PULMONARY REHABILITATION

SOUTH CENTRAL PULMONARY REHABILITATION SURVEY 2011 PULMONARY REHABILITATION Report on the Questionnaire Survey FINAL REPORT Karen Ashton June 2011

EXECUTIVE SUMMARY The primary purpose of the pulmonary rehabilitation survey was to increase awareness and understanding of the pattern of services across the region. This report summarises the outcome of an on-line questionnaire via Survey Monkey distributed amongst current providers and promoted amongst over 200 clinicians and commissioners. The survey intended to elicit benchmarking details of the services to inform the regional approach to support decision making amongst current and emergent commissioners about the capacity and capability of services. The response completion rate was as follows: Target group Registered Responses % All Pulmonary N = 15 n = 11 73.3 Rehabilitation Services The report has provided a largely descriptive account of the responses from a questionnaire survey. Responses to the on-line questionnaire revealed that even though good practice guidance for pulmonary rehabilitation has been published and recognised, there is considerable variation across the services that participated in most areas considered by the questionnaire (See Appendix 2), including: referral sources, eligibility, timing of access in the disease pathway, waiting times from referral to commencement, capacity, duration and setting for courses, the range and scope of staff involved in delivering the intervention Overall, the outcome has reinforced the recognition of the opportunity for improvement. To ensure people have access to clinically effective, safe and sustainable services it would be beneficial for service specifications to demonstrate consistent standards of intervention and risk management. It is therefore important that the providers grasp this opportunity to develop and improve to achieve the quality and consistency of clinical and self- management support that would improve outcomes. Discussion and debate with commissioners and clinical service providers to formulate next steps will be essential to gain their commitment and support. The Respiratory Programme Board should consider how the work plan covers standards of practice to meet clinical requirements as well as the systems and processes that must be consistently adopted to maintain standards. Having established a consensus, assessment of clinical outcomes, communication, workforce capability and capacity, as well as expectations of leadership behaviour should be incorporated into an on-going improvement programme. The development should be monitored and evaluated over time from both a commissioning and clinical quality perspective. This will ensure that the service meets the current and future needs of patients, whilst ensuring that it meets quality, productivity and prevention requirements of the local NHS and wider COPD outcomes strategy 2

CONTENTS Section Contents Page Acknowledgements 3 1. Introduction 4 2. Methodology 5 3. Sample 5 4. Ethical Considerations 5 5. Instruments 5 6. Reliability and Validity 5 7. Pilot Study 6 8. Data Collection 6 9. Data Analysis 6 10. Findings 6 9 11. Discussion 9 11 12. Conclusion and Recommendations 11 12 References 12 APPENDICES 13 22 1 SURVEY INVITE AND INSTRUMENT USED IN ON- LINE SURVEY QUESTIONNIARE 13 14 2 SUMMARY OF FINDINGS 15 22 ACKNOWLEDGEMENTS The survey has been an exercise in communication that would not have been possible without the assistance, co-operation and support of a great many people. Thanks in particular must go to Jenny Plummer, Respiratory Specialist Physiotherapist, Heatherwood and Wexham Park Hospital Foundation Trust for her leadership and co-ordination of this survey and to Dr Maxine Hardinge, South Central SHA COPD Clinical Lead, Jo Riley, Respiratory and Home Oxygen Service Lead, Community Health Oxfordshire and Sarah Kearney, BLF Specialist Nurse / Nursing Lead for the COPD Strategy, South Central SHA for their expert advice and support. Without the individual co-operation of the front line service staff whose direct contributions were the basis of the benchmarking, it could not have been completed. We are grateful for their time and contributions. 3

