Maintaining Quality of Care


Why should a child with craniosynostosis be referred specifically to one of the 4 highly specialised UK designated centres for craniofacial surgery?


Craniosynostosis is a rare and complex condition requiring highly specialised surgical treatment and complex multidisciplinary care.

It is designated by the `Rare diseases` section of the Department of Health and NHS England, as one of the “highly specialised services” and so receives specific funding allocation.

The Department of Health and NHS England recommends management of craniosynostosis to be carried out in one of four major well-resourced designated centres.  These are:-

Alder Hey Children’s Craniofacial Unit (Liverpool)

Birmingham Craniofacial Unit (Birmingham)

Oxford Craniofacial Unit (Oxford)

Craniofacial Unit, Great Ormond Street Hospital (London)

Referrals can be made directly to any of the 4 highly specialised centres without the need to go via regional services for permission or funding.  Referral does not need to be restricted to the closest geographical unit.

Treatment in any one of these 4 designated units has the following advantages:-

  • Large unit patient numbers (over 1000 outpatients seen in each unit per year and over 80 major surgical cases performed in each unit per year) facilitate:
  • Development and concentration of expertise
  • Audit and review of timely assessment of treatment
  • Enhance multidisciplinary working and decision making
  • Facilitate clinical research and the assessment of new techniques
  • Allow early detection of complications leading to improved outcomes
  • Attraction of high quality, specialist trained surgeons
  • Focusing government funding into specialist units allows necessary expensive equipment purchases.
  • Patient and family involvement is more supported in dedicated services.
  • Clinical members of all 4 designated units regularly attending national and international specialist meetings thus updating expertise.
  • Each of the 4 designated units regularly give scientific presentations at specialist meetings and publish their work in international scientific journals.
  • An annual audit meeting of the 4 designated units provides an effective forum for:
  • National audit and quality improvement activity
  • Developing national protocols
  • Ensuring equality of service provision

It is important to note that there is no such thing as simple craniosynostosis and an increasing proportion of these cases are recognised to have a genetic basis.  Even non-genetic single suture craniosynostosis cases are complex.  The surgical risks are no less important in this group of children compared with genetic syndromic cases and so all children with craniosynostosis will benefit by being treated in one of the 4 designated centres where the outcome data is nationally and internationally reviewed.

The 4 designated UK units thus provide an internationally respected method of delivering craniofacial care that is the envy of the rest of the world.