Patients Experience of the COPD Pathway and Awareness and Experience of Pulmonary Rehabilitation

NHS Newcastle North & East and NHS Newcastle West Clinical Commissioning Groups Patients Experience of the COPD Pathway and Awareness and Experience of Pulmonary Rehabilitation September 2014

Involve North East 26 Hawthorn Terrace Newcastle upon Tyne NE4 6RJ Tel: 0191 226 3450 www.involvene.org.uk Deaflink Key House 11 Tankerville Place Jesmond Newcastle upon Tyne NE2 3AT Tel: 0191 281 2314 www.deaflink.org.uk Health and Race Equality Forum Carnegie Building Atkinson Road Benwell Newcastle upon Tyne NE4 8XS Tel: 0191 226 1221 www.haref.org.uk

Contents Executive Summary I-XIV Section 1: Introduction 1 1.1 Newcastle West and Newcastle North and East 1 Involvement Forum 1.2 Context 1 1.3 The project 3 Section 2: Methodology 5 2.1 Telephone interviews 5 2.2 Self-administered questionnaires 5 2.3 Participants 5 Section 3: Findings 7 3.1 Identification and diagnosis 7 3.2 Treatment and care plan 10 3.3 Exacerbation management 14 3.4 Pulmonary Rehabilitation 18 3.5 The proposed new course 24 3.6 Summary 31 Section 4: Recommendations 39 4.1 Identification and diagnosis 39 4.2 Treatment and care plan 40 4.3 Exacerbation management 41 4.4 Referrals to pulmonary rehabilitation 42 Appendices 47

Executive Summary 1.0 Introduction NHS Newcastle North and East Clinical Commissioning Group (CCG) and NHS Newcastle West CCG are currently carrying out a review of their Chronic Obstructive Pulmonary Disease (COPD) pathway, including pulmonary rehabilitation courses to ensure patients receive the best possible care and treatment. Currently, patients access pulmonary rehabilitation at Newcastle Hospitals Royal Victoria Infirmary (RVI) or, for patients in the north and east of the city, at Benfield Park Medical Group. However, uptake of the pulmonary rehabilitation courses is currently low and the CCGs would like to improve access to the course. A new course is being proposed: The course would take place in a community setting (e.g. a community centre) Patients would attend the course for six weeks and sessions would be available at different times throughout the day The course content would include education about managing COPD, lung health and dealing with breathlessness. It would also include a programme of light physical activity tailored to suit the patients ability At the end of the course, the patient would be given an individual plan to help manage their condition in the future which would include details of support groups and classes that might help 2.0 The project The overall aim of this project was to understand patients experiences of the COPD pathway to inform the future service delivery model and to understand why awareness and uptake of the pulmonary rehabilitation course remains low, identifying changes to address this. To meet the aims of the project, the focus was on: COPD patients who are in the pathway including those referred to a pulmonary rehabilitation course and those who have not been referred to a course. The key objectives of the project were to: Explore patients experiences of their identification and diagnosis within the COPD pathway Explore patients experiences of their treatment and care plan within the COPD pathway Explore patients experiences of exacerbation management within the COPD pathway Gauge awareness of pulmonary rehabilitation and expectations of the course Explore patients experiences of pulmonary rehabilitation courses Identify barriers to uptake and completion of the course Identify ways to overcome any barriers I

Involve North East engaged with 127 people via face-to-face interviews or online questionnaires (see Appendix 2 for details). HAREF aimed to recruit and engage patients who were from black and minority ethnic communities via their network. This included asking people about their awareness of COPD amongst community groups and religious congregations. Deaflink aimed to recruit and engage with patients who were D/deaf (Deaf with a capital D refers to those who identify with the Deaf community and culture and deaf with a lower case d, to those who are deaf and do not identify with the Deaf community) and others with sensory issues such as deafblind, Hard of Hearing and visual impairments. Deaflink advertised through four of their public meetings, their e-bulletin and their website. In the Project Initiation Document, Risk 005 stated that HAREF and Deaflink may have difficulty identifying patients with COPD within their specific communities. The potential impact being a reduction in the diversity of participants and that the overall number of patients engaged would be lower than expected. This risk did materialise. 3.0 Findings 3.1 Identification and diagnosis The majority of patients, 73 people (75.3%), said they first presented with symptoms at their GP surgery. A further 20 patients (20.5%) accessed hospital services with symptoms and were then diagnosed. Ninety patients (80.3%) presented with symptoms of breathlessness and/or coughing or with an exacerbation of another condition such as asthma or bronchitis. Of those 90 patients, 56 (62.2%) presented at their GP, 10 people (11.2%) attended the hospital, two people (2.2%) presented at the Chest Clinic and two (2.2%) at their Practice Nurse. Twenty people (22.2%) did not respond. Of the 55 patients who responded with exact timescales, over one third of patients (21 people, 38.2%) received their diagnosis the same day as they presented with symptoms. A further 17 people (31.0%) received their diagnosis within four weeks. For a smaller number of patients, nine people (16.3%) their diagnosis took several months and for eight people (14.5%) it took one year or more. Overall, 85.1% of patients (80 people) were happy with the time it took to receive their diagnosis. Just over half of patients, 64 people (51.6%), said the importance of exercise and being active was explained to them as much as taking medication and the remaining 60 people (48.8%) said it was not explained. Over one third of participants (46 people, 39.0%) also reported being given no information when they were diagnosed to help them understand what COPD is and how to manage it. Of those patients who received information, 36 people (30.5%) had a discussion with a healthcare professional and 31 people (26.3) were given a leaflet or information sheet to take away. Sixty-one patients (51.7%) felt they were not given enough information. II