1. INTRODUCTION 1.1 Through a series of policy statements and initiatives, the Department of Health has clearly articulated a commitment to promote accessible, sustainable, integrated services targeted on assessed needs and delivered in a personalised manner in the appropriate care setting. The Department of Health (DH) Consultation for a Strategy for Chronic Obstructive Pulmonary Disease (COPD) (DH 2010) recognised COPD as a progressive illness and that the number of people dying as a result of COPD increased with age. Pulmonary rehabilitation programmes provide a multi-disciplinary and self-management approach to COPD treatment which is supported by a strong evidence base (Cochrane reviews, GOLD guidelines and NICE). Pulmonary rehabilitation tackles the interaction between breathlessness, reduced exercise capacity, limitation of daily activities, psychological effects and disease progression resulting in respiratory disability. It has been recognised as being effective when delivered in hospital, community and nonhealthcare locations. It s core components are individually tailored exercise programmes conducted in groups, with a range of disease education delivered over a minimum of 6 weeks Furthermore the report asserted that people with mild COPD were generally not sufficiently disabled by their condition to warrant participation in formal pulmonary rehabilitation programmes (MRC dyspnoea scale grades 1or 2) but should be advised to take routine exercise. It was also noted that formal pulmonary rehabilitation programmes were not universally available across England and were not commissioned by all Primary Care Trusts. (DH 2010) 1.2 To deliver the improvement in outcomes for respiratory services key themes are being addressed within the wider respiratory programme aimed at working with commissioners locally to: Change the way services are delivered to improve outcomes Driving down costs Ensure services are safe, sustainable and provide a positive experience to increase independence 1.3 Across the region, teams providing Pulmonary Rehabilitation make a valuable contribution to this self-management agenda through the delivery of multidisciplinary programmes of care for patients with chronic respiratory impairment that is individually tailored and designed to optimise each patient s physical and social performance and autonomy. Pulmonary rehabilitation is highlighted as an effective treatment by NICE 2010, who in addition have recommended its use in post hospital discharge COPD patients. As part of the work programme the South Central Respiratory Programme commissioned a benchmark survey of pulmonary rehabilitation services. The aim of the benchmarking was to establish a baseline for current services, to inform the regional approach to support decision making amongst current and emergent commissioners about the capacity and capability of services with the aim of supporting local improvements in the quality and consistency of services. 1.5 This report summarises the outcome of the on-line questionnaire survey distributed directly to current known services leads and more than 200 respiratory clinicians and commissioners across the region in April May 2011. Sections two to nine briefly described the elements of the methodology, and sections ten and eleven describe and discuss the findings relating to the sites that participated. Section twelve draws conclusions and makes recommendations. The appendices provide a copy of the questionnaire and the detailed findings. 4

2 METHODOLOGY 2.1 To benchmark details of the scope and range of current services it was decided that an on-line survey approach was appropriate. It was recognised that this approach would not establish causal relationships. 3. SAMPLE 3.1 The link to the on-line survey was sent to all eight known service leads across the region personally, giving a six week timescale. Details were also sent to the representatives on the South Central Respiratory Programme Board, posted on the South Central Respiratory Programme NHS Networks site, and disseminated through respiratory specialist nursing networks. In total the survey was promoted amongst a wider group of more than 200 commissioners and clinicians. 3.2 Although a total of 15 respondents registered on the on-line survey, responses were completed by 11 self-selecting participants. 4. ETHICAL CONSIDERATION 4.1 Ethical considerations protecting individual identity were addressed in several ways. Since the survey did not involve residents or students, considered vulnerable groups, there was no need to seek ethical approval. However personalised communications were used to confirm the purpose of the survey and the contribution this would make to the south central respiratory agenda. In addition key clinical, commissioning and managerial leaders were notified to encourage their support. Voluntary participation was noted although people were encouraged to have their say and contribute. 5. INSTRUMENT 5.1 There were no known ready-made tools or instruments available. The survey tool design was developed by a clinical specialist using the known evidence base, in consultation with the COPD Clinical Lead, British Lung Foundation input and contributions from two respiratory specialist nurses. The tool was designed to elicit information in a standardised way. The prototype of the tool was piloted amongst a small group of critical friends and adapted accordingly prior to wider dissemination with a six week completion timescale. The survey was advertised to the sample population and stakeholders electronically. The tool has been made available at Appendix 1. 6. RELIABILITY AND VALIDITY 6.1 The survey included quantitative and qualitative elements which explored opinions, where truth is necessarily subject-orientated and difficult to justify in terms of reliability and validity. By its nature the relatively small survey completed by a self-selecting group had low validity. Nevertheless the questionnaire tool had face validity in that the questions made sense and elicited the desired opinions and information. 6.2 It is possible that reactivity during data collection could have affected responses particularly in relation to pre-conceived opinions about adequacy of current services. It was also impossible to gauge any effect of potential suspicion about how responses might be used or indeed whether this circumstance influenced whether people participated. 5

