Appendix H A Final Report Presenting Findings from Phase 1 & Phase 2 of the Evaluation of the Integrated COPD Service Manchester Metropolitan University – August 2010
NHS Wirral Commissioning Service Evaluation: SP09COPD Final Report A Final Report Presenting Findings from Phase 1 & Phase 2 of the Evaluation of the Integrated COPD Service.
Presented by Manchester Metropolitan University September 2010
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Contents
Appendix H Page number
1. Executive summary
3
2. Background
5
3. Aims and objectives
6
4. Methods
6
5. Data analysis
10
6. Findings of satisfaction survey
10
6.1 Efficiency of the service
10
6.2 Quality of care
11
6.3 Self-management and provision of information
12
6.4 Treated with confidence, respect and dignity
12
6.5 Teamwork and communication
13
6.6 Environment
13
6.7 Follow-up treatment after discharge
13
6.8 Provision of equipment
13
7. Findings - Interviews and Focus Groups
14
7.1 Service users (COPD / O2)
14
7.2 Service users (Pulmonary rehabilitation)
20
7.3 Service users Primary care assessment unit (PCAU)
26
7.4 Staff (COPD/O2)
31
8. External Stakeholders
41
8.1 Wirral Admission Prevention Service (WAPS) team
41
8.2 Community Matrons
43
9. Conclusions
47
10. Timescales
50
11. Further Work
50
12. Final comments
51
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1. Executive summary NHS Wirral commissioned Manchester Metropolitan University to explore the impact and effectiveness of an integrated Chronic Obstructive Pulmonary Disease (COPD) strategy incorporating the COPD/O2, pulmonary rehabilitation and Primary Care Assessment Unit (PCAU) elements of the service. The evaluation has captured the perspectives of service users, healthcare professionals delivering the services and other key stakeholders to gain an insight into the impact of the service. A mixed methods approach was adopted and this final report provides the analysis and interpretation of the Phase 1 and Phase 2 studies. Key issues: 1. The great majority service users and their carers were very satisfied with the content and delivery of both the COPD/O2 and PCAU services. 2. Staff were highly valued and praised by the service users for their diligence, hard work, flexibility, kindness and the efficient care they provided within the COPD/O2 and PCAU services. 3. Some enhancements to the services have already been implemented between Phase 1 and 2 of data collection. Staff members’ understanding of their service and their responsiveness to service users’ and colleagues’ feedback should be credited with many of these changes. 4. There is a need more for effective pathways of communication between the PCAU and the COPD/O2 service. These should also include the WAPS team and Community Matrons. Currently there is limited shared understanding about the purpose of different aspects of the service and how they can work together effectively to enhance care and support for those patients with COPD. 5. Staff teams need to develop robust mechanisms for sharing patient information during the referral processes among the COPD/ O2 service, PCAU, WAPS and Community Matrons. 6. The project team recommend serious consideration be given to enabling the respiratory nurses to prescribe medication directly. Prescribing through the GP is causing unnecessary delays in patients receiving treatment and appropriate medication. 7. In the context of the extension of the PCAU to a 24-hour service, we recommend assessment of the need for an out-of-hours COPD/ O2 service. An out of hour’s service has the potential to further reduce hospital admissions in the long-term, though this might be obviated by developments at the PCAU. 8. The majority of service users highly valued the benefit of pulmonary rehabilitation in improving their exercise tolerance, daily activities and socialization with family and friends. Some individualising of the programme may be required in response to individual patient need. 3
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9. Pulmonary rehabilitation sessions need to be extended beyond the current six-week period. Provision of a maintenance programme with periodical supervision of healthcare professionals within a community setting should be considered. 10. All patients need to be signposted into similar services in the local community. The Wirral Breath Easy Group and the Wirral Lung Group are two examples of long-term resident-led exercise groups in the local community. 11. The need was identified for a more formalised training programme for staff working on the PCAU, including condition-specific training in, for example, COPD and appropriate study leave. 12. PCAU staff members need to continue to undertake awareness and promotion exercises amongst healthcare professionals to ensure a wider understanding of the purpose of the PCAU and the criteria for inclusion.
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2. Background COPD is an umbrella term to describe chronic lung diseases, including bronchitis, emphysema and chronic asthma. COPD is characterised by an obstruction of the airways, caused by long-term damage to the lungs often brought about by tobacco smoke (although genetics and occupational factors can play a significant part). COPD affects the airways of the lungs (bronchioles) to narrow, bringing about permanent damage to the air sacs (alveoli). COPD is associated with progressive decline in lung function and frequent exacerbations, impacts significantly on the health and well-being of the individual, including their ability to undertake daily activities. Supporting and caring for individuals with COPD requires considerable human and financial costs to the NHS. It is estimated that there are 30,000 deaths per year in the UK, which are directly attributable to COPD, whilst there are a further 3 million affected by the disease, but undiagnosed living in the community (DH, 2005). COPD represents a significant problem to the Wirral PCT in the North-west England. Data for the Wirral area indicates that there are higher levels of undiagnosed COPD patients compared with other parts of England. Assimilated data from general practices through the Quality and Outcomes Framework (QOF) suggests a COPD prevalence rate of 2.27% in Wirral (as of December 2006), where individual practice prevalence varies from 1.0% to 5.4%. The financial burden of hospital admission and treatment is high; COPD represents one of the most common causes of hospital admission and costly inpatient conditions to treat (Healthcare Commission, 2006). It is estimated that the annual direct medical cost burden to NHS Wirral represents £6.2 million (Wirral PCT, 2007), representing the annual costs of care for hospitalisation due to exacerbations. NICE guidelines indicate various types of intervention have been implemented to reduce hospital admission, length of stay, for example, early discharge, care at home and pulmonary rehabilitation to improve quality of life in patients with COPD. Wirral Integrated COPD strategy incorporates a broad range of services designed to improve diagnosis, assessment, monitoring and support of people with COPD. Wirral Integrated COPD Strategy combines Spirometry testing, a COPD Oxygen Service (COPD/O2) and a Primary Care Assessment Unit (PCAU) with the objective to reduce hospital admissions, improve the consistency of COPD services, service delivery and access to people with COPD. The Wirral Integrated COPD/O2 service provides a multidisciplinary service to care for and provide treatment for patients with COPD to their homes. Other integrated services include a pulmonary rehabilitation programme that promotes and supports self-management; an oxygen assessment service and ongoing support for people on long-term oxygen and effective links with palliative care services for end of life care.
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3. Aims and objectives To evaluate the COPD / O2 service and the Primary Care Assessment Unit (PCAU). The evaluation will identify:
How the COPD/O2 service contributes to COPD management;
The quality and responsiveness of PCAU;
How the PCAU supports the integration of existing primary care and other social care providers.
The evaluation is underpinned by a number of key objectives, including the need to capture:
The experiences of patients referred to COPD/O2 service to determine how this contributed to overall COPD management;
The service provider (e.g. GP, health professional) experience of how COPD/O2 contributes to overall COPD management;
The experience of patients referred to PCAU to determine whether this provides a quality, responsive service for COPD patients in urgent need of assessment;
The service provider experience of whether the PCAU provides a quality, responsive service for COPD patients in urgent need of assessment;
The experience of patient referred to PCAU to determine whether this supports integration between existing primary care.
4. Methods The evaluation consisted of a mixed methods approach encompassing quantitative methods and qualitative methods. (i) Service User Questionnaire All 461 service users provided through the client list were sent a questionnaire in the post for selfcompletion. The questionnaire assessed levels of satisfaction with aspects of the COPD/O2 and PCAU service including management, diagnosis and aftercare. To ensure a maximum response rate, two mail shots were conducted in March and May 2010. A total of 189 surveys were returned, representing a response rate of 41%.
(ii) Focus groups (COPD / O2) – Service users Four focus groups were conducted with service users from the COPD / O2 list provided, comprising a total number of 22 participants. The focus groups took place at three community locations across the Wirral area to ensure convenience and optimum involvement. Participants included those living with mild to severe forms of COPD, and varied by age and gender. All participants were currently receiving or had previously received care from one or more aspects of the COPD / O2 service. 6
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(iii) Semi-structured interviews (COPD / O2) - Service users Eleven in-depth, semi-structured interviews were conducted with service users in their homes where possible or over the telephone when more convenient. The interview sample consisted of participants who varied in COPD severity and oxygen dependence, age and gender. All participants were currently receiving or had previously received support from one or more aspects of the COPD / O2 service.
(iv) Focus groups (PCAU) - Service users Due to the limitations of the client list, one focus group was conducted with service users from the PCAU list provided, comprising four COPD patients who had been through PCAU. This took place at a community location convenient to the service users. Participants varied in their COPD severity, and were represented across different age groups and by gender. All participants had visited the PCAU previously; number of visits varied from a minimum of one to a maximum of three.
(v) Semi-structured interviews (PCAU) - Service users Eight in-depth, semi-structured interviews were conducted with service users in their homes where possible or over the telephone when more convenient. The interview sample consisted of participants who varied in COPD severity and oxygen dependence, age and gender. All participants had visited the PCAU previously; number of visits per participant varied from a minimum of one to a maximum of three.
(vi) Semi-structured interviews/focus groups (PCAU and COPD/O2) - Informal carers Informal carers have emerged as an important voice in the evaluation. They have offered their perceptions, as carers living with the service users, of the PCAU and COPD / O2 service. Four semistructured interviews have been conducted with informal carers and six informal carers have been involved in the focus group sessions.
(vii) Focus groups (COPD / O2) – Staff Two focus groups were conducted with staff employed as part of the COPD / O2 team. A total number of nine staff attended the two focus groups. Participants had varying levels of expertise of working in the service, representing a broad cross section of staff including respiratory nurse specialists (n=4), a respiratory support nurse, a senior respiratory specialist, a physiotherapy assistant, a clinical support worker, and a support secretary.
(ix) Interview (COPD / O2) - Staff To examine the staff experiences of the service in more detail, an additional interview was conducted with the manager of the COPD / O2 service.
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(ix) Focus groups (PCAU) - Staff Two PCAU staff focus groups were conducted with staff employed as part of the PCAU team. A total number of 8 staff attended the two focus groups. Participants had varying levels of experience working in the PCAU unit. Participants comprised both nurse practitioners and GPs working on the unit.
Table 1 details the methods which were planned for phase 1 of the evaluation against those that were achieved.
Table 1 - Methodology - Phase 1 - Planned and Achieved Outcomes
Planned
Achieved
User questionnaire: response rate unspecified
189 completed service user questionnaires.
4 focus groups with service users (COPD / O2)
4 focus groups with service users (COPD /O2)
4 focus groups with service users (PCAU)
1 focus group with service users (PCAU)
8 interviews with service users (COPD / O2)
11 interviews with service users (COPD / O2)
8 interviews with service users (PCAU)
8 interviews with service users (PCAU)
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Table 2 - Phase 1 - Methodology - Phase 1 - Unplanned but additional work carried out and outcomes
Unplanned
Achieved
Informal carer perspective
4 semi-structured interviews completed with informal carers/involvement of 6 informal carers in focus groups.