3.2 Treatment and care plan A total of 92 patients (72.4%) said their treatment was discussed with them and 86 (93.5%) of those people were happy with their treatment, with 75 people (81.5%) reporting it met their needs and expectations. The remaining 34 patients (26.8%) said their treatment was not discussed with them and, of those people, 16 (47.1%) felt a treatment plan would have helped. The vast majority (112 people, 88.2%) of patients were shown how to use their inhalers and were confident in using their medication. Forty-nine patients (38.6%) said that inhalers, pulmonary rehabilitation and smoking cessation are equally important in the treatment and management of COPD. Eight people (6.3%) were not sure. Seventy patients (55.1%) thought that that some forms of treatment were more important than the others. Of those, 31 said that a health professional did not explain it to them and two said it had been explained. Eighty-four patients (66.1%) were given no information about their treatment, 25 people (19.7%) were given a verbal explanation, nine (7.1%) were given lifestyle advice around smoking cessation and exercise and nine (7.1%) were given written information about their medication. Suggestions to improve information were: Leaflets or written information about medication More information about possible treatment Advice about smoking cessation and exercise Seventy-two patients (56.7%) were given no information about self-management of their condition. In addition, 100 patients (78.7%) were not signposted to or given any supporting material or signposted for other organisations. Of the 27 patients (21.3%) that were signposted, 17 (58.6%) were given material about smoking cessation, six (20.7%) were given general lifestyle advice and five (17.2%) were given information from the British Lung Foundation. 3.2.1 Annual review A total of 104 patients (81.9%) said they receive an annual review and of those patients, 93 people (89.4%) felt the information was clear and explained in a way they could understand and 91 people (88.0%) felt there was enough time to discuss everything. Of the 93 people (89.4%) who had attended an annual review, 62 (53.2%) liked the appointments and suggested no changes or improvements are necessary. Nine patients (14.5%) requested more information about COPD and nine patients (14.5%) also suggested the need for more explanation of what the annual review is and an explanation of the results from the review. Twenty three patients (18.1%) had not received an annual review and, of those people, 21 (91.3%) were not aware they should receive an appointment for a review each year. 3.3 Exacerbation management Eighty-one patients (63.8%) reported that they had an exacerbation of their condition. Thirty-one patients (40.3%) self-managed a flare up by resting while a III

further 32 people (41.6%) said they received antibiotics and/or steroids to manage their flare ups. For a 15 patients (19.5%), an exacerbation had led to a hospital visit or an emergency admission. Again, the majority of patients (80 people, 60.3%) had been given no information about flare ups and how to manage their condition if it worsened. Of this group, 35 patients (43.8%) were keen to receive information about flare ups but were not sure what would be helpful. Twenty-seven patients (71.1%) wanted to know about what a flare up is and who to contact. One hundred and two patients (80.3%) said they would know who to contact if they had a flare up with the majority of patients (80 people, 78.4%) said they would contact their GP. However, patients generally said they would contact their GP if they are unwell and not because they were given information or instructed to do so for a flare up. Ninety-three patients (73.2%) said they did not have a rescue pack at home and the majority, 62 people (66.7%), would not want one or would only consider having a rescue pack if their condition worsened. The remaining 31 patients (33.3%) thought a rescue pack would be helpful to have at home. Of those who did have a rescue pack, only one person (2.9%) said they did not know how to use it. 3.3.1 Patient experience Overall, 77 patients (60.6%) said they were happy with their experience of COPD services with positive comments around medication and access to medication (11 people, 12.4%), information given (nine people, 10.1%) and the lifestyle advice received (six, 7.8%). Forty-four patients (34.6%) highlighted issues that could be solved. Twenty-nine patients (41.4%) felt more information about COPD and how to manage the long-term condition was necessary. Other suggestions of improvements included access to GP services (11 people, 25.0%) and issues with the diagnosis (11 people, 25.0%). 3.4 Pulmonary Rehabilitation 3.4.1 Referrals to pulmonary rehabilitation Patients were initially asked whether they had been referred or had attended a pulmonary rehabilitation course: Referred/attended No. of % of responses responses Referred and completed the course 10 7.9 Referred and waiting to attend the course 5 3.9 Referred and did not complete the course 2 1.6 Referred and did not attend the course 1 0.8 Never referred to the course 109 85.8 Total 127 100.0 As shown in the table above, the vast majority of patients had never been referred to pulmonary rehabilitation and were unaware of the course and its benefits. Of all the patients who had been referred, no one refused to attend the course. IV

