Recorded presentation

Edmund Jessop, DM, Specialised services team, UK Department of Health, Wellington House, 133 Waterloo Road, London, SE1 8UG, United Kingdom, +44 (0)207 972 1317, edmund.jessop@doctors.org.uk

The National Health Service in England has developed mechanisms for centralising services for rare disorders. The services typically provide for catchments of between 15million and 50million total population. Examples include heart and liver transplant, treatment of chorioncarcinoma and retinoblastoma, and diagnosis of rare neuromuscular disorders.

The system is largely voluntary and developed in collaboration with leading clinicians. There are however economic incentives. Patient groups are strongly supportive of the system and patients seem to accept travel times of several hours to access centres of excellence.

Quality monitoring includes:

1. Routine outcome audit (including critical incident review); 2. International benchmarking and peer review; 3. Patient experience, including formal complaints; 4. Mapping geography equity of access.

There are however problems in capturing the data for full monitoring of these four elements. Outcomes can be difficult to define; published benchmarks may not be comparable. Confidentiality laws in England hamper data transfers.

Benefits for planners include the close monitoring of quality and managed introduction of new technology such as ventricular assist devices. Clinical staff benefit from greater clinical caseload. Patients and their families benefit from the better quality of service from staff (medical, nursing and other) with great experience of their condition.

The system works well for clearly specified, very rare disorders (e.g. chorioncarcinoma) and for discrete treatments (e.g. heart transplant). Problems arise when the disorders cannot be clearly specified (e.g. intestinal failure) and when local support services are inadequate.

Learning Objectives:

People responsible for very specialised services will
• know what benefits to expect from centralisation;
• know what pitfalls to avoid; and
• get some tips on how to centralise successfully.

Keywords: Service Delivery, Health Care Quality

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.

Recorded presentation