time’ while the baby is awake and putting the child to sleep on different sides of the head each night.”