3.4.2 Referred and completed pulmonary rehabilitation Ten patients (7.9%) had completed the pulmonary rehabilitation course, six (60.0%) of which attended at the RVI and four (40.0%) at Benfield Park Medical Group. The patients were referred either by their GP or Practice Nurse or by a healthcare professional at the RVI. Seven patients (70.0%) were given a leaflet and verbal information before attending the course. Those who completed the course reported that the physical activity worked well and the opportunity to meet people with the same condition was positive. Other ways in which the course worked well was the motivation from staff leading the course, the breathing exercises, the information provided and the talks from healthcare professionals. Three people (30.0%) reported they did not like the course because it was too much for their condition. Suggestions of how the course could be improved included more information about how to manage COPD in the future, more sessions each week and that the course should have their own facilities. 3.4.3 Referred and waiting to attend pulmonary rehabilitation Five patients (3.9%) had been referred and were waiting to attend a course, one (20.0%) of whom reported waiting a number of years and could not remember much information about pulmonary rehabilitation. The four remaining patients (80.0%) were introduced to the course by their GP or by the Chest Clinic. Three (60.0%) were due to attend the RVI course and one person (20.0%) would be attending Benfield Park Medical Group. 3.4.4 Referred and did not complete pulmonary rehabilitation Two patients (1.6%) were referred to the course and did not complete it, one (50.0%) at each location. They were introduced to the course by their GP and Practice Nurse who explained the need to exercise as well as take medication. One person (50.0%) did not complete the course because they felt it was not helping them, they did not enjoy it, it made their breathing worse and it was too far to travel. The other patient (50.0%) wanted to attend but was turned away due to a chest infection. 3.4.5 Referred and did not attend pulmonary rehabilitation One patient (0.8%) was referred to the course at the RVI by their GP and chose not attend because they were unwell due to another medical condition and did not feel it was appropriate. 3.4.6 Never referred to pulmonary rehabilitation A total of 109 patients (85.8%) have never been referred to pulmonary rehabilitation, 5 people (3.9%) are currently waiting to attend and one person (0.8%) was turned away due to illness. Of these patients, a total of 74 (64.3%) said they would attend a future course and 41 patients (35.7%) said they would not. Of those that would not attend they said they did not feel they needed to (21 people, V

55.3%), they did not feel it was appropriate (9 people, 23.7%) and they felt it would make no difference to their condition (3 people, 7.9%). Five people (13.2%) also said they were a carer for a partner or they were housebound and could not attend. The most important factor for people to attend a course was the location with over half of patients (66 people, 52.0%) stating this as being important because of the convenience and the need to be accessible by public transport. Transport and time of day were also very important for patients with just over one third of patients (48 people, 37.8% for each) selecting these factors because of the need to use public transport and to be able to fit the course around other commitments. Just over one quarter of patients (34 people, 26.8%) said that nothing was important for them to attend because they would not want to attend or they would only attend if their condition worsened. Eighty-three patients (72.2%) said they had no concerns with undertaking a course that includes physical activity. A noticeable minority of 32 patients (27.8%) did have concerns about the course including physical activity. 3.5 The proposed new course 3.5.1 Naming the course Fifty-four patients (42.5%) thought the current name, pulmonary rehabilitation, was suitable. A further 18 patients (14.2%) did not like the name reporting that it was off-putting and they did not understand it, but could not suggest an alternative. Twenty-four (18.9%) suggestions were received for a name with the most popular being Breathe Easy with four suggestions and Lung Health with two suggestions. 3.5.2 Encouragement to attend the proposed new course All 127 patients provided responses detailing what would encourage or support them to attend a course: Factors No. of % of % of responses* responses participants My GP referring me 67 12.6 52.8 Having classes in community locations 63 11.9 49.6 More information about the course 58 10.9 45.7 Follow up after the course 54 10.2 42.5 Having the British Lung Foundation endorse it 48 9.0 37.8 Having transport provided 46 8.7 36.2 A promotional campaign about the benefits of pulmonary rehabilitation 44 8.3 34.6 Just being able to turn up/drop-in 41 7.7 32.3 Being able to speak to people who have attended the course 36 6.8 28.3 Nothing 33 6.2 26.0 Having classes in the same locations as stop smoking services 31 5.8 24.4 Other 10 1.9 7.9 Total 531 100.0 *Participants could give more than one response VI

All of the above factors were seen to be important by patients. Of those 33 patients (26.0%) who said nothing would encourage them, 13 (39.4%) would not attend regardless of these factors, nine (27.3%) would attend regardless of these factors and four (12.2%) would only attend if their condition worsened. 3.5.3 Expectations of the proposed new course Patients expectations of the course varied with over one third of 103 respondents (35 people, 34.0%) expecting to be given more information about COPD in general. Over one quarter of patients expect to be able to manage their condition better into the future (28 people, 27.2%) and to have a positive personal outcome such as becoming less breathless or being able to be more active (26 people, 25.2%). Patients would also expect to be given breathing exercises (16 people, 15.5%), lifestyle advice (14 people, 13.6%), a basic explanation of COPD (nine people, 8.9%) and to be able to talk to and meet people in the same situation (6 people, 5.8%). In terms of the content that should be included in the pulmonary rehabilitation course, over two fifths of 53 respondents (23 people, 43.4%) wanted lifestyle advice about exercise, diet and smoking cessation. Patients also wanted to learn how to manage their breathing and their COPD (21 people, 39.6%). Almost all of the responses received about course content and expectations fit well with the current pulmonary rehabilitation course which is an exercise class at a level appropriate to the participant including advice about breathing, relaxation and how to deal with lung disease. Eighty-nine patients (70.1%) suggested they would like follow up after the course had ended. A total of 66 patients (74.2%) provided 76 suggestions: Follow up suggestions Check-up with course leaders and course attendees to ensure patients are adhering to the advice Contact number and/or a helpline for further support No. of responses* % of responses % of participants 27 35.5 40.9 15 19.7 22.7 A continual peer support group 12 15.8 18.2 Signposting information to other organisations that could provide further support 12 15.8 18.2 Written information 10 13.2 15.2 Total 76 100.0 *Participants could give more than one response VII