7. PILOT STUDY 7.1 For reasons primarily associated with differences in interpretation of language and the potential for misinterpretation, a small group of people was asked to pilot the tool. Recommended adjustments were made before the tool was distributed. 8. DATA COLLECTION 8.1 Once the survey tool design was confirmed the Respiratory Specialist Physiotherapist took responsibility for uploading questions. Access details for the on-line questionnaire tool were distributed to the target population via email giving a timescale for return. The Respiratory Specialist Physiotherapist and two Respiratory Specialist Nurses involved in piloting the tool notified their clinical networks prior to the start of the survey. The South Central Respiratory Programme Board and associated NHS Network site: www.networks.nhs.uk/nhs-networks/south-central-respiratory-community-of-practice was used to alert over 200 people associated with the respiratory programme of the survey and provide links. The Respiratory Specialist Physiotherapist took responsibility for targeting service providers. The on-line data collection tool provided an easy-to-use repository for respondents to input data. 9 DATA ANALYSIS 9.1 Using the on-line survey functionality the completed questionnaires were analysed in two ways. The questionnaire responses in each section were summarised in tables. Responses were also presented as a visual graphic form so that the distribution of the response was visual, complimenting numerical data. 10 FINDINGS The major findings related to responses to closed questions. These provided data which illustrated the similarities as well as variations amongst responses. The limited extent of this survey gives some insight. A brief profile of all respondents has been presented initially, to provide a background against which findings may be viewed. 10.1 PROFILE OF RESPONDENTS A total of 15 sites commenced the survey, 11 completed all questions [N=15 Response rate 73.3%]. The respondents were self-selecting. It is possible that the incomplete information (no response) in this section may have been due to technological difficulties at the time of inputting information. Appendix 2, Figure 1 confirmed the following sites identified themselves when registering: A. Berkshire Cluster: Heatherwood and Wexham Park NHS Foundation Trust Pulmonary Rehab Wokingham (Administrator) Wokingham Pulmonary Rehab (Primary Care) Royal Berkshire NHS Foundation Trust Berkshire West Primary Care Trust B. Oxfordshire and Buckinghamshire Cluster: NHS Buckinghamshire Buckinghamshire Healthcare Oxford Health NHS Foundation Trust C. Southampton, Hampshire, Isle of Wight and Portsmouth: Solent NHS Trust (Southampton) Southampton University Hospital NHS Trust 6

Solent Healthcare (Portsmouth) Isle of Wight NHS D. Milton Keynes Milton Keynes Primary Care Trust Milton Keynes Hospital NHS Foundation Trust The survey data was submitted by a range of different professionals associated with pulmonary rehabilitation services: Figure 1: Title of person completing survey: 10.2 QUESTIONNAIRE RESPONSES The detailed responses to individual questions expressed as raw numbers is provided at Appendix 2. It should be noted that in view of the small sample these figures have not been adjusted or standardised. Since this was an exploratory survey and response rates were not 100%, judgemental comparison about responses has been avoided. 10.2.1 Responses to on-line survey Section 3 Your Programme Locality coverage: responses to question 3.1 indicated more than 35% course numbers related to Berkshire cluster, 35% to Southampton, Isle of Wight and Portsmouth areas of SHIP cluster, 14.28% to Oxfordshire and Buckinghamshire and the remaining 15% to Milton Keynes. A greater proportion of responses relate to the Thames Valley area. Setting of PR: more a third of PR programmes (38.89%) were in non-nhs settings, a third (33.33%) in hospital settings and the remaining 27.8% in community NHS settings. (Appendix 2, Figure 2) Frequency of PR courses: The majority of respondents ran stand alone programmes with only 21% running rolling programmes. The frequency of programmes per annum varied greatly with a 3-4 per annum or other being the most frequent responses. (Appendix 2, Figure 3). Programme format: more than two thirds of programmes delivered two sessions per week (Appendix 2, Figure 4) 53.8% of courses ran for six weeks, with a maximum of 8 weeks (Appendix 2, Figure 5). Group size was 9-12 people in more than half of programmes (minimum group size 1-4 people, maximum 17 people) (Appendix 2, Figure 6). 7