Interview with staff
1 additional interview conducted with the manager of the COPD / O2 service.
The second phase of the study The second phase, interviews are being conducted with external stakeholders. Participants were GPs, WAPS nurses, community matrons and COPD exercise groups. 5 interviews with external stakeholders were conducted. The second phase of the research was conducted between July to August 2010. The followings were carried out :
Transcription and full analysis of phase 1 qualitative data.
4 repeat focus groups with COPD patients.
1 repeat focus group with PCAU patients.
2 repeat focus groups with COPD/O2 staff.
1 repeat focus groups with PCAU staff
1 interview with PCAU GP
1 focus group with external stakeholders
1 focus group with WAPS staff
1 focus group with community matron
1 email from a GP
Analysis of all qualitative data for the second phase.
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5. Data analysis
The questionnaire data has been inputted into SPSS and statistically analysed to identify significant findings (see section 6) using descriptive statistics. The interviews and focus groups were transcribed and thematically analysed in the NVivo software package to identify significant findings (see section 7).
6. Findings – Satisfaction Survey
We have carried out a client satisfaction survey of for both primary care assessment unit (PCAU) and COPD oxygen service team. We send out 461 questionnaires and out of these 189 (41%) completed questionnaires were received. The participants mean age (SD) was 72.4 (9.3) and age range was between 43 to 94 years. Gender response was Male = 96 (50.7%) and Female = 93 (49.3%). 163 (86.7%) participants received care from the Oxygen service team. 141 (75%) participants received care from the primary care assessment unit. 125 (66.5%) received care both from Oxygen and PCAU services. We carried out the satisfaction survey using a Likert type of questionnaire and participants were asked for each question to respond - very unsatisfied, unsatisfied, neutral, satisfied and very satisfied.
6.1 Efficiency of the service Questions
Unsatisfied/
Neutral
Satisfied/Very satisfied
Very unsatisfied The start of care with the COPD/O2 service was efficiently managed.
18 (9.6%)
9 (4.8%)
145 (77%)
The start of care at PCAU was efficiently managed.
9 (4.8%)
15 (8%)
142 (75.6%)
9 (4.8%)
29 (15.4%)
126 (67%)
8 (4.2%)
31 (16.5%)
120 (64%)
The time taken to be seen by the PCAU unit was just right.
The service I received at PCAU was efficient for COPD patients who require urgent need of assessment.
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6.2 Quality of care Questions
Unsatisfied/ Very unsatisfied
Neutral
Satisfied/Very satisfied
The staff at the COPD/O2 service were careful to check everything about my respiratory problems when they started to provide the service.
11 (5.8%)
12 (6.4%)
145 (77%)
The staff at PCAU were careful to check everything about my respiratory problems when they started to provide the service.
9 (4.8%)
18 (9.6%)
138 (73.4%)
10 (5.4%)
14 (7.4%)
147 (78%)
12 (6.4%)
23 (12.2%)
129 (68.7%)
11 (5.8%)
24 (12.8%)
130 (69.1%)
15 (8%)
33 (17.6%)
112 (59.6%)
16 (8.2%)
36 (19.1%)
107 (56.9%)
The team at PCAU did their best to provide me with the appropriate treatment to stabilise my condition. The team did everything that they could to make me well again. The care I received with the PCAU service was just about perfect. I am happy with the amount of recovery I made while receiving care with COPD oxygen service. I am happy with the amount of recovery I made while being cared at the PCAU.
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6.3 Self-management and provision of information Questions
Unsatisfied/ Very unsatisfied
Neutral
Satisfied/Very satisfied
11 (6%)
27 (14.4%)
130 (69.2%)
13 (8%)
12 (6.4%)
147 (78%)
The respiratory team provided me with all the information I wanted to know about the care I was receiving.
10 (5.4%)
23 (12.2%)
139 (74%)
The specialist at PCAU explained the reasons for any treatment or action in a way that you could understand.
17 (9.1%)
16 (8.5%)
138 (73.4%)
9 (4.8%)
9 (4.8%)
148(78.7%)
9 (4.8%)
13 (6.9%)
146 (77.6%)
I feel much better in myself and manage my condition after started with the oxygen service. The respiratory team provided me with all information I wanted to know about my condition
6.4 Treated with confidence, respect and dignity Overall, I felt I was treated with respect and dignity by the COPD Oxygen service team. I had confidence and trust in the staff examining and treating me.
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6.5 Teamwork and communication Questions
Unsatisfied/ Very unsatisfied
Neutral
10 (5.4%)
26 (13.8%)
134 (71.3%)
10 (5.4%)
34 (18.1%)
117 (62.3%)
11 (5.7%)
14 (7.4%)
147 (78%)
11 (5.7%)
18 (9.6%)
145 (77%)
Unsatisfied/ Very unsatisfied
Neutral
Satisfied/
13 (7%)
18 (8.5%)
132 (70%)
10 (5.4%)
28 (14.9%)
120 (63.8%)
12 (6.4%)
12 (6.4%)
147 (79.3%)
Satisfied/ Very satisfied
The team worked together and knew what each other was doing. I was well informed by the staff from the primary care assessment unit about the next step of care for my condition. I feel able to talk to the team about any problems or worries I had.
I felt as involved as I wanted to be in decisions about my care and treatment.
6.6 Environment Questions
In the time I spent in the department, I found it a clean and comfortable place to be.
Very satisfied
6.7 Follow-up treatment after discharge
The follow-up treatment I received after discharge was impressive.
6.8 Provision of equipment I had all the equipment that I need to manage my respiratory problems.
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7. Findings - Interviews and Focus Groups
7.1 Service users (COPD / O2) The interviews and focus groups with service users identified aspects of the COPD / O2 services, which positively supported those participants living with COPD. These included perceptions of: reduced hospital admissions, increased awareness and understanding about COPD and their treatment, increased ability to self manage and improved freedom and control in accessing services.
Hospital admissions Service users reported that the on-going support that they receive, through personal visits at home and/or telephone contact has helped reduce the frequency with which they are admitted to hospital. However, it was difficult for service users to determine if these had been a direct result of the COPD / O2 service itself or as part of the wider health and social care support in place. A combination of Community Matron support, the Wirral Admission Prevention Service (WAPS), the respiratory nurses and elements of the pulmonary rehabilitation service had all contributed to reduced hospital admissions. I: so the COPD service helps you stay at home? R1: oh yeah R2: yes R1: without a doubt. Service User focus group Reduced hospital admissions were partly attributed to the increased ability to self manage brought about an increased awareness and understanding of their condition resulting from education provided through the pulmonary rehabilitation service and specific visits from physiotherapists, respiratory nurses and community matrons. I: So has it got better in terms of needing to go to the hospital? C: Yeah, yeah, yeah. You see I look after myself a bit better than I did do. Service User interview Additionally, service users now felt more able to approach these professionals when they encountered a problem. As opposed to contacting the emergency services, service users now made direct contact with their WAPS nurses, often ensuring that the problem could be identified and resolved without hospital admission. “Well, the WAPS nurses is if you need somebody quick, and they’ll come directly from the hospital and they’ll see whether you’re bad enough to go in, you see, or they’ll try and sort you out at home. There’s basically a thing now where they’re trying to keep everyone at home, which is lovely.” Service User interview 14
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Awareness and Understanding Service users felt that they had acquired an improved sense understanding and awareness of COPD because of using the service. Education (delivered via informal support and formal information sources) provided by the respiratory nurses and the pulmonary rehabilitation team had contributed to a better understanding of COPD: the various symptoms, the progressive nature of the disease and the likely impacts upon everyday life. I: So you feel pretty informed? R1: Oh yes and you feel more confident don’t you? R2: Oh yes without doubt R1: That does help such a lot, it’s an understanding and if you understand it then you have got a better chance of managing it. Service User focus group Service users reported that they had feelings of anxiety and confusion when first diagnosed with the disease, arising out of a fear of the unknown. The education sessions provided as part of the pulmonary rehabilitation programme and the one-to-one support received from the respiratory nurses brought about an improved understanding and awareness amongst service users, reducing those levels of tension and anxiety. Although some service users and carers said they had received booklets or leaflets on COPD, they relied heavily on the informal input they received from nurses and physiotherapists during clinic and home visits. “because once somebody tells you that you’ve got this and take these and you’ll be alright well that helps a lot and you understand that you’re not dying or anything, once you know that’s going on sort of thing” Service User focus group As a result of this understanding, the majority of service users now felt more in control of their condition and an improved sense of confidence. Importantly, service users felt that members of staff from the COPD / O2 service were approachable if they had any queries about managing their COPD symptoms and a number of participants had the ability to make direct contact with the team if they needed to. There remain, however, a minority of service users who do not feel that they have sufficient understanding of COPD, their treatment or the services available to them. It may be that these people are at early stages of contact with the COPD/O2 service, but their outstanding informational needs merit addressing. “R: I have no idea you know. It’s that machine, it is on 3 but is that normal when you first get it? Are most people put on 1? I: I am not even sure myself R: and what happens when you get to number 6? It is those sorts of things and you can’t ask them because you don’t know anything about it when you are there, because you have never seen the machine.” Family Carer focus group “Today I have learnt more about other people and what they are getting and I am missing out because I am getting nothing apart from oxygen.” Service User focus group 15
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Self-management Service users reported an increased ability to self manage their COPD symptoms. Here, service users reported that they received specific support in how to manage their COPD. They were given specific breathing exercise techniques, advice on how to operate their oxygen equipment or how to make necessary lifestyle changes. Service users reported that this brought about an ability to self manage their condition, enabling them to feel more confident in undertaking activities in and outside the home which they had previously felt that they were unable to do, including: housework, gardening and shopping. A sense of frustration and isolation (as a result of the restrictions brought about by living with COPD) was replaced by a sense of competence and an ability to undertake such activities. I: when the COPD nurses were in place did you notice an improvement? R: “well the improvement is that they haven’t had to come. They have left everything with the wife, me and my daughter and we manage fantastically.” Service User focus group “He is washing dishes. He is limited to what he can do but he will make a cup of tea now and that is a big step for us. I know it doesn’t seem very much but it is a big step.” Family Carer interview
Despite good input from a range of services, some participants continued to experience considerable limitations in their daily activities and social lives. This was distressing for individuals and their family members. Because now he is just not fit enough to do anything. I am taking him to the theatre on Saturday night and we are going for a meal first, he has got the oxygen bottle he can take with him and I said “do you think you want to go” and he said, “we will see how I am in the day”. So he has gone to having quite a good social life to him having none. Family carer interview For many participants, however, the support received as part of their COPD helped them to have a more positive outlook regarding their COPD. Many felt that they were previously burdened by the condition, which often led to feelings of social isolation and exclusion. Informal carers reported that those living with COPD often felt depressed and isolated because of the changes brought about by the unpredicted symptoms of COPD. Yet, the support received from respiratory nurses, WAPS nurses and the pulmonary rehabilitation team led to them feeling better informed and more able to manage their own condition. As a result, without being unrealistic about the effects of COPD, they began to perceive it as a condition, which they are more able to live with and continue to engage with their daily activities that were important to their overall quality of life and well-being. I: how have you guys benefited? What type of stuff can you do now? R1: you can go out, go on holiday R2: my wife takes me out in the car when I have got my oxygen with me. R3: do normal things like go for meals. Service Users focus group 16
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Independence Improved education and self-management was combined with participants receiving the most appropriate oxygen treatment. Prior to the support received by the COPD service, participants reported that they were receiving varying levels of oxygen and there was no formal mechanism in place for monitoring and reviewing the amount that they received. Initial visits from the respiratory nurses ensured that patients were receiving the correct amounts of oxygen appropriate for each patient. Additionally, these visits provided service users with necessary oxygen support equipment. Participants reported that being able to use the portable oxygen equipment enabled them to undertake activities that they previously felt unable to do. They were able to go out visiting friends, going for a drive, going for a walk, doing local shopping and going to the golf club (though not to play) were all examples of leisure activities that participants now felt they are able to do. “the liquid oxygen allows me to get out and do a bit of shopping, and I take an elderly auntie, she’s … 80 and I can take her out maybe once a week to a garden centre or something, for lunch, and I go to lunch with one of my friends,” Service User interview