4.0 Recommendations 4.1 Identification and diagnosis 4.1.1 Recommendation 1: Patient diagnosis Eleven patients (8.7%) said they would like the diagnosis process improving as they were either unaware of their diagnosis or, when diagnosed, the condition was not explained, resulting in the patient disputing their diagnosis of COPD. One of the 11 patients explained issues around seeing multiple healthcare professionals within one service, whereby each professional expected the patient had already previously been told the necessary information. Although only a small number of patients reported this experience, it is an issue to be addressed. Everything has worked very well. My only issue was seeing different people at the hospital and then they don't know what's been said the last time. No one ever said to me in an appointment I had COPD, I think they all presumed someone else had told me before. It is recommended that: The first health professional providing the diagnosis informs the patient clearly that they have developed COPD and provides a clear explanation of the condition. 4.1.2 Recommendation 2: Information at diagnosis Forty-six patients (39.0%) said they received no information during their diagnosis with a further 36 patients (30.5%) having a short discussion with their healthcare professional. Over half of patients (61 people, 51.7%) said they felt they were not given enough information. One third of patients (41 people, 33.1%) also reported that their diagnosis was not explained to them in a way they could understand. I wasn't really given any information. I found most of it out myself by asking around and reading about it. I would have liked more information. It is recommended that: Patients receive clear information from their health professional about their diagnosis. This should include a description of what COPD is and how to manage the condition so that they fully understand what it means to have COPD. 4.1.3 Recommendation 3: Newly diagnosed patients When patients were asked what could make their annual review better, one patient (1.6%) said that review appointments should be more often when first diagnosed. Although only one patient suggested this, the general lack of awareness of the condition amongst patients and the lack of information, evidences the need for more opportunities for patients to interact with healthcare professionals. You should have more time to discuss things and your annual review should be every 6 months especially when you re first diagnosed - depending on your condition. They don't really explain much; they just tell you if it s the VIII

same or a little worse. It is recommended that: When first diagnosed, patients are offered the opportunity to attend review appointments at their GP surgery more often than annually to ensure the patient receives the necessary support and information. 4.2 Treatment and care plan 4.2.1 Recommendation 4: Discussing treatment Thirty-four patients (26.8%) said their treatment was not discussed with them. It is recommended that: All patients are included in discussions about their treatment and a full explanation of their treatment is given both in relation to medication, inhalers and other treatment options such as smoking cessation or pulmonary rehabilitation and the equal importance of all of them in treating and managing their condition. 4.2.2 Recommendation 5: Information about treatment and self-management Eighty-four patients (66.1%) did not receive any information about their treatment. It was also evident that a further 72 patients (56.7%) received no information about self-management of their condition. Also, just under half of patients (60 people, 48.4%) were not told of the importance of exercise as well as their medication. One hundred patients (78.7%) were also given no details of organisations or supporting material that could help them. It is recommended that: Patients receive clear information from their health professional about their treatment, self-management, how it will benefit them and details of other organisations that could provide further support with their treatment and condition. Ensure that patients understand their condition fully, including the need to exercise as well taking medication. Healthcare professionals are made aware of the details of a range of organisations, support groups and resources which can be given to patients for further information and support. 4.2.3 Recommendation 6: Treatment options Nine patients (20.5%) reported issues with their medication including unknown side effects and a lack of information, some of whom would have liked other treatment options to be made available to them. Taking steroids causes osteoporosis and this wasn't explained to me at all. I've now broken a lot of bones and if someone had explained this, I would have liked to have seen if there was anything else I could do. IX

It is recommended that: Where appropriate, patients receive all the necessary information about treatment options for their condition, including information about side effects. 4.2.4 Recommendation 7: Annual review Although the majority of patients (104 people, 81.9%) reported they have an annual review, 23 patients (18.1%) did not and they were not aware they should receive one. Of those who received an annual review, 29 patients (46.8%) suggested improvements to the appointments. I would like the breathing tests explained in more detail and to have time to discuss what I could do to improve these results. Two breathing tests and that s it. It is recommended that: Patients are made aware of and given an appointment for an annual review. The review should also provide clear information about its purpose, the outcome of the review and should ensure enough time for patients to discuss any issues. 4.3 Exacerbation management 4.3.1 Recommendation 8: Information about flare ups Of the 81 patients (63.8%) who said they had an exacerbation of their condition, 31 patients (40.3%) self-managed flare ups by resting and relaxing. Eighty patients (63.0%) said they were given no information about how to deal with and manage flare ups. I just gasp and cough and wait for it to pass. It is recommended that: Patients receive clear information from their health professional about how to deal with flare ups. This should include information about how to recognise the signs of a flare up, who to contact and instructions for patients on how to manage it. 4.3.2 Recommendation 9: Rescue packs Ninety-three patients (73.2%) reported that they did not have a rescue pack and of those patients, 31 people (33.3%) would like one. It is recommended that: Patients are included in a discussion with their health professional about the need for a rescue pack, where appropriate. X