Programme Staffing : more than a third of courses ran with a 1:6 staff : patient ratio, the lowest staff : patient ratio was 1:8 staff : patient in one course. Appendix 2, Figure 7) a wide variation of MDT members assisted in courses, with primarily physiotherapists involved in exercise and education sessions. Nurses and therapy assistants assisted to a lesser extent. Expert patients contributed to education in two courses. Comments in this questions indicated one respondent identified the local approach to dealing with staffing constraints when the health assistant covering the respiratory clinic is on annual leave or off sick then I have only a voluntary worker to sit with me in case of an emergency. (Appendix 2, Figure 8) 10.2.2 Responses to on-line survey Section 4 Referrals and Completion Referral source: COPD/ Respiratory / Community MDT were most frequent referral sources, with GPs, Hospital Drs and practice nurses being equal next most usual referrers. Patients were noted as self-referring in 2 responses. (Appendix 2, Figure 8) Referral criteria: All courses recruited people with breathlessness level MRC levels 3 and 4, and ( courses included people with MRC level 2 breathlessness (Appendix 2, Figure 9). COPD was the predominant medical condition, followed by Bronchiectasis, with 8 (72%) or PR courses including people with Pulmonary Fibrosis. mentioned in responses.. (Appendix 2, Figure 10) Waiting times Average waiting time from referral to starting PR in 10 responses was 13.09 weeks. Appendix 2, Figure 11 All 10 responses indicated significant variation in referral activity to PR during 2010 a range from 45 to 461 people (Appendix 2, Figure 12).. One response noted the service had been available for only three months of the benchmark period. Completion of PR 10 responses in indicated a similarly wide variation in numbers commencing pulmonary rehabilitation courses, the lowest being 25 and the highest being 269. The service with the greatest number of referrals (461) had 185 people commencing. (Appendix 2, Figure 13) There was variation in the definition of course completion, a combination of attendance from 50-100% of sessions, and final outcome measures in 5 responses. Appendix 2, Figure 14 In the 11 responses indicating numbers of people completing (Appendix 2, Figure 15) there was a variation from 17 (lowest number) to 252 (highest number). One response indicated 80% completion rate. 10.2.3 Responses to on-line survey Section 5 Early Pulmonary Rehabilitation 54.5% respondents targeted patients who have had a recent hospital admission (Appendix 2, Figure 16) 1 respondent indicated their service did not have arrangements in place to target recent hospital admission, 1 response indicated the service was trying and the remainder deployed a formal referral route from a variety of sources (Appendix 2, Figure 17). For those people targeted following hospital discharge the 10 responses indicated the average waiting time before beginning a pulmonary rehabilitation course was 5.2 weeks (Appendix 2, Figure 18). This was less than half the general average waiting time. 8

10.2.4 Responses to on-line survey Section 6 Funding and Commissioning 63.6% of services had secure funding for pulmonary rehabilitation (Appendix 2, Figure 19). 45.5% of respondents stated they were involved in commissioning in their area ((Appendix 2, Figure 20). 11 DISCUSSION This on-line questionnaire survey intended to establish a baseline for current services, to inform the regional approach to support decision making amongst current and emergent commissioners about the capacity and capability of services with the aim of supporting local improvements in the quality and consistency of services. In attempting to achieve this there are a number of issues raised by the methodology used and the subject area. 11.1 ISSUES RELATED TO METHODOLOGY 11.1.1 Traditional survey studies involve taking an appropriate sample that can be used to understand and / or predict directly or indirectly the behaviour of a group (Oppenheim 1966). Findings in this survey have limitations in relation to the sample used. One area, Hampshire, which commissions services for more the 25% of the regions population did not contribute: this may be a consequence of recent development work undertaken by NHS Hampshire which completed its own review of pulmonary rehabilitation services to inform recurring investment to improve access. The associated re-procurement to a revised specification may have also had an influence on current providers participation. For all other areas outside Hampshire the overall completion rate amongst respondents (73.3%) was reasonably high. Being too small a dataset to support full statistical analysis, results are presented in a descriptive fashion. 11.1.2 In spite of attempts to eliminate bias, the self-selected nature of the survey approach and variable circumstances of respondents who registered may have influenced their ability to respond. It is impossible to gauge the extent to which any personal assumptions or work pressures prevented could have affected full involvement and participation. For example in the 40% of responses that indicated their funding was insecure and the unknown impact of the re-procurement process in NHS Hampshire. Furthermore whilst the inclusion of Milton Keynes area which transferred to East Midlands Strategic Health Authority in April 2011 provided a valuable insight into local services it is likely that the local work programme for this former part of the region will be shaped by the East Midlands approach. 11.1.3 Another possible influence to responses was the extent to which respondents interpreted the questions differently may have shaped the strength of general impressions conveyed in response. The comments boxes potentially provided an opportunity for respondents to add comments without taking any responsibility for influence they themselves may have on their services e.g. Appendix 2, Figure 10. conditions pulmonary rehabilitation is provided for ; and Appendix 2, Figure 11. average waiting time between receiving referral and patient starting course (in weeks). 11.1.4 The questionnaire tool had the potential to introduce bias of respondents because of the subjectivity as well as the unknown individual differences in access to data and information, experience, responsibility and influence of people who responded. This placed limitations on interpretation. 11.1.5 On a more positive note the descriptive data has provided very useful background data about the scope of current pulmonary rehabilitation programmes in South Central SHA that should be considered by the South Central Respiratory Programme Board in the proposed work programme. 9

