Feasibility of Freedom of Information Requests for Amputee Epidemiology in the United Kingdom

Introduction: While each of the 44 National Health Service commissioned artificial limb clinics in the United Kingdom record information about their own prosthetic limb users, these are not collated to give a national picture of amputee epidemiology. The requirement to respond to Freedom of Information (FoI) requests within 20 working days offers another way of extracting data from all centres, and this study describes a first attempt to use this method to update national epidemiological data. Methods: Questions were sent to the FoI email addresses of all 44 centres, requesting numbers of adult unilateral below-knee amputees, adult unilateral above or through-knee amputees and child unilateral above or through-knee amputees (all of K2 level mobility), numbers of people consistently using a prosthesis with a single axis myoelectric hand, and access to an occupational therapist with skills to teach someone to use a myoelectric hand. A FoI request was sent to NHS England seeking release of data that they collect every month from all the prosthetic services which they commission in England. Results: All but one of the UK centres responded, the great majority within 31 days. Incomplete results were generally due to centres finding the questions ambiguous and many did not record mobility levels consistently. While 33 centres had access to skilled occupational therapy, only 4 reported more than 10 patients who constantly used a single axis myoelectric hand. Eighteen centres were unable to provide complete data, and the remainder reported a ranges of 5 to 992 below-knee amputees, 7 to 574 adult above-knee amputees and 0 to 137 child above-knee amputees, suggesting different approaches to managing missing mobility level data. Conclusions: Freedom of Information requests are an inexpensive way of gathering data from NHS prosthetic clinics, which can identify age, sex, level of amputation but not activity levels or use of a prosthesis and hence only gives limited demographic information of the amputee cohort.