Many participants now felt less dependent on others to help them undertake these tasks. Importantly, informal carers felt that the portable oxygen equipment improved the quality of time that they spent with their partner, enabling them to continue doing the activities that were important to them. Those participants who had access to and were able to use the portable oxygen equipment were more mobile and active within their local community and reported higher levels of independence. This was particularly evident in the Phase 2 focus group. “they’ve just told me that I can have portable oxygen just for walking because I walk to the local shops 10 minutes away but it takes me half an hour and I have to sit at 2 bus stops en route and she said that if I had the oxygen then i probably wouldn’t have to stop at all”. Service User Phase 2 focus group
This improvement was facilitated by the high standard of support the great majority of participants felt they were receiving from the company that installed the oxygen equipment and explained its use. Service users and carers found the service responsive and flexible. “They’ve been very good to me, the oxygen people. You’ve only got to ring and they’re there” Service User interview “I was told straight from the hospital that by the time I get home there will be an engineer there and it was all there and that was straight from being diagnosed” Service User Phase 2 focus group
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One drawback mentioned by participants at Phase 1 was that without identifiable links between oxygen provision services across the country, O2 users are unable to undertake overnight trips or go on holidays, as they are concerned about their oxygen supply. This seemed to have improved for several participants by Phase 2. R: we have just been away for a week and they delivered the intensity machine for the chalet and the backup of the oxygen bottles and the perambulator bottles I: So they do all that if you go on holiday? R: Yes, all you do is contact your COPD nurse and she does it for you. Service User Phase 2 focus group
Freedom and Control Service users noted the improved sense of freedom and control that they had when accessing and receiving services. Service users and informal carers felt that they had been involved in the decision-making process by members of staff from the COPD / O2 service who kept them regularly informed and aware of other services available. Service users felt in a position to manage the amount of support they received as part of the COPD / O2 service; appointment times, frequency of visits, location (at-home or at hospital), types of service received. Here, the flexibility of the COPD service was important in ensuring that support was tailored around the specific needs of the individual. Service users also felt they had more involvement in the amount of care that they received and more power to increase/decrease the care that they received. Service users felt that this enabled them to achieve a balance to ensure that they were not dependent on the service whilst still relying on support when necessary. “Luckily, I have never had to ring them. They used to call twice a week and then they stopped and started ringing every evening to ask how she was. It has gone now where they have left it and I have got the phone number and they are at the end of the phone if required”. Service User focus group By the Phase 2 focus group, ready access to the COPD / O2 service seemed fully established, with all participants reporting either home visits or phone contact when needed.
Care-at-home Participants reported positively about the provision of care they received in the home, although in Phase 1 of data collection they often found it difficult to distinguish between visits from the COPD / O2 service and the WAPS team or other services. Home visits were often organised around the daily routine of the service users, ensuring that it was convenient for them. Service users felt that at-home care provided them with a one-to-one, personalised service, which they did not receive when attending hospital/health centres. Home care also 18
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prevented the access barriers (transport; parking) made it difficult to attend appointments at healthcare centres and the hospital for follow-up consultation with their doctors. “Without them you have to ring up the doctors, try and get an appointment and in my case struggle to get up there, it’s a hell of an upheaval, it’s better to be at home with the nurses coming to see you.” Service User focus group By the Phase 2 focus groups, home visiting seemed be more consistently available for those patients who required it, though one service user stated that annual monitoring was insufficient. Continuity of care was well established and participants seemed more aware of which service they were accessing. “They ask when it is convenient to see you… what day and what time so basically you decide what day and time they come” Service User Phase 2 focus group
Participants felt that the home care provided more flexibility; in how much time professionals were able to spend at their home. This was seen as crucial in the management of COPD where changes were noted daily/weekly requiring more/less time to be spent with them during their visits. Importantly, the home represented a familiar environment for the service user; it was less threatening than the medical environment and is associated with fewer negative perceptions than the hospital environment. I: Do you think the continuity of having the same COPD nurse is important? R: I do think that’s quite important because if you’ve got a personal relationship it is a lot easier because every time you see them you’re not going through your life history they know your background so you’ve only got to deal with the latest problem R: Plus you would know if you were getting depressed or anything because she would be able to sense it. Service User Phase 2 focus group
One hospital setting in particular seemed to cause considerable concern among many, but not all, participants. “And I’ve since been in Arrowe Park over twelve months ago now, a couple of years ago, my husband was still alive anyway. But it was such a horrific experience I’d never go back in now. I’d go anywhere else but there, it was awful… filthy dirty.” Service User interview R1: I am not so keen on Arrowe Park though R2: I wouldn’t put a dog in it. That is being straight. Service Users focus group “I was the only girl on the ward and the others were all men, like next to me” Service User Phase 2 focus group But, “I have to say everything that Arrowe Park has done for Pat with respiratory problems- I trust them completely. You hear awful tales but we have not experienced that with them.” Family Carer interview 19
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Service users felt more able to make decisions regarding their care when they were in their own home, they felt more comfortable raising questions of healthcare professionals and it represented a more therapeutic environment when recovering from illness. Furthermore, the felt it was valuable for COPD nurses to see them in the context of their own homes and the challenges they faced in daily living activities. “Also they can see you walk upstairs and see how you do that and then take a reading well you cannot do that in the hospital because they haven’t got your home environment.” Service user Phase 2 focus group 7.2 Service users (Pulmonary rehabilitation)
Pulmonary rehabilitation is part of the COPD/O2 service but is discussed separately here we provide a brief summary of the many comments made by service users specifically about the course of the programme and the staff. The views of NHS staff are presented later, in section 6.4. Pulmonary rehabilitation is offered primarily as a six-week course where patients attend sessions twice a week. The course consists of both aerobic exercise and education sessions.
Duration Participants attended the course for a six-week period after being referred to the service through their respiratory nurse or GP. Most participants who started the programme completed it, with a stating that that they had missed a few sessions or dropped out. Those who dropped out felt that the exercises were too strenuous for them or they had access issues and could not reach the venue. One participant stopped attending because he found the exercises were too easy, given his current state of health and fitness. R: they give you things to do that you can’t cope with, it is the truth. The treadmill, up and down the stairs and it nearly kills you. I: did you see any improvement at the end? R: I quit. I went 4 times. Service User focus group I had a class … the people over the road go, man and wife, they help you breathe and you do exercise. I’ve been … but I’ve got no transport you see. Service User interview
Many felt, that by week six, they were beginning to realise the benefits in their overall health and well-being and that this needed to be sustained through active participation in the classes. R: Yes, I see it as going to the gym and on that basis it’s excellent, it’s physiotherapy that’s what it is that I’m going to, you know, except it’s not to build my muscles up it’s to increase my breathing my respiratory intake or whatever I: Do you find that it’s improving that? 20
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R: I think it has helped, it’s never going to cure it, it’s not like a broken leg that will heal, it will never cure it but I think it’s helped. Service User interview Those who participated fully felt that six weeks was not long enough and many wanted the course extended or to have the ability to re-refer themselves back into the course. Many participants felt very strongly about wanting to continue but raised issues of difficulties with motivation when left to self manage and continue the exercises at home. Many participants stated that they would be happy to personally finance further sessions if they were made available. I: What will happen once the programme ends, as I know it’s only a short-term programme? R: Well I would be disappointed really, because I would like to carry on Participants who did not go on to attend a non-NHS exercise group after pulmonary rehabilitation typically reported that they did not continue with exercise. “But one of the best exercises is stepping up and down on one-step, which I could do … and I don’t do that. I don’t use my weights; they just sit on the kitchen table and look decorative. I forget about them altogether.” Service User interview
Information and Awareness In the initial interviews and focus groups, a number of participants with COPD were unaware of the pulmonary rehabilitation course. Listening to the positive experiences of others, many wanted to engage with the service but had received no information/literature about the course. Others had received the information, but were unclear about what the course would entail, what exercises they would be engaged in and the likely benefits of engaging. Further work to disseminate the positive results of the service and more tailored information about the service would improve take-up (although we are aware that a waiting list is already in existence). Focus groups with staff in Phase 2 demonstrate their awareness of many of these issues, and some changes are already in place. For example, a more individualised exercise programme can be delivered in service users’ own homes if they are too unwell to attend the class. Staff members feel, however, that these people will miss out on the valuable social aspects of peer support of the course. Increased staffing by Phase 2 has also meant that an additional venue is being used; one which has better parking facilities.
Inclusion Criteria Some participants felt that the pulmonary rehabilitation programme was for those living with milder forms of COPD. There were a few examples of participants, in the first phase of data 21
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collection, who had been informed that they were unable to attend the course because of their COPD severity. This was despite those with severe forms of COPD feeling that they would benefit from the programme. An important issue here is that the course consists of both education and exercise. Whilst those with severe forms of COPD may have felt less able to engage in strenuous exercise, they could potentially have benefited from informative education sessions. This does suggest that some greater individualising of the programme offered would be beneficial. “In the end, they said there is no point bringing her because she can’t do anything.” Family carer focus group
Access For many participants access to services was a key issue. Engaging in the pulmonary rehabilitation (2 sessions per week for 6 weeks) requires that participants are within close reach of the venue and have access to reliable transport. For many participants, the transport links in and around the community were unreliable, and taxi journeys were expensive (even though there was an opportunity to re-claim these expenses). Others relied upon partners/informal carers to take them to the exercise programmes, yet this resulted in a dependence on others. A number of participants felt that expanding the number of venues where the sessions take place would be beneficial, possibly delivering the service through local community venues for ease of access. Progress in this area had been made by the second set of focus groups and it was clear that staff members were well aware of this issue. “I cut it short because the ambulances were letting me down, I was due to finish but I had only done about half of what I should’ve done“ Service User Phase 2 focus group Rehab-at-home Participants felt that the pulmonary rehabilitation service would be beneficial if it offered rehabilitation within the home. Some participants did not feel comfortable exercising within a group; others had severe COPD and were restricted to the home, whilst a number of participants voiced access/transport issues, which prevented them from attending. Participants felt that rehabilitation classes within the domestic environment would be beneficial. The home was a familiar and comfortable environment for participants where they felt they would be more willing to engage in rehabilitation. Participants felt that rehabilitation in the home would complement the rehabilitation classes and provide service users with more choice and a tailored programme of activity to suit their needs.
