EXECUTIVE SUMMARY: PUBLIC AND PATIENT GUIDE TO THE NJR S 10TH ANNUAL REPORT 2013

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EXECUTIVE SUMMARY: PUBLIC AND PATIENT GUIDE TO THE NJR S 10TH ANNUAL REPORT 2013 The National Joint Registry for England, Wales and Northern Ireland is working to improve your experience of joint

Text NJR s Patient Network Since 2011, the NJR has been working to establish and grow its NJR Patient Network a group of joint patients, pre- or post-operative, who are willing to share their experiences and views on our publications and projects. In this way, the NJR can continue to be led by the needs of patients. At the helm are two patient representatives on the NJR Steering Committee, Mary and Sue who make their introductions and welcome on this page. If you would be interested in joining this group then please email rebecca. beaumont@hqip.org.uk or call 020 7469 2546. What s inside Page 2 Welcome Page 3 NJR progress 2012/13 Pages 4 and 5 Summary of key facts about joint 2012 Page 6 Hip and knee operations: surgeon and hospital information Page 7 Hip and knee operations: what patients said Patient Network members get together to develop the Public and Patient Guide Welcome from NJR Patient Representatives Since 2003, the National Joint Registry (NJR) has made considerable progress in collecting and reporting on data and information so that the performance of implants, hospitals and surgeons can be monitored and improved for the benefit of patients, their family, friends and carers. In the NJR s 10th anniversary year, we are delighted to be growing patient involvement in the NJR s work. This includes the provision of our third edition of the Public and Patient Guide to the NJR s Annual Report (available at www.njrcentre.org.uk from October 2013). What s important to us as patient representatives and NJR Steering Committee members is improving the provision of information and materials for patients. We try to satisfy the needs of lots of different patients. Some tell us that they would like just key headlines and some ask for all of the information available to feed into their decision-making process. Either way, it s our job to help that happen. So please read on. This executive-style summary is a preview to the further detail that will be available in the forthcoming Public and Patient Guide 2013 and of course, the main report itself. If you can take additional copies for a patient forum, waiting area, family or friends then please do. With best wishes Mary Cowern Right and left knee patient including revision Sue Musson Pre-operative hip patient 2 www.njrcentre.org.uk

NJR progress 2012/13 The 2012/13 year has been a busy and exciting time for the registry, with many important goals and projects achieved. We are pleased to share some of the most recent news below New joints added Since April 2012, information on elbow and shoulder joint have been collected by the NJR. The first nine months of records are reported on in our 10th Annual Report (published September 2013). As the numbers of operations recorded in the NJR continues to grow, more detailed analysis will be carried out. Turn the page to see how many elbow and shoulder were recorded April to December 2012 Extending the benefits to Northern Ireland In February 2013, we were delighted to welcome Northern Ireland to the NJR and local teams at eight hospitals have been submitting details of since then. A total of 109 hip, knee, ankle, elbow, and shoulder were submitted between February and March 2013. Making information available to inform practice Surgeons, manufacturers and hospitals have direct access to NJR data related to their activity and products via secure websites. Further development of these systems has been undertaken to improve how they function and to ensure the data is updated on a more regular basis. One new initiative has been to look at developing a website for patients where they can access, securely, information about their and implants. The NJR Patient Network is involved in the development of this pilot project to make sure that any future system would work effectively for patients. Don t forget to read about the information available at NJR Surgeon and Hospital Profile on page 6 Carrying out and publishing research In 2012, the NJR was pleased to publish three in-depth studies on metal-on-metal hip implants, a topic of particular interest and concern for both patients and the wider orthopaedic community following media coverage about their early failure rates. The NJR s Editorial Board, which oversees the publication of the Annual Report, selects these study areas for investigation in partnership with the NJR s Research Sub-committee. Visit www.njrcentre.org.uk and click on the Public and Patient Guide 2012 to find a summary of these studies. Getting together with like-minded people from across the globe The National Joint Registry is a member of two important international groups: the International Society for Arthroplasty Registers (ISAR) and the International Society for Orthopaedic Registries (ICOR). The NJR attended a number of international meetings 2012/13 to share its best practice and learn from the experiences and data collected in other countries. In June 2013, the NJR hosted the ISAR international congress in Stratford-upon-Avon. Sharing more information Earlier this year, we were pleased to start sharing our news via social media on Facebook and Twitter. Plus, we launched our first ever ebulletin news service to keep patients and the people we work with informed of our latest developments these can always be found at www.njrcentre.org.uk. Why not find us or follow us to keep in touch? www.facebook.com/nationaljointregistry www.twitter.com/jointregistry Executive summary to the Public and Patient Guide 2013 Number of joint operations entered into the NJR April 2012 to March 2013 England 185,433 Wales 10,860 Northern Ireland 110 (Feb to March 2013 only) 3