11.2 ISSUES RELATING TO PULMONARY REHABILITATION. 11.2.1 The on-line questionnaire survey was viewed against the background of underpinning work in the wider South Central Respiratory Programme linked to the development of Department of Health outcomes strategy work stream for COPD. The survey intended to elicit details of existing services to inform the regional approach to support decision making amongst current and emergent commissioners about the capacity and capability of services that would make a positive impact on patient outcomes and experience. The questions elicited responses pertaining to: The programme Referral and completion Early pulmonary rehabilitation Funding and commissioning 11.2.2 Responses to the on-line questionnaire revealed that even though good practice guidance for pulmonary rehabilitation has been published and recognised, there is considerable variation across the services that participated in most areas considered including: referral sources; eligibility; timing of access in the disease pathway; waiting times; capacity; duration and setting for courses; as well as the range and scope of staff involved in delivering the intervention (See Appendix 2). There is particularly variation in the availability of courses for the numbers of people affected by Chronic Obstructive Pulmonary Disease. Taking Oxfordshire system as an example, the recorded number of pulmonary rehabilitation places is 530 per year. Known reported COPD prevalence in 2008/09 (NHS Comparators QOF reported vs expected prevalence see Figure A and Table A below) indicated a population of 7232 or a ratio of 1:14 people to places available. Estimated expected prevalence in the Oxfordshire system is 12,687 giving a ratio of 1:24 people to places available. Organisation Ratio Reported Count Pop. Berks West 0.4 4579 494964 Portsmouth City 0.43 3227 208668 Southampton City 0.5 4517 259932 Berks East 0.51 4187 415332 Hampshire 0.53 16134 1298398 Isle of Wight 0.53 2245 140741 Bucks 0.57 5386 525370 Oxfordshire 0.57 7232 675373 Total 47507 4018778 (Source NHS Comparators) Figure A 2008/09 Reported versus Expected Prevalence Table A Reported Count 2008/09 11.2.3 Although there were no specific questions relating to the skills and competencies within the teams providing services included in the on-line survey, since respondents came from current services that included staff with specialist expertise, it is apparent that the need for specialist knowledge and skills is acknowledged in these sites. 11.2.4 Of particular concern were the low numbers of patients referred, and lower numbers of patients completing PR courses in each locality when the actual and estimated prevalence of COPD is considered. This raises important issues of potential capacity and / or equality of access issues. 11.2.5 These findings echoed the National Audit for COPD Report (2008) which identified that although the number of areas offering pulmonary rehabilitation had increased, 10

the overall quality of these services was questionable, highlighting that coverage was inequitable across England, programme content varied (potentially affecting effectiveness and benefits to the individual and the system), and access often be limited by low capacity and long waiting lists. NICE 2010 recommended that in relation to duration of the initial programme.that outpatient programmes should contain a minimum of 6 weeks and a maximum of 12 weeks of physical exercise, disease education, psychological and social interventions. 11.2.6 The British Thoracic Society recommended standards of good practice in their IMPRESS guidance (2008): Standard 1 A rehabilitation programme must contain individually prescribed, physical exercise training together with lifestyle and self-management advice. Standard 2 The programme should be delivered by a multi-disciplinary team and include two supervised sessions per week for at least four weeks. Further home training should be encouraged Standard 3 Individual progress should be assessed by the use of appropriate assessment and outcome measures (usually health status and functional exercise capacity) Standard 4 There should be evidence of programme quality control and improvement. 11.2.7 As with other aspects of longer term care (Wagner E H 1998), the findings indicate there is scope for improving the consistency of care and support in pulmonary rehabilitation. This would have a known benefit in responding to the quality, productivity and prevention challenge, improving clinical outcomes for patients whilst reducing cost longer term. However, improving services will rely on the efforts of commissioners and providers alike. To support them the Respiratory Programme Board need to consider the priorities for pulmonary rehabilitation so that local services will reflect clinical guidelines and other reliable sources of evidence for assessment and intervention. If commissioners decide to introduce and evaluate new models of care they should involve all sectors and agencies, including social care, so that high-quality care that is effective, efficient and offers value for money can be put in place to meet the needs of their local populations. Good clinical leadership will also be needed to ensure uptake across care sectors and agencies, and to reduce duplication in care provision. 12 CONCLUSIONS AND RECOMMENDATIONS 12.1 Through a series of policy statements and initiatives, the Department of Health has clearly articulated a commitment to promote accessible, sustainable, integrated services targeted on assessed needs and delivered in a personalised manner in the appropriate care setting. 12.2 This report has summarised the outcome of an on-line questionnaire survey was viewed against the background of underpinning work in the wider south central respiratory programme linked to the development of Department of Health outcomes strategy work stream for COPD. The survey intended to elicit details of existing services to inform the regional approach to support decision making amongst current and emergent commissioners about the capacity and capability of services that would make a positive impact on patient outcomes and experience. The survey was promoted amongst all existing services and more than 200 clinicians and commissioners. The report has provided a largely descriptive account from a response completion rate of 73.3% amongst a self-selecting group. The findings indicated considerable variation across the services that participated in most areas considered including: referral sources; eligibility; timing of access in the disease pathway; waiting times; capacity; duration and setting for courses; as well as the range and scope of staff involved in delivering the intervention (See Appendix 2). 11