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Program Delivery All those that attended the rehabilitation classes felt that there was a positive balance between formal exercises and informal conversation/advice. The majority of participants felt that the classes were delivered at a pace that suited them; they were not expected to undertake anything that they felt unable to do; they were comfortable with exercising with other people with the same condition; and they were gently encouraged along the way. “There’s a set amount of equipment around the room so if you can’t walk then you don’t have to go on a treadmill they will give you something else to do so yeah it is tailored to what you can do and you don’t have to do any of it.” Service User Phase 2 focus group Some participants enjoyed, and felt they benefited from, a competitive element. I: Were you actually noticing an improvement? R: “Yeah because I could do twice as many, the first week I was there I saw this fella throwing this ball against the wall and did 150 so I thought that was a goal or setting point and I did 41 and I couldn’t breathe but I was doing 70 before I finished.” Service User Phase 2 focus group Participants reported on the friendliness of staff (e.g. physiotherapists) delivering the programme, and the familiarity that the staff developed with the service user (familiarity of using first names). This approach to delivering the programme made participants feel more relaxed and at-ease; they were made to feel as if the space was their own and this made them more likely to engage in the classes for the duration. “They are brilliant, they were smashing they would sit down with you and spend time with you whilst the other one is doing the class of something and they really do care and take an interest and it follows on twice a week so they do take an interest in you and how you’re feeling that day and if you’re bad they will test your blood.” Service User Phase 2 focus group Education and Awareness Participants felt that the rehabilitation programme made them feel more educated about their COPD, in their understanding of the disease and how to manage their condition better. Participants reported that physiotherapists would share their knowledge and expertise in an informal way, engaging with them whilst undertaking the exercises and giving them specific advice (diet, fitness, and lifestyle) which helped them in their overall management of their COPD. This was supported by specific information and advice sessions which took place as part of the pulmonary rehabilitation classes. These sessions were delivered by the COPD / O2 team (respiratory nurses), other healthcare professionals (in the Wirral area) and local community and voluntary groups (e.g. Wirral Lung Group). “Well I went on the pulmonary rehab course and that was 12 sessions and you go for an hour’s exercise on treadmills and bikes and then an hour’s teaching so they tell you exactly 23
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how the lungs work and how your whole system works and that has been really good for me.“ Service User Phase 2 focus group
Improved health and well-being No participants attending the pulmonary rehabilitation course reported feeling worse because of the programme, though several did not complete the course because they felt it was not good for them. “It felt alright for half an hour but for the following 3 days you could hardly move I was stiff as a board so it was doing me no good at all.” Service User Phase 2 focus group A small number of participants reported no change in their health and well-being status, but often considered that this was positive, given the nature of their illness. “You have got to be realistic. When you have got to our age and you are ill like that you are not going to improve because the ravages of time on your body are not going to let you improve. But what you want to try and do is maintaining what fitness you have got rather than lose any more.” Service User focus group The majority reported significant improvements to their overall health and well-being. For some, this was an actual improvement in physical fitness (walking for longer period, less breaks when doing the housework, ability to walk up and down the stairs). “The average recovery time from coming off the treadmill is between 4 and a half and 5 minutes, for me it was 2 so obviously it was doing me good.” Service User focus group Others felt that the ability to do more was brought about by a more positive state of mind, a renewed sense of confidence and the determination to do things for themselves. For many, the actual exercises themselves brought about a sense of engagement and stimulation to the brain (a challenge with long-term goals) which they often felt was underused when they were isolated within the home. For others, the socialisation aspect of the classes was the most valuable. It provided them with a reason to get out of the house and make new friends, which they felt was crucial to their well-being.
Sustained health and well-being The most important aspect of sustainability that was raised was that participants reported an increase in confidence and knowledge about where their own limits were i.e. how much walking or exercise they could do before they felt breathless or uncomfortable. We hope that this would encourage patients to be more confident to increase activity levels after the course has been completed. Despite this though, there was little actual evidence to suggest that improvements to individual health and well-being were being sustained in the long-term. Participants reported 24
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that they were encouraged to continue the activities at home and were provided with an exercise program and the necessary equipment to do so. Yet there was no formal follow-up, and few participants continued the exercises at home and so the health and well-being benefits were not sustained in the long-term. Problem is that you do not continue with the exercises once the course has finished – just goes “out of the window” – not motivated to carry on. Service User telephone interview
Some participants reported that they were signposted into other exercise classes that were operating in the local community (Wirral Lung Exercise Group and Breathe Easy), enabling them to realise benefits in the long-term. These groups were highly valued by those who attended. “I mean some of the people that go to that course can hardly walk, let alone exercise. They are really bad. But it has given them an excuse to get out of the house and quite a few ladies are on their own and have got no partners and they just come there to have a natter and a cup of tea.” Service User focus group “You need to keep exercising to get a benefit. That is why I go to the Breathe Easy but you do have to do it a bit more often than once a week.” Service User focus group
Others did not know of these community-based groups and felt as if there needed to be something after the six-week course to ensure that they did not return to their state prior to the rehabilitation. There was greater awareness of the non-NHS exercise groups in the second phase of interviews, with a high number of participants choosing to attend.
Anxiety Anxiety and panic attacks are associated with breathing difficulties were raised in most of the focus groups and interviews. Participants welcomed the support and guidance they were given by the COPD / O2 service, the pulmonary rehabilitation team and the WAPS service, which helped them to control their symptoms. This advice may have helped them to cope with the disease and contributed to reduced hospital admissions for some participants. “It frightens you and that is losing your breath and everybody must agree- if you can’t breathe then you get frightened and you are ten times worse then”. Service User focus group “Originally, it was at the rehab they were teaching you how to relax and how to relax with breathing problems is so simple you just need to sit quietly and breathe in and exhale and get your breathing under control”. Service User Phase 2 focus group
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7.3 Service users’ Primary care assessment unit (PCAU)
PCAU Visit/Environment All participants reported positively about their experiences of visiting the PCAU. Waiting time before being seen by a nurse varied from under ten to thirty minutes, though participants reported that it was usually less than ten minutes. Time before being seen by a doctor varied from ten to sixty minutes, though it was almost always less than thirty minutes. Duration of time spent in the PCAU varied from one to eight hours (between arriving at the PCAU and arriving at an outcome). The longer times may well have been caused by delays in finding a bed. The result of their visit to the PCAU was either discharge or admittance to hospital. Importantly, although one family carer questioned whether discharge had been the correct decision when her relative was subsequently readmitted, all participants were satisfied with the outcome of their visit. “It has been very good like but it is getting a bit much now of 7 weeks going up there with him. And you think why do they keep sending him home like this if he is not right?” Family Carer interview R1: On the Saturday we got there about dinnertime and they let me go home at night about 10pm as long as my daughter was with me because I lived on my own I: do you think you were in the unit for too long? R1: No they were smashing R2: They won’t let you go until you’re right R1: I was over the moon you know they looked after me whilst I was there and they kept coming back and asking if I was all right and had me on oxygen and everything. Service User Phase 2 focus group The environment of the PCAU was seen as an important factor for many who passed through the unit. Many felt that the unit was clean and modern with up-to-date facilities. As a result, it enhanced patient’s experience, resulting in them feeling more comfortable and relaxed. For many service users the unit was also peaceful and quiet, which contrasted with the pressured environment in A&E. This helped them to cope better to reduce the levels of anxiety and tension, which are common problems for patients suffering with acute exacerbations of COPD. “Clean and modern. Puts you in a positive mood when you go in. Environment is important.” Service User interview
Reduced Hospital Admissions In many cases, participants felt that the PCAU prevented unnecessary hospital admissions. A number of participants reported that they had previously been admitted to hospital because of 26
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attending A&E. Here, service users felt that the provision of specialist COPD support at the PCAU led to a more accurate diagnosis, which was more likely to lead to a discharge than a hospital visit. Those living with COPD often reported that they became frightened and concerned when experiencing breathing difficulties. On previous occasions, this had led to attendance at A&E and a likely hospital admission. These instances were now resulting in attendance at the PCAU, and increased likelihood of discharge. “No point in keeping me in for the sake of it. In A&E they would have definitely kept me in.” Service User interview “But now it’s only since the unit… the ones the nurses that come to our house I said to them that now and again I get a panic attack and they said to just sit on the end of the bed and don’t worry… but you do and they said to put your hands on your knees and throw your stomach out and then bring it back in and it does help.” Service User Phase 2 focus group
Specialist Care Participants reported that they were more likely to receive specialist care when they visited the PCAU than when they passed through A&E. Participants felt that the PCAU was a specialist unit set up specifically for those with COPD; interestingly, they did not associate the unit with the treatment of other conditions. Participants reported that all nurses and doctors displayed specific knowledge of COPD, often drawing upon their case history to arrive at an accurate diagnosis and decision to treat. The application of COPD-specific knowledge was important as it provided comfort to the service users, who felt more secure being treated by somebody who they perceived as being knowledgeable about their condition. “It is was marvellous - they know exactly what is wrong with you as they are COPD specialists not like in A&E where everybody with all sorts of problems are being seen. They also seem to know about your history.” Service User interview
Person-centred Care Service users felt that the PCAU provided person-centred care. This contrasted with their experiences of A&E. In A&E, they felt as if they were another patient, being processed through the system. In the PCAU, they felt as if the nurses/doctors were able to spend more time with them and deliver one-to-one care. “it was much quieter and she seemed to have more attention it wasn’t bedlam put it that way it was very quiet and very calm, there was enough staff there so you had enough attention”. Family Carer interview
In A&E participants reported lengthy delays in seeing a nurse/doctor and receiving diagnostic tests. When visiting the PCAU they were seen immediately and vital measurements were recorded. In the PCAU unit, they felt that they were treated as an individual; being provided 27
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with a separate waiting area and a bed if required. Importantly, the carer (partner, spouse) was allowed to stay with them during the duration of their stay in the PCAU, providing a source of emotional support to the service user. All service users felt informed and aware at each stage of the assessment process. They felt that both GPs and nurse practitioners provided them with the time to talk to them; discussing why they were there and what would be happening whilst they were in the unit. Importantly, they discussed any decision to treat with the individual; explaining why they were being admitted to hospital or discharged home. Service users contrasted this with A&E, where they were provided with little one-to-one support from staff, being passed through a hectic and pressured environment and where they felt uninformed about the process. “I was over the moon you know they looked after me whilst I was there and they kept coming back and asking if I was alright and had me on oxygen.” Service User Phase 2 focus group
After care and Support Participants reported receiving aftercare and support as a result of their admittance to the PCAU. This support was put in place immediately following discharge. The types of support put in place included: respiratory nurses, community matrons, WAPS nurses and oxygen support team. “I had the follow-up from the WAPS nurses. Now they are wonderful. I thought they were very, very good. I had them for about six weeks, but then I got a letter to go and see the consultant.” Service User focus group R: So the guy came with the oxygen and went through everything I: Did he explain everything when he came round, was he good? R: He was yeah he was very patient and he answered everything and went through everything I: So you felt a bit more aware after that? R: Oh yeah, I would not have had a clue but it is still scary. Family Carer interview A very small number of participants felt they had not received sufficient support on discharge from PCAU. It is unclear why the WAPS team was not involved. “No but I have to say afterwards I had a nurse from the COPD team I had a couple of visits from them I mean people have come out and double checked but it was a good week or two.” Family Carer interview Although sometimes daunted by the equipment and treatment required, all participants reported positively about their experience of the aftercare received; the interpersonal skills of nursing staff, levels of communication from the nurse and the feelings of trust and reciprocity that they developed with members of the aftercare support team. “The WAPS nurses come to your house, and as Bill said, they’re friendly with you and after a while they become part of the company in the house. They talk to you like friends.” Service User focus group R1: Yeah. Well that’s what the nurses are for. They are looking after you as if you were in hospital. When you’re in hospital you get the doctor comes to see you … maybe … not every 28
