Visiting one of the highly specialised centres
Initial access is via a consultant clinic, whereupon a care plan and initial investigations are instituted. These are reviewed by the multidisciplinary team with regular (weekly) team meetings. The care plan is reviewed and refined as required, with sign off, and communication with the patient is facilitated by the clinical nurse specialist. Appointments for investigations, surgeries and follow ups as required are set and travel and accommodation for patients and families facilitated as required and detailed according to specific need and centre of care. Post – procedure follow up and investigation as required are by protocol and adjusted for specific need where necessary. Multi-disciplinary appointments are co-ordinated to minimise the impact of travel etc. upon the patient and family.
The craniofacial service is currently nationally designated according to the model of one service on four sites. This allows access to all craniofacial units according to patient choice :
Referral from secondary care
Referral from another tertiary provider
The transfer of patients between centres is occasionally requested, and is facilitated by the transfer of information between teams where required. Second opinion services are supported where requested by patients and families, and are sought between teams where clinical decision – making is particularly complex.
NHS Specialist Services
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 highly specialised centres.