12.3 Overall, the outcome has reinforced the need for change. To ensure people have access to clinically effective, safe and sustainable services it would be beneficial for service specifications to demonstrate consistent standards of intervention and risk management. It is therefore important that the providers grasp this opportunity to develop services to achieve the quality and consistency of clinical and self- management support that would improve outcomes. 12.4 Discussion and debate with commissioners and clinical service providers to formulate next steps will be essential to gain their commitment and support. The Respiratory Programme Board should consider developing a work plan, covering standards of practice to meet clinical requirements as well as the systems and processes required to demonstrate consistently adopted standards. Having established a consensus, assessment of clinical outcomes, communication, workforce capability and capacity, as well as expectations of leadership behaviour should be incorporated into an on-going improvement programme. The development should be monitored and evaluated over time from both a commissioning and clinical outcome perspective. This will ensure that the service meets the current and future needs of patients, whilst ensuring that it meets local NHS quality, productivity and prevention requirements and wider COPD outcomes strategy expectations. References: Department of Health 2010, Strategy for Services for Chronic Obstructive Pulmonary Disease (COPD) in England, Consultation Document. DH. London. http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalass et/dh_113279.pdf Department of Health 2010, Strategy for Services for Chronic Obstructive Pulmonary Disease (COPD) in England, Consultation Impact Assessment. DH. London. http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalass et/dh_113280.pdf IMPRESS 2008, Principles, Definitions and Standards for Pulmonary Rehabilitation Published by IMPRESS following consultation with BAOT, ARNS and ACPRC. London. http://www.impressresp.com/servicedelivery/pulmonaryrehabilitation.aspx National Institute for Health and Clinical Excellence, 2010 Chronic Obstructive Pulmonary Disease: Management of Chronic Obstructive Pulmonary Disease in Adults in Primary and Secondary Care (updated), NICE. London http://www.nice.org.uk/nicemedia/live/13029/49425/49425.pdf NHS Comparators 2008/09 QOF reported PCT prevalence https://www.nhscomparators.nhs.uk/nhscomparators/commissionerresults.aspx Royal College of Physicians, 2008, National COPD Audit, RCP. London. The Joint British Thoracic Society/ Association of Chartered Physiotherapists in Respiratory Care Guidelines for the Physiotherapy Management of the Adult, Medical, Spontaneously Breathing Patient were published in the May 2009 issue of Thorax: Vol 64 http://www.britthoracic.org.uk/portals/0/clinical%20information/physiotherapy/physiotherapyguideline/physiof ullguideline.pdf Wagner EH. Chronic disease management: What will it take to improve care for chronic illness? Effective Clinical Practice. 1998;1(1):2-4.] 12

APPENDIX 1: SURVEY INVITE AND QUESTIONNAIRE South Central Respiratory Programme South Central Strategic Health Authority First Floor, Rivergate House Newbury Business Park London Road, Newbury Berkshire, RG14 2PZ 01635 275500 www.southcentral.nhs.uk The South Central respiratory programme board, which is focussed on the National COPD Strategy, are keen to find out more about the current provision of pulmonary rehabilitation in South Central. This will inform our discussions with PCT and future GP commissioners. We would be very grateful if you could complete this initial questionnaire which focuses on provision, funding and staffing. A more detailed questionnaire on programme format and patient outcomes will follow. Jenny Plummer, Respiratory physiotherapist Maxine Hardinge, COPD Lead South Central For each pulmonary rehabilitation programme you run please complete: Location: which town (s)? Setting: is this/ are these Hospital Community NHS setting Community non - NHS setting How many pulmonary rehabilitation programmes do you run on this site (s), throughout the year? 1-2 3-4 5-6 7+ Rolling Programme How many patients are referred to your pulmonary rehabilitation programme annually? What is your average waiting time between referral to and starting your pulmonary rehabilitation programme? How many patients complete your pulmonary rehabilitation programme annually? 13