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day … they might want to take your blood one day … well, that’s what those nurses do at home. I: And they’re very friendly? Well, what makes a good member of staff, they turn up at your door, these nurses, what makes them … is it because they’re so friendly? R1: They know what they’re doing. R2: They’ve got time for you. They come in and sit down and talk to you and ask you how you feel, is there anything you need? Service Users focus group Some carers would have welcomed more guidance at the point of discharge the first time oxygen was prescribed. “I think someone should come when the patient is here to be honest because we weren’t sure on some things, just little things”. Family Carer interview
All participants felt that the aftercare received was crucial to how successfully they managed when living back at home. Returning to the home environment, they are often most vulnerable and feeling lonely and might lead to re-admission where establishing the most appropriate support during the first weeks after discharge is crucial. Participants felt a peace of mind and security when the aftercare support was in place. “The WAPS team comes in if you are vulnerable and they will refer you for the weekend or the evening. If you come out of hospital, she used to come every month but since that bad time, she has been very regular with me and keeping an eye on me. But I am gradually coming out of it you know? And they ease off me see. I have been really looked after in the last 9 months or so. “ Service User interview
After the service user was deemed able to self manage, the nurses reduced their visits, ensuring that other services were in place to support the service users. This included other healthcare professionals (such as the community matron) as well as any relevant voluntary and community sector organisations. Participants generally perceived this to be a well coordinated system. I: Did you have the WAPS nurses when you came out of hospital? R1: I did yeah R2: I had the WAPS nurses and they were coming everyday and then after a while it was every other day R1: Then they ring you up to check on you R2: Yeah R1: Then they transferred me to the community matron. Service Users Phase 2 focus group Transfer to Community Matrons Once participants’ treatment was in place and they were medically stable, those with ongoing health and social care needs were transferred to the care of Community Matrons. The Community Matrons are perceived as offering a very high level of support when needed. 29
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I: where as with the assessment unit did you go straight in? R: I didn’t know what it was to be honest. My matron was in with me, she is brilliant yeah. I: so she was there at the time R: she was waiting there for me. As soon as I go into hospital she is there. Service User interview Whilst not necessarily COPD specialists, Community Matrons were the first point of contact for many services, including medication and resources such as scooters and stair lifts. They provide continuity and a link with the participant’s General Practitioner. R: The matron knows more about my condition than anyone else. I: so that will always be your first point of call? R: yeah. They have got more powers now. They can write prescriptions now you know? Which is a good thing. Service User interview Coordination with COPD / O2 service Participants requiring oxygen at home or with significant COPD-related health needs had access to the COPD / O2 service. This was highly valued for the professional skills of the staff and their friendly manner. R: I think mum feels like she has a friend who she can ring for anything medical and things like that I: Do you think your mum would benefit from having these nurses coming in still and regularly? R: Probably once every month or 6 weeks I don’t think it would do any harm or even just to ring her to check everything is going ok. Family Carer Interview Some participants did not seem to have any long term support after the WAPS team ceased contact. It is possible that they were not seen as requiring on-going support, or that this is a transitional stage until the COPD nurses have worked through their full case load. I: and what happened when you came home? Did you have nurses coming in? R: nothing I: do you have a community matron? R: no I: or any COPD nurses coming in? R: no Service User interview All participants in the Phase 2 focus groups either had or were anticipating access to a Community Matron or members of the COPD / O2 service. This was either through home or clinic visits or by telephone.
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7.4 Staff (COPD/O2)
Aims and Objectives The COPD / O2 team consists of nursing staff that focus on COPD management, oxygen management and pulmonary rehabilitation for patients with chronic conditions. The service manager clearly articulated the service aims. “one was to review all existing patients on oxygen on the Wirral to make sure that the prescription matched their need and that they were appropriate and that was an ongoing management so any new patients that needed oxygen were to be assessed by the team and any existing patients should have a reassessment, all patients on oxygen should have a 6 monthly review long-term. From a COPD point of view the overall aims of the PCT was to improve the overall quality of the COPD management but also to, several things really, initially it was to try and find the missing millions of patients who its known that there are probably as many people who have undiagnosed COPD as have diagnosed COPD.”
Within this remit, the team aims to provide education and management of COPD, as well as education on the use of oxygen equipment, inhalers etc. The service is intended to support all patients across the Wirral who use oxygen at home, as well as newly diagnosed patients with mild to moderate COPD. Those patients can then benefit from education and medical assistance that will enable them to self-manage their COPD and slow down progression of the illness. In reality though, the service also has considerable workload from those patients with more severe COPD who need medical input. There is some lack of specificity about who the service is targeting. As the service manager identifies “Although the aim of the team from what I said about the service model was actually the more mild end of the spectrum. So the mild and moderate patients, so that we could work with them and try and stop them becoming the severe. You might not stop their lung function declining but you could certainly make sure they are on the right treatment and have the right education and that they are able to self-manage much earlier in the disease progression really. But my incline always was, and I did say this at the time, was that the ones I suspected that the GPs would want to refer would be the severe end of the scale and to be absolutely honest with you, they are the ones who really you do have an impact in terms of their quality of life.”
As the service is still relatively new, patients across the Wirral who use oxygen at home are all in the process of being contacted to ensure that their oxygen needs are being met appropriately.
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Patient Centred Support The needs of the patient came across as leading decision making and planning in the service. Patients will either attend the unit (which is well located with easy parking) or respiratory nurses will undertake home visits. The number and frequency of visits varies dependant on the patients and what they require. The staff working for the COPD / O2 service aim to provide a service where informal carers are involved. When the patient gets to the stage where they feel they are self-managing, a treatment plan is in place or they have been referred to the appropriate services, they will be referred back to their GP or community matron. It is a joint decision between the patient and nurse. “You try to make them independent from health professionals really as far as possible I mean they should have their GPs and practice nurses which hopefully should always be there.” COPD / O2 Staff Phase 2 focus group “J… is kind of leading on the COPD things a bit, she’s starting to follow up patients so if they issue a self management plan to follow up and see what they are doing and also contacting their GPs to find out how many courses of antibiotics they have had and if they have had any admissions so we can see how well it is working.” COPD / O2 Staff Phase 2 focus group
The team are encouraged to spend as much time as necessary with their patients. Sometimes this can be 15 minutes, sometimes this can be over an hour. The job of the respiratory nurses is a combination of task-oriented work (e.g. blood testing, teaching patients to use equipment, and spirometry) and those aspects of care delivery less easy to measure (the education, the encouragement, the conversation) which are important aspects when delivering a personcentred services. “It’s more about what the patient needs really if the patient needs longer than we give them what we can and very often with this type of patient it is about breaking things down into prioritising into what’s most important in dealing with that patient and if time is short then rescheduling another appointment it’s all about the patients needs really. “ COPD / O2 staff Phase 2 focus group
Early diagnosis and Intervention Staff reported that they have made a significant difference to the lives of people with COPD and those using home oxygen. Before this service, being set up patients did not necessarily have access to such specialist nurses at an early stage of diagnosis. Those with home oxygen needs may have gone unchecked for long periods resulting in lack of support, over or under use of oxygen based on misinformation about the benefits or risks of using the correct amount. “I did proper assessments with them, proper walking with them, you know? With and without oxygen, a proper assessment of whether they can use it and then whether they will use it 32
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because some patients we assessed could use it but there is no way they will be seen outside the house with an oxygen cylinder. We are trying to match it to people’s needs really and that is the aim.” Service Manager Interview
Optimising Treatment One role for CPD / O2 staff is to ensure that service users are on the most appropriate treatment available and that they are using it effectively. Some service users had a wide range of treatments which did not always seem to be used appropriately. The need for treatment optimisation was identified by a member of the WAPS team. “So they may have this nice little set of inhalers with the short-acting, the long-acting, the steroid or combined or whatever and they come out of the hospital with different ones. They are all doing the same but nobody has said to them “don’t take those ones now”, they are sitting there with a vast array of inhalers and they wonder why they are shaking.” The COPD / Team observed understanding their medication and being able to use it correctly as important to service users’ self-management and independence and as well as their health.
Patient Caseload As the service is developing it is also growing with the team acquiring more patients (either through referrals or through contacting patients through the oxygen client list). This growth has meant an increased number of patients waiting to go on the pulmonary rehabilitation course, which despite a recent addition to their team has meant patients having to go on a waiting list. As part of the growth and development of the service, the nursing team have undertaken awareness raising in local practices and GP surgeries concerning the service and this has also increased their client load. R: we had to go out there and introduce ourselves to the doctors so they knew where to refer to. But it has picked up. R: we have picked up quite a lot of COPD issues from the oxygen side and when we do the oxygen review we have a look at that.. I: and have you noticed the effect of doing that? Have you had more referrals coming in? R: we are now. To start off with it was a bit slow but it has picked up quite a bit. I: so it is GPs you have been to? R: yeah practices. R: and talks have been given to matrons and community nurses. R: because you can’t really separate the two in a way can you? If they are COPD, not all the patients are, but if they are you are doing a COPD review and probably scheduling to go back and do some more work with them and check inhaler technique and things, optimising medication and so on. COPD / O2 staff focus group Staff also spoke of further plans to expand the service, for example by introducing evening classes for people in early stages of COPD who are still working. 33
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“we’ve always tried to promote this idea of seeing them earlier so we’re really trying to push that side of things trying to move towards having group sessions for patients who are newly diagnosed or milder patients maybe early evening sessions to try and capture those who perhaps still work or have child care responsibilities.” COPD / O2 staff Phase 2 focus group
Pulmonary Rehabilitation One aspect of the COPD/O2 service is the provision of a pulmonary rehabilitation course. Staff members report that this is a well-received course with a very low dropout rate. They are aware of patient feedback requesting that the course is extended beyond six weeks but do not currently have capacity to deliver this. They are also aware that some people are very resistant to this type of class. “I mean some people do drop out because they are having an exacerbation while they are doing the programme but it is always so well evaluated and so popular. It is getting people to engage with it that are the hardest part, either they don’t like the idea of a group session or they just don’t think they can manage it but there are very few people who can’t manage it to some capacity”. Service Manager Interview
Staff reported that they are very aware of patient needs in terms of the pulmonary rehabilitation course. For most patients the course consists of two sessions each week for six weeks, but where staff feels a real benefit is just beginning to develop towards the end of a course, the course could be extended. The respiratory nurses have identified the perceived benefits of the pulmonary rehabilitation as being that people feel feeling better in themselves; they are more confident; more able to do things around the home - activities of daily living; an increased independence; and socialisation. The team are very aware of the limitations of pulmonary rehabilitation identified by patients in section 6.2 above, and are actively taking steps to address them where possible. “There is no follow-up. They are monitored for the 6 weeks and encouraged to do the exercises at home but there is currently no follow-up after this to see how they are getting on. “ COPD / O2 staff focus group “Access can be a problem. Parking at Arrowe Park hospital is an issue for people. For those more severe patients they are unable to get to the service.” COPD / O2 staff focus group Additional courses are now running at more accessible locations, thanks to some additional staffing, and the waiting list has reduced from 6 weeks to 2 weeks. Close links have been established with the two community-based non-NHS exercise groups, and community venues for pulmonary rehabilitation courses are under consideration.