4.4 Referrals to pulmonary rehabilitation 4.4.1 Recommendation 10: Referrals to pulmonary rehabilitation One hundred and nine patients (85.8%) had never been referred to pulmonary rehabilitation and were not aware of the course. When the course was explained to patients, 74 people (64.3%) said they would be keen to attend the course. Sixtyseven patients (52.8%) also stated that if their GP referred them to the course it would encourage them to attend and, in addition, 44 patients (34.6%) said a promotional campaign about the benefits of the course would also be an encouragement. Those who said they would not attend felt they did not need the course and could not see the benefits of it. It is recommended that: The profile of pulmonary rehabilitation is raised to ensure healthcare professionals and patients are more aware of the course and its benefits. A promotional campaign is developed to promote the use and need for pulmonary rehabilitation, both amongst healthcare professionals and patients. Patients are made aware of pulmonary rehabilitation as part of their treatment options and the benefits of the course are clearly explained. This should be for all patients, regardless of the severity of their COPD, to ensure they understand the long-term benefits to their condition. 4.4.2 Recommendation 11: Patient attendance Patients were asked what would encourage and support them to attend a course: Factors No. of % of % of responses* responses participants My GP referring me 67 12.6 52.8 Having classes in community locations 63 11.9 49.6 More information about the course 58 10.9 45.7 Follow up after the course 54 10.2 42.5 Having the British Lung Foundation endorse it 48 9.0 37.8 Having transport provided 46 8.7 36.2 A promotional campaign about the benefits of pulmonary rehabilitation 44 8.3 34.6 Just being able to turn up/drop-in 41 7.7 32.3 Being able to speak to people who have attended the course 36 6.8 28.3 Nothing 33 6.2 26.0 Having classes in the same locations as stop smoking services 31 5.8 24.4 Other 10 1.9 7.9 Total 531 100.0 *Participants could give more than one response XI

It is recommended that: Consideration is given to all of the above statements to ensure accessibility and attendance, with particular emphasis on location and adequate information being provided. 4.4.3 Recommendation 12: Important factors for attendance Patients were asked what factors would be important to enable them to attend and complete a future course: Factors No. of % of % of responses* responses participants Location 66 23.8 52.0 Transport 48 17.3 37.8 Time of day 48 17.3 37.8 Duration of the course 30 10.8 23.6 Type of physical activity 27 9.7 21.3 The cost of buying suitable clothing 10 3.6 7.9 Communication support 7 2.5 5.5 Single sex group 4 1.4 3.1 Nothing 34 12.2 26.8 Other 4 1.4 3.1 Total 278 100.0 *Participants could give more than one response All factors were identified as being important for patients to attend a course. Patients explained why the above factors were important to them with a need for the location to be local and convenient. Patients felt the course should be accessible by public transport; available at different times during the day; tailored to meet individual abilities; and should not be too long to take patients other commitments into account. Some patients identified the need for communication support to assist with reading or due to a hearing or sight impairment. Three female patients and one male patient also stated they would prefer a single sex group. Four patients who gave other reasons said taking into account caring responsibilities was important or that they are housebound. It is recommended that: Consideration is given to all of the above factors to ensure accessibility and attendance. 4.4.4 Recommendation 13: Course name Forty-six patients (36.2%) did not like pulmonary rehabilitation as a name for the course stating that it was off-putting, too technical and they did not understand what it meant. A number of suggestions were received for new names and the most popular was Breathe Easy. I don't understand the name; it should just be something less technical. XII

It is recommended that: The name of the course is changed to something understandable to patients to encourage people to attend the course. 4.4.5 Recommendation 14: Course content Patients had a number of ideas of what should be included in a pulmonary rehabilitation course with 52 people (46.8%) wanting more information about COPD including a basic explanation and moving onto more detailed information. A further 37 people (33.3%) wanted to know how to manage their condition, 37 people (33.3%) wanted lifestyle advice such as diet and physical activity and 28 people (25.2%) wanted breathing exercises. I d want to learn about what will happen into the future - what's going to happen and what I can do to help. I would like to be better and be more knowledgeable. It is recommended that: The course content is developed in relation to the information provided by patients, specifically taking account of the need for information about COPD and how to manage their condition. 4.4.6 Recommendation 15: Physical activity Patients were asked if they had any concerns about undertaking a course that includes physical activity and a noticeable minority of 32 patients (27.8%) said they would definitely have concerns with the main reason being other medical conditions preventing them from taking part and being worried about their condition. Yes, I would be concerned. I have atrial fibrillation and other conditions and I don t think I'm physically capable of going on a course like that. It is recommended that: The healthcare professional referring a patient to pulmonary rehabilitation clearly explains the physical activity aspect of the course, particularly how the course is tailored to individuals ability, and discusses any concerns with the patient. 4.4.6 Recommendation 16: Follow up after the course Follow up after the course was highlighted in a number of places throughout the questionnaire and is evidently an important factor for patients. Sixty-six patients (52.0%) provided suggestions for follow up ranging from a short catch up meeting with a healthcare professional to a helpline or some form of more continuous support. It would be good to have follow up after the course. Follow on support to go to the gym and keeping up the breathing exercises with people from the group. Support groups would be helpful so I could chat to people with the same condition and understand their experiences and not bother the doctor. XIII