Do you have NHS secure funding for your pulmonary rehabilitation programme(s)? YES NO Are you aware of any commissioning plans in your PCT to increase pulmonary rehabilitation provision? Please provide details: Where do your referrals come from? GP Hospital Drs Practice Nurses COPD/respiratory nursing teams Other % Which respiratory conditions do you provide pulmonary rehabilitation for? COPD Bronchiectasis Hyperventilation syndrome Pulmonary Fibrosis Cystic Fibrosis Other What MRC level do you accept? (tick all that apply) 1 2 3 4 5 Do you target patients who have had a recent hospital admission? Yes What is the average time from discharge to beginning pulmonary rehabilitation?.weeks 14

APPENDIX 3 SUMMARY OF FINDINGS 1. Summary of Findings The following information is the summary of responses. It should be noted that two respondents registered with the survey but did not complete any data. These responses have not been included in the summary below. 1.1 Response Rate: Target group Total Registered Total Completed % Pulmonary Rehab n = 15 n = 11 73.3% 1.2 Responses to individual questions: Your Programme Figure 1: Responses to question section 3.1: Which locality / towns does your programme cover? Table 1: Number of courses by towns / locality Locality /Town % Milton Keynes 2 14.29% Berks E 1 7.14% Berks W / Newbury / Reading / Wokingham/ 4 28.57% Oxfordshire 1 7.14% Buckinghamshire 1 7.14% Southampton 3 21.43% Portsmouth 1 7.14% IOW 1 7.14% Total 14 Response 1 Figure 2 Responses to question 3.2 What setting is your programme Table 2. Setting Count & % run in? (all courses) Course Setting Count % Hospital 6 33.33% Community NHS 5 27.78% Community non-nhs 7 38.89% Total 18 response 2 15

Figure 3 Responses to question 3.3 How many courses do you run in that Site through the year? (all courses) Table 3: Count Count. % 1-2 1 7.1% 3-4 3 21.4% 5-6 1 7.1% 7 + 1 7.1% Rolling 3 21.4% * Other (please specify) 5 35.7% response 1 *Other 3 x rolling programmes 18 in total Commissioned to see 530 patients per year across Oxfordshire Block programme Several sites Figure 4 Responses to question 3.4 How many sessions a week do people attend? (all courses) Table 4. of sessions Count % 1 4 30.8% 2 9 69.2% 3+ 0 0.00% Total 13 100.00% response 2 Figure 5 Responses to question 3.5 Duration of programme Table 5: Duration of programme: Duration % < 6 weeks 0 0.0% 6 weeks 7 53.8% 7 weeks 4 30.8% 8 weeks 2 15.4% > 8 weeks 0 0.0% Total 13 100.0% response 2 16

Figure 6 Responses to question 3.6 Numbers of people attending Table 6: Numbers attending Count % 1-4 1 7.7% 5-8 3 23.1% 9-12 8 61.5% 13-16 2 15.4% 17+ 1 7.7% response 2 Figure 7 Responses to question 3.7 Staff: Patient Ratio Table 7: Staff: Patient ratio Ratio Count % 1:2 pts 0 0.0% 1:3 pts 0 0.0% 1:4 pts 4 30.8% 1:5 pts 3 23.1% 1:6 pts 5 38.5% 1:7 pts 0 0.0% 1:8 pts 1 7.7% Comments 2* response 2 *Comments on staff : patient ratio If the health assistant covering the respiratory clinic is on annual leave or off sick then I have only a voluntary worker to sit with me in case of an emergency We aim for 10 patients with band 5 and Band 4 rehab assistant with 6 week programme but we also run a back to back 1 x week programme x 10 weeks with Band 7 Part Time and Band 6 nurse Response to Question 3.8 Table 8a: Members of the MDT that assist MDT members 2 1 3 4 5+ Response Count Physiotherapists 1 10 1 1 0 13 Nurses 1 11 1 0 0 13 Occupational Therapists 1 4 0 1 0 6 Therapy Assistants/Technicians 1 9 0 0 0 10 Talking Therapists 1 1 0 0 0 2 Doctors 0 2 1 0 0 3 Fitness Instructors 0 2 0 0 0 2 Expert Patients 0 3 0 0 0 3 Other 2 3 2 0 0 7 17

Response to Question 3.8 Table 8b: Members of the MDT that assist with activities: Assist with: Education Only Exercise Only Both Exercise and Education Response Count Physiotherapists 0 0 12 12 Nurses 7 0 5 12 Occupational Therapists 5 0 1 6 Therapy Assistants/Technicians 0 3 7 10 Talking Therapists 2 0 0 2 Doctors 3 0 0 3 Fitness Instructors 1 1 0 2 Expert Patients 3 0 0 3 Other 5 0 0 5 1.3 Responses to Individual Questions: Referrals and Completion Response to Question 4.1 Figure 8: Who refers to your service (all referrers to 11 programmes) Table 9: Who refers Who Count % GPs 10 83.3% Hospital Drs 10 83.3% Practice Nurses 10 83.3% COPD/ Respiratory/ community 11 91.7% MDT teams Community Matrons 8 66.7% Patients selfrefer 2 16.7% Other 0 0.0% Response 3 Response to Question 4.2 Figure 9: What MRC levels do You accept (all that apply) Table 10: MRC levels MRC Count % 1 3 25.0% 2 9 75.0% 3 12 100.0% 4 12 100.0% 5 8 66.7% response 3 18