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Management and Training The COPD/O2 team come across as exceptionally enthusiastic, passionate, competent and knowledgeable. They see themselves as a strong and well-integrated team. “I’m not just saying it but we do work well as a team we really do I think a lot of the PR patients and people coming in see that and I think they get the vibes that everybody works well together. “ COPD / O2 staff Phase 2 focus group
Staff members spoke of a dynamic and approachable management of the service, which meant that they had freedom to make decisions in terms of delivering the most appropriate care for their patients. They have regular team meetings where suggestions are put forward and ways of working are discussed. These discussions are then used to adopt new and more effective ways of working. They are finding administration and paperwork increasingly burdensome and welcome the forthcoming appointment of an oxygen administrator who will absorb some of this load. The COPD/O2 team receive all the necessary training to enable them to fulfil their role. Staff had a range of background and experiences meaning some were better qualified than others in different aspects of the service. Where ongoing training was needed (e.g. in spirometry) they are encouraged to undergo the training and this was in place for staff members. Further informal training comes from a respiratory consultant in the Trust. Some concerns were expressed about likely limitations on funding for training in the future.
Outcomes – Reduced Hospital Admissions and Appropriate Care A reduction in unnecessary hospital admissions is an important aim of the service but again, it is difficult to determine evidence for reduced hospital admissions. The staff in the service hope to prevent crises from occurring and thus hospital admissions. Therefore, providing the right support along the way in term of education and awareness can help. In some cases necessary admissions may have been picked up that would not have done without the service (especially the oxygen monitoring) and therefore a straightforward examination of reduction is admissions is not appropriate. “PCAU deal with everything and one of their patient groups assures me that there are loads of them that happen to be COPD but they’re there to prevent admission directly they’re there to stop admission directly… the purpose of our service is not that it’s to do it through education, management through exercise through all sorts of things and also oxygen management and those 2 services may overlap but although the overall aim is the same to reduce admissions the way we do it is completely different.” COPD / O2 staff Phase 2 focus group 35
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Staff report the financial benefits of monitoring patients’ home oxygen usage. In some cases, oxygen equipment had been unused and not required by the patient in homes; in other cases oxygen was being unnecessarily used, considerably reducing a patient’s quality of life and at great cost financially to the primary care trust. “There is actually 50 patients who we know, sorry 70 patients who we know from product records who are 100% non-users of their oxygen and we have only just had that report and we are going to target them and look at them and see why they are not using it, can we take it away? It will be very interesting to see how many we can discontinue. There are a further 90 patients who are not using by between 95% and 99%. It is incredibly wasted resources on people who have got oxygen and don’t know what to do with it.” Service Manager Interview
Considerations for the Future A small number of issues arose from speaking to members of the COPD/O2 team that could be highlighted as considerations for future development of the service. Firstly, the respiratory nurses currently cannot prescribe. However, there are only two non-medical prescribers’ in the team at present. This has been blocked from prescribing by the primary care trust. It is possible the approval for prescribing needs to come from WUTH and not the PCT, as we are commissioning this from WUTH; they are responsible for the prescribing training and cost. The other staff could not prescribe anyway as they are not qualified to do so. They have to follow a complicated prescription process - faxing the request to the GP, waiting for the GP to act on that and then the patient actually receiving the medication. This can be frustrating for both the respiratory nurse and the patient. A second issue was that of access which could be a problem for patients. This has been addressed by running pulmonary rehabilitation courses at other, more accessible, venues. Finally, staff in the Phase 2 focus group raised the issue of on-going confusion over roles between the COPD / O2 service, the WAPS team and Community Matrons. It was felt that the care pathways needed to be audited and clarified, but that this would have to be carried out by the Programme Manager.
6.5 Staff (PCAU) Reduced Hospital Admissions
All staff felt that the PCAU was contributing to reduced hospital admissions. It was estimated that over 80% of cases result in discharge for the patient. This was higher for those with COPD admission. Of all PCAU admissions, between 15-20% are admitted with COPD problems. In a number of cases these refer to chest complaints and breathing problems. COPD is characterised by exacerbations and those suffering from COPD present with problems that can lead to early discharge – often issues related to tension and anxiety. The 36
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service is therefore seen as reducing capacity on other hospital-based services, specifically in the CDU and at A&E by ensuring a quick diagnosis and more satisfactory clinical decision. “I think that’s one of the biggest things that we’ve noticed here actually is that a lot of the admissions or a significant portion of admissions is down to poor communication and we are ideally placed to actually try and sort that communication problem and then discharge the patient home safely.” PCAU staff Phase 2 focus group
Service Awareness Whilst case numbers have been steadily increasing in the unit since it opened, PCAU staff still felt that there was a lack of understanding amongst other providers about the purpose of the service. Staff felt that there was a large percentage of service providers (GPs, community matrons, respiratory nurses) who were not aware that the unit existed. As a result, patients were not being directly referred to the unit; instead, they were passing through A&E. This was resulting in delays to the patient care. Staff identified a need to ensure that colleagues working in the community were aware of the service but also that they understood the aims and objectives of the service so that the referrals were appropriate (see below). Patients very often go through A&E because they ring 999 and come in by ambulance, so it is patient choice, rather than professional choice that leads them to end up in the A&E first. I: You mentioned there are specialized people who would benefit from knowing about the service, who does that include? R1: Specialist practitioners in the community really, specialist nurses, I suppose the community matrons as well - liaising with them a bit more. R2: Respiratory team as well, they are completely aware of us but I’m sure we could all gel a bit better really... communication. .. you can never have enough communication. PCAU staff focus group The PCAU team is planning to hold an open day or series of shorter events to promote awareness of the service among GPs, community matrons and other external stakeholders. “The commissioners have told us, they have gone to the GP forums and stuff but I think we probably need to push that again and to go out again and say what we do and what we can do for their patients to keep them out of hospital.” PCAU staff Phase 2 focus group
Patient Referral Since the unit was opened, it has expanded in terms of how many cases that they manage on a daily basis. This has steadily increased since the unit opened in August 2009. There is specific demand on the service at certain times of the day; at lunch-time and late in the afternoon. The majority of referrals come from A&E, GP referrals (through the Single Point of Access), the All Day Health Centre and the Walk-in Centre. Yet the quality of these referrals varies; often cases arrive at the PCAU that are not appropriate to them and the patient is sent elsewhere. There is a constant argument about what is and is not suitable for PCAU. Sometimes, this is based on the skills and background of the GP/NP working in 37
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PCAU so it goes both ways. PCAU staff felt that this was a result of these other services not having the depth of knowledge about what service the PCAU offer. Again it is not that easy to define and can only be done following assessment with which is what PCAU is there to do. Often this results in delays in bringing the person to treatment; they occasionally have to be re-routed through the CDU or A&E. There are exclusions, which were part of the service specification. “I do think there needs to be some more information out there so they understand what we do because there are some referrals which are totally inappropriate that we can’t take because we can’t deal with it and turn the patients around and get them out so we try not to prolong the patients’ journey”. PCAU staff focus group
Since the first phase of data collection, the PCAU has increased its opening hours and has just started operating a 24-hour service. Staff do not consider that this will greatly affect referral numbers, as very sick people will go through A&E and those who are less seriously unwell will wait until the following morning to see a GP.
Person-centred Care Nurse practitioners and GPs commented on the importance that they placed on delivering person-centred care. All staff felt that they had the flexibility within the unit to provide oneto-one support to patients, providing them with the time to listen to the concerns of COPD patients, explain each stage of the PCAU process, and provide them with additional information. “that’s what I like about it that you can actually spend the time with the patient and try to get to the bottom of things and obviously we don’t have that ongoing relationship but at least we can give clues to their practitioner which they could maybe follow up, so it’s good but I think it’s just getting the remit right I think.” PCAU GP Phase 2 interview
PCAU staff contrasted this with previous environments where they have delivered care; contrasting this with A&E, CDU and other time-pressured environments where they do not have the capacity to deliver person-centred care. A number of PCAU staff related this back to the absence of key performance indicators and specific targets; freeing up their time to deliver a quality service to the patients. However, there are several KPI’s that PCAU is being monitored against in the provider arm contract e.g. patients must be assessed by GP within 30 minutes of arrival. Many felt that they had the flexibility to deliver care irrespective of how long they spent with each individual patient, which was often dependent on the specific needs of that patient. “When a patient is admitted they have been in a GP practice for 10-15 minutes and that’s not long enough to get to the bottom of it so they can sit here and we can go through things and really focus on particular aspects of their history and that’s probably why we can get them home quicker.” PCAU GP Phase 2 interview 38
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As a result, PCAU staff felt that they were more able to promote a more individualised and person-centred service. This was seen as particularly important for those presenting at the unit with COPD; they are often suffering from raised anxiety and hypertension concerning their breathing problems. A one-to-one discussion and person-centred approach can often help reduce this tension; which in some cases is the root cause of the admission. “You can actually take a proper history and examination and have a proper chat to the patient especially like the chest pains with anxiety and especially with panic attacks you can actually go through more and give them patient information leaflets and self help leaflets so that’s quite nice as we have a little bit more time to do it.” PCAU GP Phase 2 interview
Integrated working PCAU staff identified the importance of strong teamwork to ensure the smooth operation of the unit. Here, there is evidence of close working between GPs and nurse practitioners within the unit. This often involves staff sharing specific knowledge and expertise to ensure that they arrive at a quick and accurate decision to treat.