Summary of key facts about joint 2012 Hips 60% 86,488 April 2003 Knees 7.5% 67.2 69.7 over 2011 (80,314) 57% 90,842 April 2003 Ankles 7.3% 58% 590 April 2010 68.9 69.5 over 2011 (84,653) 492 in 2011* 68.8 64.7 *Compliance is currently 77% - not all of the carried out in 2012 have been recorded in the NJR 4 www.njrcentre.org.uk JR PPG Executive SummaryJG SAVED-FINAL V2.indd 4 18/09/2013 15:28

92% 98% average BMI hip patients 28.7 = overweight average BMI knee patients 30.8 = obese Elbows April 2012 (nine months) 288 Shoulders 67% 65.6 66.9 33% inflammatory arthropathy 32% 72% 83% 13% inflammatory arthritis average BMI ankle patients 29.0 = overweight April 2012 (nine months) 2,225 68.8 73.2 61% 24% cuff tear arthropathy Executive summary to the Public and Patient Guide 2013 5

Operation Type Hip Primary Hip Revision Knee Primary Total Hip Primary (80%) Operation Subcategory - - Total knee - Procedures Recorded for this Surgeon 131 23 9 163 Hip Revision (14%) Knee Primary (6%) National Average 51 12 48 111 Hip and knee operations: Surgeon and hospital information Why not visit www. njrsurgeon hospitalprofile. org.uk to find out more. There are a set of frequently asked questions that help to explain the information in greater detail Individual results and operation information for 1,594 consultant orthopaedic surgeons carrying out joint surgery for the NHS in England has been published for the first time. This website is called NJR Surgeon and Hospital Profile and provides information about surgeons who carry out hip and knee Example practice profile pie chart for a surgeon NJR Surgeon and Hospital Profile Home Results Surgeon Profile Matthew Porteous GMC: 2744775 Hospitals in which the Surgeon has activity recorded in NJR Practice Profile Data for Period Jan 2012 - Dec 2012 Home FAQs Hip Primary (80%) s and the hospitals where those are carried out. For each surgeon listed, you will find information about their practice, including how many hip or knee they carried out in 2012 and information about mortality rates. Data for Period Jan 2012 - Dec 2012 Hip Revision (14%) Knee Primary (6%) Elaine Young, National Lead for the NJR said: In the future, this online information service will include other surgical that the registry collects ankles, elbows and shoulders. We will continue to work with surgeons and their hospitals to enhance the quality of information and in turn, develop the service for the benefit of future patients Hips - Mortality Rate Knees- Mortality Rate The work on the project, as part of NHS England s Everyone Counts transparency project, started at the beginning of 2013. This has been completed in partnership with the British Orthopaedic Association, the British Hip Society and the British Association for Surgery of the Knee. i Your surgeon might not be listed on NJR Surgeon and Hospital Profile website if they have not undertaken NHS-funded hip or knee surgery in England in 2012 as Consultant in Charge (a Consultant in Charge is responsible for the operation but may not have performed the surgery). Further information on who is included on the website can be found at www.njrsurgeonhospitalprofile.org.uk The results and analysis carried out this year should reassure patients. Hip and knee surgery has low levels of mortality and all surgeons included in the analysis had results within the expected range. Why can t I find my surgeon on the website? Remember, you can also talk to your surgeon about their experience. If you would like to ask but feel uncomfortable doing so, perhaps consider taking a friend or family member to your appointment. 6 www.njrcentre.org.uk

What patients said Looking at Patient Reported Outcome Measures (PROMs) and NJR data for the first time PROMs are a series of pre- and postoperative questionnaires that ask patients about their experience and perspective of the quality of care and treatment received in England. NJR s 10th Annual Report looks at PROMs for hip and knee joint for the first time. Headlines for hip patients* The first PROMs questionnaire (Q1) is normally sent just before the operation and the second questionnaire (Q2) about six months after the operation. The answers to the questionnaires have been collected in England since 2009. Disregarding some incomplete results, we looked at: responses from 93,881 hip patients who filled in Q1 and Q2 responses from 98,507 knee patients who filled in Q1 and Q2 Satisfaction after the operation Problems now compared to before the operation Excellent Very good Good Headlines for knee patients* Excellent Very good Good Fair Poor Satisfaction after the operation Fair Poor Much better A little better About the same Problems now compared to before the operation Much better A little better About the same A little worse Much worse A little worse Much worse If you are interested to find out more, all the scores and analysis (including how the results were analysed) using the patient questionnaires can be found in the NJR s 10th Annual Report which is available online at www. njrcentre.org.uk *Overall, patients who filled in both questionnaires tended to be healthier before surgery therefore would be less likely to have potential complications after the operation Executive summary to the Public and Patient Guide 2013 7

Have you seen: Our Public and Patient Guide to the NJR s Annual Report? Our quarterly newsletter Joint Approach? All this and more can be found online at www.njrcentre.org.uk To find out more about the NJR: Visit our website at www.njrcentre.org.uk Call the NJR helpline on 0845 345 9991 @ Send an email to enquiries@njrcentre.org.uk Write to NJR Centre, Peoplebuilding 2, Peoplebuilding Estate Maylands Avenue, Hemel Hempstead HP2 4NW National Joint Registry. September 2013