National Data Trends

We aim to have national data for the UK ready by the Spring of 2016. Freedom of information requests will be submitted to both Clinical Commissioning Groups and to all NHS hospitals.

The data will hopefully show us:

• The number of people with cholesteatoma (adults and children), and therefore the prevalence
• The number of those people actively receiving treatment in the last year
• The number (and percentage) of all UK NHS hospitals that has access to a KTP laser
• The proportion of surgery where the patient is discharged the same day compared to an overnight stay
• The percentage of hospitals with less than five patients, and the percentage with less than twelve patients
• The percentage of ENT consultants who did less than twelve procedures in the last year
• The number of BAHA operations, and hearing bone reconstruction operations last year
• The proportion of hospitals using CT compared to MRI to diagnose cholesteatoma

Limitations of the Data

This data doesn’t show the whole picture, although it is a very good start. There are a number of limitations to this data:

• It only shows NHS hospitals and doesn’t include private practice.
• It only includes the last years worth of data.
• It doesn’t show whether the surgeon is newly qualified or has many year’s or decades of experience.
• It doesn’t show outcomes. For example, it doesn’t show when a hospital has undertaken more procedures as a result of having to repeat surgery or the extent to which side effects are experienced.
• It doesn’t take into account hospital quality, for example, the infection rates or patient experience on the ward.
• Not all hospitals and Clinical Commissioning Groups will send data, so it isn’t an absolutely complete picture.
• Only the first three procedures listed for patients were included in the data analysis, even if the patient has more than three procedures.

Setting Our Priorities

Once the data is ready and uploaded onto the website, we will launch a patient survery to gather your opinions on the trends shown. For example, if you experienced day case surgery do you think that your surgery should have been an overnight stay? If there are a number of hospitals with less than 12 patients or without use of the KTP laser, do you think that hospitals should specialise so that ENT consultants have more experience and the latest equipment, and if so how far would you be willing to travel?

The data and the patient survey will help us to decide the priority campaign areas. Our Regional Support Co-ordinators will also play a role in identifying possible campaign areas, for example, if they hear of inconsistent pathways or if they hear patient experience issues which need to be addressed.

If you have any suggestions on data that we could collect, or if you have campaign ideas, email support@ctoma.org.uk.