The relationship between PCAU and the WAPS service is strong. “The WAPS team are very good because they sort of specialise as a lot of their patients are COPD and are very good at following up on the patients. “ PCAU staff focus group Outside of the PCAU, however, staff identified the absence of integrated working with other hospital services. PCAU staff identified issues between the PCAU, A&E and CDU which prevents integrated working. Although these relationships have become stronger (as other services become more aware of the PCAU), staff feel as if there needs to be closer working to ensure that they can readily identify overlaps, added value and unique ways of working. This would develop a more efficient service for caring and supporting patients with COPD. “Possibly we could go out with the COPD nurses and see exactly what they do as well as them coming in here and I think that would be good with the matrons as well as it would be good to understand each others roles”. PCAU staff Phase 2 focus group “I think it’s also for the GPs to know what our remit is so that the patient can be directed to the most appropriate place so it’s GPs and staff out there knowing what we do, and also for us having enough information to double check really that the right people are coming here because it does cause problems especially for the patient as they just hand around”. PCAU staff Phase 2 focus group
There is a lot of work going on around this at the moment and there needs to be reference to the joint work that is ongoing to develop more integrated services at strategic level.
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One specific aspect of integrated working which PCAU staff felt needed attention concerned patient referral information. In the first phase of data collection, staff reported that referral information from some GPs and community matrons was very limited. Some improvement was reported in Phase 2, though not to the level expected. R1: We need a base line of observations I mean we get the medical history but sometimes not the full medical history and we need to know the last time they had chest pain and things like that so we can judge R2: Also social things as well... their mobility and their carers at home because some people might not be that ill but if it’s an 80 year old with no people at home then you’re not going to send them home because it’s not safe as somebody needs to observe them so we need that social information as well really. PCAU staff Phase 2 focus group
Training and Management Staff reported that there was little opportunity provided to engage in formal training to enhance their personal development. Current PCAU staff relied upon sharing their expertise and knowledge amongst each other to ensure that the most appropriate decisions were made for the patient. Whilst this was a positive aspect of the service, staff felt that they would benefit from condition-specific training, such as in COPD. This would help provide them with the skills to undertake their role more effectively. “I think we’ve all been within general medicine so we’ve all got a basic knowledge of those things. Some staff have got specific knowledge – we know enough but we’re not really well advanced.” PCAU staff focus group
The nurse prescriber qualification was identified by staff as important. The GP working in the PCAU identified a need for training on x-rays, and also suggested a weekly case presentation as a way of sharing knowledge through the team.
Staff reported that it would be beneficial to be provided with the opportunity to engage in actual service design. Given that the service is relatively new, there are emerging issues which often need to be resolved. PCAU staff (GPs, nurse practitioners) are in the most appropriate position to identify those issues and propose solutions. Currently, PCAU staff feel as if they do not have the autonomy to make those decisions to bring about positive change within the unit. Formal staff meetings provide the forum for these issues to be aired, but there is currently no system for ensuring that these suggestions are incorporated into actual service re-design.
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8. External Stakeholders Successful practice both in the PCAU and in the COPD / O2 service is dependent on the interface between these services and key external stakeholders; notably the WAPS team, GPs and Community Matrons. It has already been identified that many participants, whilst generally very pleased with the service they received, found it difficult to specify which aspects were delivered by the COPD / O2 team, the WAPS team and Community Matrons. This was particularly true in the first phase of data collection, which suggests that roles may become clearer as the service changes become embedded.
8.1 Wirral Admission Prevention Service (WAPS) team The Wirral Admission Prevention Service comprises Senior Nurse Practitioners, Community Nurse Practitioners, Assistant Practitioners and Community Nurse Auxiliaries. They offer a 24 hour services providing nursing care in people’s own homes in order to prevent hospital admission or, in the case of those discharged from the PCAU or in-patient services, to prevent re-admission. “Just to keep people out of hospital, that is the aim. Early support for discharge and trying to stop them obviously getting there in the first place.” WAPS staff focus group
WAPS has evolved from previous services aimed at preventing unnecessary admissions. With the establishment of the COPD / O2 service and the developing role of Community Matrons, the WAPS’ brief has changed, causing some dissatisfaction. “We did get hammered with change and problems and one of the things and this sounds terribly petty and terribly childish but of all the other teams on the Wirral, everybody else is allowed to say no aren’t they? And we are not. We have to take what is thrown at us really.” WAPS staff focus group Patient-centered Along with the other services described in this report, WAPS is a patient-centered service. Much of their work is with people who have acute exacerbations of chronic conditions. Consequently, whilst many of their clients are acutely ill, they identify a need for education along with nursing intervention. “I think at the base of everything is the patient, the service user, and whether or not we are told that what we are supposed to be doing is keeping the patient 72 hours and then moving them on, what we tend to do, because we can’t step them down to anybody else, we step them down within the team so we do have them longer but you can step people down and step people up.” WAPS staff focus group Their input on discharge from hospital, advice regarding medication and style of working are greatly valued by service users and carers.
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“I had the follow-up from the WAPS nurses. Now they are wonderful. I thought they were very, very good. I had them for about six weeks, but then I got a letter to go and see the consultant.” PCAU Service User focus group “If I go bad I’ve only got to pick up the phone and phone the WAPS nurses and they’ll come out to me and set me up with the nebuliser or … and stay with me until I calm down. “ COPD Service User interview Liaison with the COPD / O2 service The WAPS expect to manage people in acute stages, then to refer on the COPD / O2 service for longer term management. This often works in practice, but both teams identified some lack of clarity about roles and procedures. “So the COPD team, what we do now is we refer them to them so that is where they have come in. So when we refer them to them they give a date when they are going in so we know that that management is going to be looked at. So you are not worried about discharging them on day 3 or 4.” WAPS staff focus group “The big thing for us is to sort out is this business with PCAU, WAPS and ourselves to have a sort of clearer pathway because there are no excuses now we’ve been here for long enough.” COPD staff Phase 2 focus group. The demands on the COPD team to review and improve the Oxygen service may make it difficult for them to respond as quickly as the WAPS team would like. “We can send them to the COPD team but they are hammered, they are really busy and the problem with them is we may say “we want you to go out tomorrow” but they can’t guarantee they will be able to.” WAPS staff focus group The WAPS team members are not necessarily respiratory specialists and welcome the opportunity to ask the COPD team for advice. There are minor differences in working practices between the two teams, but these can usually be sorted out as a result of good relationships between individuals. “if they do have a COPD patient that is acute it doesn’t mean that they can’t ring us it wouldn’t stop us giving advice over the phone but we just can’t drop everything for an acute patient because we’re not that service but certainly for advice and support we’re there.” COPD staff Phase 2 focus group Liaison with the PCAU The WAPS team members work very closely with PCAU, often seeing service users in the Unit prior to supporting them on discharge. This close contact is valued by PCAU staff and service users. As soon as I was discharged from hospital thanks god and I was only in over night and then they came out and they were really good. PCAU Service User Phase 2 focus group R1: With COPD patients we can send them home and they will monitor them and take their oxygen levels and observations and just keep an eye on them 42
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R2: If WAPS have any concerns then they will just refer back R3: They do prevent a lot of admissions and they would be in hospital an awful long time without that service.” PCAU staff Phase 2 focus group WAPS staff would like easier access in referring their clients to PCAU services, but find the admissions criteria strict. “We have referred a few through but the problem is getting people in there.” WAPS staff focus group Like the COPD/O2 team, the WAPS nurses would like referral information to be more detailed. It was unclear from the interview exactly which service was failing in this respect, but a move to greater consistency would be valued. “… has referred a patient for us because he had oxygen put in and could we just go out and make sure he is alright with his oxygen. I went to him yesterday and there is nothing to tell me is he meant to have it on for 24 hours, 15 hours or PRN, so how can you educate the patient when you don’t know?” WAPS staff focus group Communication between WAPS and the PCAU seemed to be clear and straightforward, and the two services worked well together.
8.2 Community Matrons Community Matrons are a GP linked community based service, which aims to maintain people with long-term health needs in their own home and to prevent unnecessary hospital admissions. As such, there is some, necessary overlap between their role and that of the WAPS and COPD/O2 teams. Some Community Matrons have a strong background in respiratory nursing. Although there are clear criteria for who should have access to a community matron, service users’ responses suggested that some who were eligible might not be in receipt of a service.
Patient-centred Community Matrons have their own caseloads, so they are able to build up close relationships with service users and their families. They are able to take a holistic, rather than disease specific, view of service users and their needs. Consequently, they sometimes take on issues that are rather more social care than health. This is highly valued by service users and family carers. “Yeah and you get to know the families as well... and you’ll go to the GP and they’ll say they haven’t seen so and so for ages and I will say no that’s because I see them every week.” Community Matron focus group 43
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“I suppose we do have that luxury to spend time, you can’t rush with these type of patients because you could go in there to just do a check on them and it could be something totally different which is making them feel unwell and you do end up sitting there for about an hour to an hour and a half sometimes sorting out all other issues.” Community Matron focus group “If I have got a problem, I have only got to phone the community matron.” PCAU Service User interview
Liaison with COPD / O2 service Between 80 and 90 percent of the Community Matrons’ caseload have COPD, so there is plenty of contact between the services. Community Matrons accept referrals from the COPD / O2 service and vice versa. The purpose is summed up by a Community Matron from the focus group. “Long term management basically because obviously they’ve got issues whether they are on long term oxygen and are at risk of being re-admitted to hospital and just need support as well in general.” Usually, COPD/ O2 staff and Community Matrons work effectively together, with the former providing quick specialist input and the latter, on-going support. R1: They give them an oxygen assessment and will measure someone’s SATs they may or may not do gases... they will follow someone up who has recently started on oxygen and they do a COPD review as well I: They’re only short term aren’t they? R1: They are but I’ve always found them a helpful resource R2: They are helpful you can just ring up and just run something past them and they are very helpful and they will do a joint visit Community Matrons focus group There were, however, some problems. The Community Matrons identified situations where joint visits did not take place and the service use was given conflicting advice. As with the WAPS team, Community Matrons commented that the COPD / O2 team kept separate case notes which meant that information about current and recent medication might not be readily available. “It sounds like room for confusing the patient because I tried a couple of (treatment) options with them either side of Christmas and now someone else has come in and started talking about the same things.” Community Matrons focus group “The frustrating thing is that it’s documented in the home records so if they read the home records everything that has been done will be in there.” Community Matrons focus group They also wanted greater clarity over responsibilities for assessing service users with acute health problems. R: Their response time for blood gases is good... in my experience; if you’re worried then they will go out within a couple of hours 44
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R: To do acute ones? Because I was told by ….. that they’re not doing acute patients because she said we’re not that sort of service Community Matrons focus group The Community Matrons in the focus group suggested that these were just teething problems in a new service that would easily be resolved by regular meetings.
Liaison with PCAU The role of both the PCAU and Community Matrons is preventing unnecessary hospital admissions. Community Matrons are generally positive about the PCAU though they seemed to have relatively limited direct experience of the service. This may be because, if a person is too unwell to be managed at home by the Community Matron, they are likely to need to be admitted to hospital rather than the PCAU. Like the WAPS team, however, they also identified some problems with PCAU admissions criteria and route for referral. One focus group member had been “hauled over the coals” for making the following referral. “I had sent this lady up who wants an investigation done which I can’t do I can’t do a chest x-ray and I just wanted these simple things done and then get her back home with a reasonable plan of action.” There were also several accounts of difficulties in obtaining transport for service users to the PCAU. Visits to the PCAU had been arranged for Community Matrons shortly after their focus group, with the aim of improving communication between the two services. The PCAU staff (Phase 2 focus group) had identified an interesting development that could arise from their move to 24 hour opening. “I think when the unit goes 24/7 there probably will be more involvement because if we wanted a community matron to be involved we could maybe get in touch with them the night before and keep the patient over night rather than sending them upstairs and the matron could come out and assess the following morning so you have prevented a hospital admission.” This demonstrates the advantages to the services and to service users, which can develop from better communication between practitioners.
