Toby
 
Petition

Plagio UK has launched a petition aimed at UK paediatric health professionals asking that they modify their advice so that the incidence of permanent deformational plagiocephaly in UK infants and children is minimised.


The petition has now closed - as of 31st March 2006.

The final number of signatures received was 2,127 electronically, 6,629 on paper - total 8,756 signatures.

The signatures will be delivered to Downing Street at 11.00am on Monday 3rd April 2006, and those copied on it will receive their copies during that same week.



Two press releases about the petition were issued:

- the first, launching the petition, on 5th October 2005
- the second, extending the deadline and adding NICE as a target, on 14th December 2005


OUR TARGET:

THE PRIME MINISTER: The Rt. Hon. Tony Blair, MP


COPYING:
  1. THE NATIONAL HEALTH SERVICE
    England - The Department of Health: The Secretary of State for Health, the Rt Hon Patricia Hewitt, MP; Chief Medical Officer, Sir Liam Donaldson
    Northern Ireland - Department of Health, Social Services and Public Safety: Minister for the DHSSPS, Shaun Woodward
    Scotland - Scottish Executive Health Department: Minister for Health and Community Care, Andy Kerr
    Wales - Health and Social Care Department: Minister for Health and Social Services, Dr Brian Gibbons
  2. THE NATIONAL INSTITUTE FOR CLINICAL EXCELLENCE (NICE)
    Sir Michael Rawlins, Chairman
  3. THE ROYAL COLLEGE OF PAEDIATRICS AND CHILD HEALTH
    Professor Alan Craft, President
  4. THE ROYAL COLLEGE OF GENERAL PRACTITIONERS
    Dr Roger Neighbour, President
    Dr Mayur Lakhani, Chairman
  5. FOUNDATION FOR THE STUDY OF INFANT DEATHS (FSID)
    Mike Wingfield, Chairman
  6. THE NATIONAL CHILDBIRTH TRUST
    Gillian Fletcher, President
  7. THE COMMUNITY PRACTITIONERS' AND HEALTH VISITORS' ASSOCIATION
    Karen Reay, Executive Committee Director

BACKGROUND:

Deformational plagiocephaly is an increasingly common condition in babies in the UK, whereby the head has become flattened at the back. Great Ormond Street Hospital says that some reports estimate that it affects half of all babies under one. It can be caused in the womb before birth, after birth by stiff neck muscles (torticollis), or by excessively long periods of time spent with the head resting in one position on a firm flat surface. It can be worsened if the stiff neck muscles are not treated or where a baby continually rests its head in one position whilst sleeping, in car seats, prams, Moses baskets, bouncy chairs, baby swings, and so on.

More cases of deformational plagiocephaly have been seen since the advent of the “back to sleep” campaign, where parents are advised to place their baby to sleep on its back. This advice is good and is saving lives. However, the advice is not complete and should be supplemented with recommendations that would ensure that plagiocephaly is avoided in the first place – or improved if it is already present. Simply recommending that babies be carried more, be given regular supervised “tummy time” during the day, be taken off their backs and not placed against hard surfaces continually, would dramatically reduce the incidence of deformational plagiocephaly in this country.

Where plagiocephaly is suspected or even diagnosed, many midwives, health visitors and GPs consistently advise parents that their babies’ heads will round out on their own or that future hair growth will cover the deformity. This is simply not true in many cases and is advice that is unacceptable to the majority of parents.

If there is a plagiocephaly or deformity, and the baby is under six months old, an approach called “repositioning” can be used. This is where the parents minimise the amount of time that the baby rests on the flat spot of the head. If torticollis is present, physiotherapy ensures that improved range of motion in the neck allows the baby to move to the non-flattened area.

If a baby is over six months old, or if repositioning has become impossible due to the baby’s increased mobility and strength, then cranial remoulding treatment should be considered. A custom-made helmet gently reshapes the baby’s head as it grows, giving it greater symmetry and a better shape. The baby wears the helmet for 23 hours a day, typically for around 12-16 weeks. The helmet is designed to create a pathway for the baby’s head to grow to a more symmetrical shape as it develops. It does not prevent normal growth from occurring, but simply redirects the growth to the places that need it. It fits snugly on all areas of the head except the flattened part, holding them steady and gently guiding the growth only to the flattened area.

We recognise that treatment may not be funded by the NHS, but it is the current advice - endorsed by the NHS - which is causing the greater incidence of deformity in the first place. In the long term, treating babies with deformed heads when they grow up will cost the NHS more than it would cost for the advice to be universally changed now.

SUMMARY:

In summary, this petition acknowledges that:
  • “Back to Sleep” is successfully reducing the number of babies who are dying from Sudden Infant Death Syndrome and should be continued;
  • If there is a plagiocephaly or deformity, parents should try repositioning, supervised “tummy time” and babies should be kept off the flattened part of their heads as much as possible;
  • If there is torticollis, the baby should be referred for physiotherapy so that it can be resolved; and
  • If there is no change, then the NHS should recommend that cranial remoulding treatment be considered.
WHAT WE WANT TO HAPPEN:

We, the undersigned,:
  1. Request that the NHS implements a policy requiring midwives, health visitors and GPs to carefully evaluate babies for both torticollis and cranial abnormalities, at birth and at their routine developmental checks, and: a. if plagiocephaly is present or suspected, to advise parents to try repositioning; b. if torticollis is present, refer immediately for physiotherapy; and c. if there is no change after physio and repositioning, then to recommend parents consider cranial remoulding treatment.
  2. Agree that “back to sleep” is the correct advice and should be continued, but: a. want the Foundation for the Study of Infant Deaths to supplement its current “back to sleep” advice with information about the need to reposition babies to avoid laying on one part of the head all the time, and about the importance of “tummy time” while they are awake and supervised; and b. want the NHS to require its health professionals, in particular its health visitors, who are the front line face of the National Health Service for new parents, to advise new parents to ensure that babies avoid prolonged periods with pressure on one part of the head, such as in pushchairs, prams, car seats, Moses baskets, etc., and instead are carried and given “tummy time”.
  3. Want the NHS to consider making cranial remoulding therapy available from the NHS. This should only be required for a short while; if other advice aimed at avoiding plagiocephaly is implemented, then the incidences of deformational plagiocephaly in the UK will decline dramatically.
  4. 4. Recognise that modifying a baby’s head shape has potential risks if not carried out competently and ask that proper regulation of individuals and companies undertaking cranial remoulding in the UK is established.
CLOSING DATE:
The closing date for the petition is 31st March 2006, after which it will be submitted to the petitionees.