It is recommended that: A range of follow up options are developed to suit the variety of needs of patients and that, at a minimum, a follow up appointment is arranged for course attendees. Patients are informed of a range of organisations and support groups, specifically including the British Lung Foundation as this is held in high regard by patients. XIV

Section 1 - Introduction 1.0 Introduction 1.1 NHS Newcastle West and Newcastle North and East Involvement Forum 1.1.1 Involve North East Involve North East is an independent charity working across Newcastle and the North East. We are experts in innovative and practical involvement, working with patients, communities and harder to reach groups to gain the insight needed to design the best, most responsive and cost-effective health and social care services. 1.1.2 Health and Race Equality Forum (HAREF) HAREF is a network focused on reducing inequalities. The network keeps the voices of people across black and minority ethnic communities heard in settings where decisions are made about health service developments. Positive relationships, consistency and quality are at the heart of the work of the Health and Race Equality Forum. 1.1.3 Deaflink Deaflink is an open, inclusive and supportive organisation working to empower and improve the quality of life of D/deaf, hard-of-hearing and deafblind people in Newcastle. We aim to improve access to employment, education, health, leisure and social opportunities and to raise awareness of the needs of these excluded groups to organisations and agencies through training, support and advocacy. 1.2 Context 1.2.1 Chronic Obstructive Pulmonary Disease (COPD) prevalence in Newcastle COPD is the name for a collection of lung diseases including chronic bronchitis, emphysema and chronic obstructive airways disease. People with COPD have difficulties breathing, primarily due to the narrowing of their airways. Typical symptoms of COPD include increasing breathlessness when active, a persistent cough with phlegm, frequent chest infections. Exacerbations of COPD are characterised by increased shortness of breath, reduced quality of life and muscle weakness. In Newcastle, COPD exacerbations are the second most common cause of emergency admission to hospital and the fifth commonest cause of readmission. COPD prevalence rates are high across the city. Estimated rates are significantly higher than the English average (see Public Health England s Respiratory Profiles 2013) and COPD is a major contributor to the gap in life expectancy between the most and least deprived areas of the city. 1

NHS Newcastle North and East CCG NHS Newcastle West CCG 1.2.2 Commissioning priorities Within their Locality Commissioning Plans for 2013/14-2015/16 both CCGs identified COPD as a priority area for improvement with a target of reducing the number of emergency admissions to hospital by 5% in 2013/14 and by 20% in 2015. This will be achieved by further developing the CHEST team to support patients in the community including the establishment of a community based pulmonary rehabilitation service and review of associated pathways. 1.2.3 Pulmonary rehabilitation Pulmonary rehabilitation can help improve the wellbeing of people who have ongoing breathing problems. Patients are referred onto a rehabilitation course by their GP or hospital staff. The course does not replace medical therapy but is used alongside it and covers: Exercise training Breathing strategies Energy-conserving techniques Nutritional counselling Education on the patient s condition and how to manage it Psychological counselling and/or group support Anyone who has breathlessness which is disabling them is eligible to attend the course and this includes patients with COPD and other respiratory conditions. Currently, patients with COPD can attend pulmonary rehabilitation at Newcastle Hospitals Royal Victoria Infirmary (RVI) or, for patients in the north and east of the city, at Benfield Park Medical Group. However, uptake of pulmonary rehabilitation courses is low and NHS Newcastle North and East and Newcastle West CCGs have drafted a new service specification for the course to improve access. A new course is being proposed: 2

The course would take place in a community setting (e.g. a community centre) Patients would attend the course for six weeks and sessions would be available at different times throughout the day The course content would include education about managing COPD, lung health and dealing with breathlessness. It would also include a programme of light physical activity tailored to suit the patients ability At the end of the course, the patient would be given an individual plan to help manage their condition in the future which would include details of support groups and classes that might help 1.3 The project 1.3.1 Aim In 2010 Involve North East carried out research on behalf of Newcastle North and East Commissioning Group as part of practice based commissioning. The research was to explore COPD patients experiences of the treatment and care provided to them, to gather views about the support they receive to manage their condition and any changes that they would like to see made to the pathway. Also, in 2012 Involve North East carried out research on behalf of Newcastle North and East CCG to investigate uptake of, and attitudes towards, pulmonary rehabilitation courses by COPD patients in order to learn more about the reasons behind the low uptake of courses and to encourage better participation and completion rates in future. Both of these reports were used to inform early discussions about this research and were used when formulating questions. The overall aim of this project was to understand patients experiences of the COPD pathway to inform the future service delivery model and to understand why awareness and uptake of the pulmonary rehabilitation course remains low, identifying changes to address this. To meet the aims of the project, the focus was on: COPD patients who are in the pathway including those referred to a pulmonary rehabilitation course and those who have not been referred to a course. 1.3.2 Objectives The key objectives of the project were to: Explore patients experiences of their identification and diagnosis within the COPD pathway Explore patients experiences of their treatment and care plan within the COPD pathway 3