7.3 General Practitioners as External Stakeholders It was not possible to organise a separate focus group for GPs, but one GP sent short notes giving his views on the COPD / O2 service. These will be summarised below. Other GPs are working in the PCAU and their views have been incorporated into the staff perspectives on that service.
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Views on the COPD / O2 service The GP had referred patients to the COPD / O2 service and had had communication with the COPD nurses. The COPD/ O2 service was seen as beneficial in improving care and support to patients, improving self-management and in reducing hospital admissions. Furthermore, the COPD/O2 service was seen as improving health outcomes and patient well-being, and as reducing visits to the GP. The service was long awaited. The GP was very pleased that Oxygen services were being reviewed and would be used in a more targeted way. The main advantages of the service were optimizing time for the introduction of oxygen, Access to full Pulmonary Function Test’s and reinforcement of pulmonary rehabilitation. The following aspects, which do largely fall into the remit of the COPD and Community Matron services, were seen as important for this patient group: benefits advice, nutritional support, basic physiotherapy exercises. In terms of service developments, the GP suggested a Community Matron-like service to liaise with WAPS and COPD, also that the COPD / O2 service might need to be expanded.
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9. Conclusions Some enhancements to the services have already been implemented between Phase 1 and 2 of data collection. Staff members’ understanding of their service and their responsiveness to service users’ and colleagues’ feedback should be credited with many of these changes. A number of other issues remain. They will be identified below, according to the service to which they relate.
General Issues
Evidence from staff suggests a need to ensure more effective pathways of communication between the PCAU and the COPD/O2 service. These should also include the WAPS team and Community Matrons. Currently, there is limited shared understanding about the purpose of different aspects of the service and how they can work together effectively to enhance care and support for those with COPD. This includes everyday communication about specific patients, using respiratory nurses as sources of expert knowledge and ensuring respiratory nurses have contact with potential users of the COPD service. Care pathways need to be clarified for acutely and chronically sick service users in discussion with key stakeholders. It is recognised that flexibility is required as individuals move between these phases. This would, however, ensure more integration between the COPD/O2 elements of the service and the PCAU whilst creating a continuity of care for the patient; from referral to the PCAU through to the various services for follow-on care. Greater clarity in the roles of these healthcare professionals would also benefit service users and family members.
There is a need to develop robust mechanisms for sharing patient information during the referral processes for COPD / O2 service, PCAU, WAPS and Community Matrons. In relation to the PCAU, the means ensuring that those undertaking referrals (A&E, GPs, the All-day Clinic, WAPS/community matrons/respiratory nurses) are providing the information which is necessary for GPs/nurse practitioners at the PCAU to be more responsive and arrive at a decision to treat more quickly. Often, information about the client is scant and referral notes are too brief. This referral information needs to include (where possible): SATS, case history, previous treatment, current medication, allergies. GPs/nurse practitioners are currently relying on information supplied by the patient; this information can be incomplete and unreliable. In relation to the other services, practitioners should be asked to identify the information each requires. Once this is determined, a common format derived which would suit the needs of all services.
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COPD/O2/ Pulmonary Rehabilitation
It would be beneficial if the provision, which is in place for Oxygen patients, is replicated for all COPD patients. The current process for Oxygen patients is long-term monitoring and visits at least every 6 months. Follow-up is required for COPD patients to monitor closely the package of support put in place by respiratory nurses. It is likely that needs change over the life course and support needs to be continuously re-assessed. Some aspects of this are already in place through reviews leading to treatment optimisation.
Respiratory nurses need to be provided with the ability to prescribe directly medication thorough consultation with general practitioners to patients. Prescribing through the GP is causing unnecessary delays in patients receiving treatment and medication. In addition to minimising delays, prescribing at the point of care would reduce demand currently on GPs to issue prescriptions on demand.
Discussion is required between the COPD/ O2 team, WAPS and Community Matrons in order that each service has simple and immediate access to each other’s case notes on individual service users.
In the context of the extension of the PCAU to a 24-hour service, assess the need for an out-of-hours COPD/ O2 service. Participants identified the importance of accessing the advice and support of nurses during evenings and weekends. This is often the time when those living with COPD have exacerbations in their condition. During working hours, their first point of call has been the respiratory nurse, the WAPS nurse or the community matron who undertakes a visit or provides advice over the telephone. An out of hour’s service has the potential to further reduce hospital admissions in the long-term, though this might be obviated by developments at the PCAU.
Pulmonary rehabilitation sessions need to be extended beyond the current six-week period. The feedback from participants suggests that the six-week period is too short for many participants. Ideally, there should be open channels for the patients to readmit themselves into the programmes at the point they feel they would receive greatest benefit.
Greater individualising of the exercise component of the pulmonary rehabilitation course would be advantageous. This would meet the needs of both younger/fitter participants, and those with more advanced stages of COPD. It might also affect the perception of some potential participants that the course is “not for them.”
All patients need to be signposted into similar services in the local community. The Wirral Breath Easy Group and the Wirral Lung Group are two examples of long-term resident-led exercise groups in the local community. External stakeholders from these two organisations have indicated that they provide leaflets to each service user when they complete the course. Follow-up contact is necessary to ensure that service users 48
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are actively taking up these services should they be required. Progress in this area is evident in the Phase 2 focus groups.
The demand for and dis/advantages of one-to-one pulmonary rehabilitation within the home needs to be assessed. Feedback from participants suggests that those suffering from more severe forms of COPD may benefit from rehabilitation within the home. Furthermore, there are those patients who prefer the home environment (as opposed to group sessions) despite any loss of the social benefits of the group.
Follow-up (at bi-monthly intervals) should be initiated as a measure of the impact of pulmonary rehabilitation. This follow-up should assess in which ways patients are continuing the exercises at home or in community settings, and in what ways they have retained/built upon the benefits from the programme.
Staff members are to be commended for their efforts in addressing issues of accessibility for those wishing to attend pulmonary rehabilitation courses. Other issues for consideration include the possibility of accessing funding for a local community bus, which would remove this barrier and improve take-up on the pulmonary programme, and expanding the course to make use of local leisure centres, perhaps undertaking training and awareness leisure centre staff.
PCAU
There is a need to implement a more formalised mechanism for identifying and resolving problems within the PCAU. Staff members need to be provided with the opportunity to identify problems within the unit and make recommendations for change, which are then acted upon to bring about positive improvement.
There is a need for a more formalised training programme for staff working on the PCAU. This included identifying training opportunities and providing the time for staff to attend condition-specific training in for example, COPD and appropriate time for study leave.
Current misconceptions suggest the staff will need to continue to undertake awareness and promotion exercises amongst healthcare professionals to ensure a wider understanding of the purpose of the PCAU and the criteria for inclusion. These healthcare professionals include GPs, respiratory nurses, community matrons and respiratory nurses. Currently, cases are arriving at the PCAU that they are unable to treat; a better understanding of the service would enable referrals to be more carefully considered before they are sent to the PCAU. This would reduce demand on the service and prevent delays to treatment for the patients. They would also allow feedback from potential referrers, which might inform any revision of referral criteria.
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Appendix H
The majority of the participants have reported that they are satisfied both with the Oxygen service and with patient care assessment unit. The minority of participants were unsatisfied with the service. This requires flexible strategy to provide a higher level of care in order to satisfy the specific needs of the COPD patients e.g. coordination and follow-up services when the patients were discharged either from the Oxygen service or from PCAU.
10. Timescales A number of issues were identified in the early stages which delayed the start of the evaluation from January 2010. These included:
The requirement to send a letter to all clients informing them of the evaluation and providing them with an opportunity to opt out of the research.
The absence of telephone numbers from the client list which necessitated the MMU evaluating team to contact by post in order engage participants in the research.
The necessity to undertake home visits to engage participants as part of the PCAU which were labour-intensive.
In recognition of these issues the timescales for the project have been amended. The data collection for phase 1 of the research began in mid-April 2010 and was completed in midJune 2010. Phase 2 of the research will commence in mid-July 2010 and will be completed in mid-August 2010. A final report will now be presented for delivery in 6th of September 2010.
11. Further Work Although the evaluation collected a broad range of perspectives across multiple data sources, a small number of limitations were identified.
Perceptions of the PCAU and the COPD/O2 Service Participants often found it difficult to determine where the COPD/O2 service started and ended. For many participants, respiratory nurses, WAPS nurses and community matrons were seen as part of the same service; designed to support their COPD needs. They found it difficult to disconnect different aspects of the service when talking about their COPD. In some ways, this complements the service and the seamless/integrated way in which healthcare professionals interact to deliver a system of support for the service users. However, it becomes more difficult to attribute benefits to a specific area of the service.
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Appendix H
Reduced Hospital Admissions It was difficult to ascertain the actual impact of the service upon reducing hospital admissions. The anecdotal report that were provided by PCAU staff to ascertain the impact that the PCAU has had upon reducing hospital admission; through discharge rates. It was more difficult to determine the impact of support provided through the COPD/O2 service. This should be complemented in the future with an audit survey of the programme. The qualitative data did yield sufficient data to suggest that the hospital had prevented unnecessary hospital admissions, captured through the individual experiences of service users and the perceptions of staff. However, quantitative data, in the form of hospital episodes, for each client would need to be collated and analysed to determine an actual reduction in hospital admissions brought about for the COPD/O2 service. Similarly, admission data would need to be examined more thoroughly for the PCAU to determine successful discharges and to determine actual length of stay in the unit.
Benefits to Hospital Services An in-depth evaluation of the COPD/O2 service and PCAU would need to determine the positive impact that the service is having on other hospital services; demand at the CDU and A&E. Comments from staff suggest that the service should be alleviating demand at the CDU and A&E. Further work would need to be done with A&E/CDU admittance data to determine the wider beneficial impacts of the service. This should incorporate the perspectives of CDU/A&E staff regarding their perceptions of the PCAU and its impact on their work.
Long-term improvements A more long-term evaluation would necessitate a full picture has to be established over time. Although two phases of the evaluation were conducted, aspects of the service remain in their early stages and this necessitates ongoing evaluation to be conducted as the service evolves. This will ensure that aspects of service delivery are closely monitored as the service develops, and that issues identified are able to be discussed and used to change practice. This long-term evaluation will help provide some assistance in ensuring the long-term sustainability of the service. Importantly, living with COPD often results in changing needs over time. Patients would need to be monitored over a longer time scale to determine the impact of the COPD/O2 service on providing support and care for those living with COPD.
12. Final Comments As a final comment, we have thoroughly enjoyed undertaking this service evaluation project and feel privileged to have met such inspiring and committed members of health care staff. We have also sincerely appreciated the interest and sometimes-considerable effort that patients have shown in attending focus group meetings and participating in our research. 51