Response to Question 4.3 Figure 10: What Respiratory Conditions do you provide pulmonary rehabilitation for? Table 11: What conditions Condition Count % COPD 12 100.0% Bronchiectasis 11 91.7% Hyperventilation Syndrome 3 25.0% Pulmonary Fibrosis 9 75.0% Cystic Fibrosis 1 8.3% Other 4 33.3% Response 3 Comments Please comment on proportions i.e. 50% COPD 50% Bronchiectasis 2% fibrosis 80% COPD 17% bronchiectasis 1% other COPD 75 Bronchiectasis 10 Asthma 5 Pulmonary Fibrosis 8 Hyperventilation 1 CF 1 70% COPD 10% Bronchiectasis 20% Asthma If COPD patients also have bronchiectasis then we accept - but not pure Bronchiectasis as not commissioned for this COPD only - all other respiratory conditions are classed as inappropriate based on the criteria for our programmes set by commissioning Kypho-scoliosis, NMD. Contact is 1:12 for non-copd:copd. Currently running at about 2:12 mainly Bx and ILD Service commissioned for COPD but included bronchiectasis 90% COPD 10% others 80% COPD 20% asthma/bronchiectasis/fibrosis 80% Mainly COPD Majority are COPD approx 85% the remaining 15% are bronchiectasis/fibrosis 90% COPD but we do not turn anyone down based on disease Response to Question 4.4 Figure 11: What is the average waiting time between receiving referral and patient starting course? (in weeks) Table 12: Average wait Average wait (weeks weeks) 13.09 Count 11 response 4 19

Response to Question 4.5 Figure 12: How many patients were referred to this programme between January 2010 and January 2011? (Please include all those that you receive even if they did not commence programme). Response to Question 4.6 Figure 13: Of those referred between 1 January 2010 and 1 January 2011 how many patients commenced rehab? Response to Question 4.7 Figure 14: What is your Criteria for completion Table 13: Referrals. Response Count 1 94 2 280 3 61 4 80 5 240 6 350 7 77 8 45 9 461 10 (Since Sept 10) 53 response 5 Table 14: Number Commencing Response Number Commenced 1 84 2 166 3 29 4 55 5 80 6 269 7 25 8 40 9 185 10 44 Table 15: Criteria for Completion 5 Criteria Count % Attends 50% 1 9.1% Attends 60% 2 18.2% Attends 70% 1 9.1% Attends 80% 3 27.3% Attends 90% 3 27.3% Attends All 2 18.2% Completes final outcome 5 45.5% measures Other 1 9.1% response 4 20

Response to Question 4.8 Figure 15: Of those patients referred who commenced between 1 January 2010 and 1 January 2011, how many completed a course Table 16: Number completing Number Response Completing 1 57 2 111 3 31 4 45 5 64 6 252 7 80% 8 17 9 36 10 121 11 42 response 4 1.4 Responses to Individual Questions: Early Pulmonary Rehabilitation Response to Question 5.1 Figure 16:Do you target patients who have had a recent hospital admission? Table 17: Target recent admission Count % Yes 6 54.55% 5 45.45% response 4 Response to Question 5.2 Figure 17: How do you target this group Table 18: Route Route Count % COPD Early discharge 2 20% Direct referral respiratory ward staff 2 10% GP 1 10% Direct Referral form 2 20% Referral on discharge 1 10% Trying 1 10% t applicable 1 10% response 5 21

Response to Question 5.3 Figure 18: Average waiting time from hospital discharge to beginning Pulmonary Rehabilitation? Table 19: Average Wait Average wait (weeks) 5.2 Count 10 response 5 1.5 Responses to Individual Questions: Funding and Commissioning Response to Question 6.1 Figure 19: Do you have NHS secure Funding for your Pulmonary Rehabilitation programme? Table 20: Secure funding? Count % Yes 7 63.6% 4 36.4% response 4 Response to Question 6.2 Figure 20: Are you involved with Commissioning in your area? Table 21: Involvement in Commissioning? Count % Yes 5 45.5% 4 36.4% About to be 2 18.2% response 4 22