Explore patients experiences of exacerbation management within the COPD pathway Gauge awareness of pulmonary rehabilitation and expectations of the course Explore patients experiences of pulmonary rehabilitation courses Identify barriers to uptake and completion of the course Identify ways to overcome any barriers For participants that have attended a pulmonary rehabilitation course previously, we focused on their experience. For those who have partially attended a course or who chose not to attend we explored any barriers to attending and ways to overcome this. For all participants, including those who were not referred to pulmonary rehabilitation, we explored the proposed service delivery model. 4

Section 2 - Methodology 2.0 Methodology In order to meet the objectives of the project, distinct and complementary qualitative techniques were used. A qualitative methodological approach was deemed to be the most appropriate as it is concerned with gaining a depth of understanding of how people feel, their beliefs, reasoning and motivations and therefore fitted with the objectives of the project. 2.1 Telephone interviews Telephone interviews took place with COPD patients allowing the interviewees to explore issues arising from the questions and provide prompts to deliver richer and more detailed information than is usually yielded by self-administered questionnaires. A total of 124 telephone interviews took place. 2.2 Self-administered questionnaires In order to enable as many people as possible to give their views, within a short timeframe, an online questionnaire using SurveyMonkey was developed. The questions were the same as those used in the telephone interviews to enable consistent data collection and analysis. A total of three online surveys were completed. See Appendix 1 for a copy of the questionnaire. 2.3 Participants All COPD patients including those who had attended a pulmonary rehabilitation course, those who were referred and partially attended or chose not to attend and those who had never been referred were targeted to take part in the research. In order to recruit and engage participants the three organisations used the following methods: Involve North East recruited and engaged patients via: o All GP practices in the city were asked to identify 30 patients with COPD, who were sent a letter asking them to take part in the research o Community CHEST Team collecting consent from relevant patients who were interested in taking part. Involve North East contacted these patients o NHS Smoking Cessation collecting consent from relevant patients who were interested in taking part. Involve North East contacted these patients o Attending the British Lung Foundation s Meet the Experts event 5

o Attending Next Steps exercise on referral class run by Newcastle HealthWORKS o Involve North East s and Healthwatch Newcastle s e-news recipients o Involve North East s People s Panel HAREF aimed to recruit and engage patients who were from black and minority ethnic communities via: o Asking amongst the HAREF network, including community groups and religious congregations Deaflink aimed to recruit and engage patients who were D/deaf patients (Deaf with a capital D refers to those who identify with the Deaf community and culture and deaf with a lower case d, to those who are deaf and do not identify with the Deaf community) and others with sensory issues such as deafblind, Hard of Hearing and visual impairments via: o Advertising through their four public forums o Deaflink s e-bulletin o Deaflink s website Overall, Involve North East engaged with 127 people. For a full participant profile, see Appendix 2. In the Project Initiation Document, Risk 005 stated that HAREF and Deaflink may have difficulty identifying patients with COPD within their specific communities. The potential impact being a reduction in the diversity of participants and that the overall number of patients engaged would be lower than expected. This risk did materialise. 6

Section 3 - Findings 3.0 Findings This section provides a summary of the findings of the research conducted by Involve North East though telephone interviews and online questionnaires completed by 127 COPD patients. 3.1 Identification and diagnosis All 127 COPD patients were asked about their experience of their identification and diagnosis. All patients were initially asked how they found out they had COPD. Three people (2.4%) did not provide responses to any questions relating to their diagnosis as they did not live in the area at the time or they could not remember their diagnosis. Ninety-seven patients (76.4%) explained where they first presented with symptoms of their condition: Service No. of % of responses responses GP 73 75.3 Hospital 20 20.5 Chest Clinic 2 2.1 Practice Nurse 2 2.1 Total 97 100.0 One hundred and twelve patients (88.2%) also provided details of symptoms or reasons for attending a service: Symptoms/reasons No. of % of responses responses I was breathless and/or coughing a lot 45 40.2 I contracted multiple chest infections 20 17.8 I found out because of tests for another condition 17 15.2 I had symptoms from my asthma 10 8.9 I had other general symptoms 9 8.0 I had symptoms from bronchitis 5 4.5 I had a routine health check 5 4.5 I had symptoms from emphysema 1 0.9 Total 112 100.0 From the above table, the majority of patients (90 people, 80.3%) presented with symptoms of breathlessness and/or coughing or with an exacerbation of another condition such as asthma or bronchitis. Of these patients, 56 (62.2%) presented at their GP, 10 people (11.2%) attended the hospital, two people (2.2%) presented at the Chest Clinic and two (2.2%) at their Practice Nurse. Twenty people (22.2%) did not respond. 7

Patients were then asked how long it took to be given a diagnosis of COPD and whether they were happy with the length of time. Ninety-four patients (75.8%) could recall this information, of which 33 people (35.1%) could not remember the exact timescales of their diagnosis but stated the process was quick and a further 6 people (6.4%) said the process was too long. The remaining patients gave specific timescales of their diagnosis: Diagnosis timescales No. of % of responses responses Diagnosed the same day 21 38.2 Diagnosed within 4 weeks 17 31.0 Diagnosis took several months 9 16.3 Diagnosis took one year or more 8 14.5 Total 55 100.0 Overall, 85.1% (80 people) of the 94 respondents (74.0%) were happy with the length of time it took to be diagnosed but 14.9% (14 people) would like to have found out sooner. Patients were also asked to describe their experience of receiving their diagnosis. Of the 73 respondents (58.9%) to this question, 27 patients (37.0%) said they were fine about receiving the diagnosis and were not surprised by it. I just take it as it is; just follow the doctor s advice so I wasn't that bothered. I felt ok about it. I was told I'd lost 23% of my breathing capacity and that it wouldn't come back. There s not much you can do about it and I didn't feel any different. l knew my chest and lungs were damaged so l was not surprised to hear. However, 24 patients (32.9%) had negative emotions towards their diagnosis, including shock, disappointment and fear. I was quite shocked. I knew I was poorly but I didn't realise it was something like this. They gave me a shock when they said I had the lungs of a 98 year old. I was a bit down and I wondered about the prognosis for the future. It was upsetting but it is my own fault. Just over one fifth of respondents (15 people, 20.5%) said they had a lack of understanding about COPD and their diagnosis. I just didn't know what COPD was and thought it was another type of asthma. 8

It was very confusing. When I was discharged, nobody mentioned COPD to me, I just had this new medication and I didn't know why. They didn t really explain how bad it was when I was diagnosed. Well, they didn't explain much in the appointments. I found out because of a letter from the hospital. I'd asked to have copies of the letters they sent back to my GP and it said it in one of them. Five patients (6.8%) described their experience in relation to the time it took to be given a diagnosis stating that it took too long and the health professionals should have reached a conclusion sooner. A further two people (2.8%) said they had to research COPD themselves to find out information and how to manage the condition. Patients were then asked if they felt the importance of exercise and being active was explained to them as much as taking medication when they were initially diagnosed. A total of 51.6% (64 people) of patients said it was explained while 48.4% (60 people) of patients said it was not. Continuing to focus on their diagnosis, patients were asked what information, if any, they received to help them understand what COPD is, how to treat it and how to manage it. Six patients (4.8%) could not remember and the remaining 118 people (95.2%) provided the following responses: Information about COPD No. of % of % of responses* responses participants No information given 46 36.8 39.0 Discussion with GP/nurse/consultant 36 28.8 30.5 Leaflet or information sheet 31 24.8 26.3 Booklet 11 8.8 9.3 Referral to Pulmonary Rehabilitation 1 0.8 0.8 Total 125 100.0 *Participants could give more than one response Sixty-one participants (51.7%) felt the information they were given was not enough and 57 participants (48.3%) felt it was. I wasn't really given any information. I found most of it out myself by asking around and reading about it. I would have liked more information. Wasn't told or given anything, I would have liked more. I just had verbal information from the doctor and nurse. I would have liked more. I was given a leaflet it was useful. It explained about the condition, advised me to stop smoking and that exercise would help. 9

Thirty patients (26.6%) explained what information they found most helpful with 10 people (33.3%) reporting that the discussion with their GP, nurse or consultant was the most helpful. Eight patients (26.7%) said the written information they received was the most helpful, three (10.0%) said their own research helped them the most, two (6.7%) said the medication and one person (3.3%) said pulmonary rehabilitation. Six patients (20.0%) found information they received from other sources such as their pharmacist or physiotherapist was the most helpful. Eighty-three patients (66.9%) said that their diagnosis was explained to them in a way they could understand. The remaining 41 people (33.1%) said they did not understand their diagnosis and were asked what further information or support they would have liked. Thirty-eight patients (30.6%) provided a response, of which 11 (28.9%) said they would want information and support but were not sure in what form. The remaining 27 patients (71.1%) provided the following response: Information about diagnosis No. of % of responses responses An explanation from the GP/nurse/consultant 18 66.7 Written information to take home 6 22.2 Nothing 2 7.4 How to manage COPD 1 3.7 Total 27 100.0 It would have been better if things were explained to me in layman's terms. I would have liked a leaflet to take home. I m not sure, but I would have liked something to help. 3.2 Treatment and care plan 3.2.1 Treatment plan All 127 patients were asked if their treatment for COPD was discussed with them. Ninety-two patients (72.4%) said it was and one person (0.8%) could not remember. Of this group, 86 people (93.5%) were happy with the treatment they received with 75 people (81.5%) reporting they felt it met their needs and expectations. The remaining 34 patients (26.8%) said their treatment was not discussed with them. Those patients were then asked if a treatment plan would have helped them and 16 people (47.1%) said it would, 13 (38.2%) said it would not and five (14.1%) were not sure. Patients were then asked if they thought that inhalers, pulmonary rehabilitation and smoking cessation are all as important in the treatment and management of COPD. Forty-nine patients (38.6%) said that all three were equally important and eight people 10