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Experience of the healthcare system is a theme that was understandably discussed in every interview with the COPD group. Basic themes within this organising theme were primary care, secondary care (with three outlying themes of diagnosis, starting smoking, and patient representative), emergency care and pulmonary rehabilitation. All participants volunteered their accounts of primary and/or secondary care in response to questions about their treatment for COPD. Again, these experiences were specific to each individual although there was a prevailing theme of needing to access urgent medical help in times of emergency. Their descriptions also differed according to whether they received the majority of their care from the GP surgery or attended hospital on a regular basis.

The majority of the sample were happy with the care they received from their GP surgery although Alison said that she went to the GP for other medical problems but felt that they knew little about COPD. Alison therefore preferred to attend hospital for care related to her COPD. With regards to the theme of primary care, very little appreciation was shown by any of the participants in the study towards the regular routine reviews offered by GP practices as part of the changes that came about after the introduction of the Quality and Outcomes Framework (QOF) (Department of Health, 2003) into GP practices in 2004. Participants such as Florence and George had delayed making the relevant appointments because of other non-medical commitments and others referred to these consultations in terms of being checked out or having “just routine” checks. Introduction of these routine reviews ensured that every patient with a particular condition, such as COPD, is monitored on a regular basis. Recall systems are in place in GP practices and attendance at these review appointments should give the individual patient reassurance if their condition is stable and an opportunity to be given a change in medication, or further investigation, if the routine tests indicate that this is required. In addition, advice about self-management of the disease can be given with a view to giving the patient more control over the progress of their COPD and an improved knowledge of when

197 and how to seek emergency help where necessary. The outcomes of this system are designed to be beneficial for the patients and cost-effective for the NHS, in terms of a reduction in both inappropriate requests for emergency care and hospital in- patient stays due to exacerbations of COPD, which could have been avoided by careful monitoring and timely intervention. In addition, GP practices benefit financially by fulfilling the requirements of QOF regarding the monitoring of patients with long-term conditions. This financial benefit may, in turn, be used to improve services in primary care.

Although most of the participants in the study regarded routine reviews with the nurse as inflexible, Florence did say that she felt she could talk to their practice nurse about anything else that was concerning them. This is in contrast to the findings of Chew-Graham et al. (2013) who found that patients with long-term conditions felt unable to raise matters of emotional or social concern in routine reviews. It should be noted, however, that Florence had previously been employed at the Health Centre where she was registered as a patient and this may have some bearing on the relationship she had with her GP and practice nurse. This former working relationship was relevant when discussing whether she was able to talk to the practice nurse about problems that were not directly related to the physical checks being carried out, or the fact that she was able to call the GP for a prescription, when she felt she had an acute chest infection.

Overall, the sample in this study were happy with the care they received from the present healthcare system. No one in the study said that they had sought private healthcare. This may be due to their financial circumstances although Elsie reported that she had no concerns about money and expressed her satisfaction with the NHS care she received. However, some had taken other steps to ensure that they were getting the care they felt was best for them. For example, in terms of the theme of secondary care, Alison and David reported that they have both changed from the local hospital to one that was situated a greater distance away but has, in their view, a more highly regarded respiratory department. Both of these participants were pleased with the move and felt they were getting a better standard of care. However, others in the group were satisfied with their treatment at the local hospital. Elsie felt

198 that her condition had improved with the new medication regime she had been given at the hospital and rated the hospital as “amazing” (295). Harriet was also satisfied with six-monthly visits to the hospital and with the care she received there as an inpatient. She commented that she had been on the same medication regime for many years and appeared satisfied that, despite her one inpatient stay, this combination of check-ups and medication were keeping her COPD stable.

There were three accounts of experiences within the secondary healthcare system that were not common to other members of the COPD group but were, nonetheless, noteworthy as examples of events that were interpreted as being an important part of these individual participants’ lived experience. Clive recounted how he had discovered his diagnosis of COPD by accident when he saw it on his record sheet during a period as a hospital in-patient. Unaware of the implications of this diagnosis, Clive continued to smoke and was not given any information about the illness or medication until he saw his own GP some time later. In this participant’s experience, he found that his GP practice was a good source of information unlike the participants in the study by Chew-Graham et al (2013) who left their practice nurse consultations with unmet informational needs.

The second individual narrative of interest concerning secondary healthcare came from Florence who explained how she started to smoke when she was in hospital having given birth to her daughter over thirty years ago. Her narrative is a good indication of society’s attitude to smoking at a time when the majority of participants in this study would have been smokers, or starting to smoke. This would have been when smoking was still regarded as a positive experience that increased attraction and helped to relieve stress. The dangers of smoking were either less well known or unreported and there may have been considerable peer pressure acting upon people such as Florence who was encouraged to smoke by other new mothers who were in the ward at the time. Although this happened many years ago, it has had long-term consequences for her health. It therefore helps to illustrate the lack of awareness of the dangers of smoking that existed in that era and the context in which people who have COPD today, may have started to smoke. An awareness and acknowledgement of this context may be helpful when advising patients about smoking cessation.

199 Thirdly, Bruce spoke about his experiences of working on a Patient Representative Group (PRG) at the local hospital. Unfortunately, he felt that his views were not being taken into consideration and this was causing him to experience frustration, anger and disappointment. During the interview, Bruce indicated that, in his opinion, the hospital authorities were not taking the experiences and views of COPD patients into account. Although this experience was unique to one individual participant in the COPD group of the study, Bruce was acting as a representative of this patient group, and therefore his perception that some of the needs of COPD patients were not being met in secondary care, is something that may need to be addressed. The replacement of Primary Care Trusts (PCTs) by Clinical Commissioning Groups (CCGs) following the 2012 Health and Social Care Act allows for input from members of the public in the NHS decision-making process at a local level. However, whether this will prove to be a positive step towards increased patient involvement or will be regarded as a token gesture in the way that Bruce perceived his own contribution, will depend upon the structure and dynamics of the individual CCGs. Bruce himself may have had unrealistic expectations of his influence on the hospital authorities. Although the PRG is invited to submit their views and recommendations, it is the hospital or CCG that will ultimately make decisions based on input from a number of sources and reflecting the various medical, financial and ethical influences acting upon them. It may be advantageous for the hospital to manage the expectations of their patient representatives, in an induction or training session, in order to clearly establish what the patient can expect from their involvement in terms of effecting changes to the hospital’s organisation and practice.

Emergency care was a theme that emerged from a number of interviews. As described earlier in this chapter, participants in this study regarded prompt medical assistance in an emergency situation as a healthcare priority and no one in the study referred to this in terms of being an unmet need. In terms of the aims of the study, the need for emergency medical treatment may be regarded as a perceived need, in that in some cases, the outcome may be what the patient, or their relative who made the decision to seek emergency medical help, may have anticipated. For example, David, who recalled that he had phoned for an ambulance many times in the previous

200 year and while some of these incidents resulted in a hospital admission, in other cases, he was sent home after medical advice, which could possibly have been obtained from another source. However, on one occasion, the decision to call an emergency ambulance was reinforced by the paramedic who stated that David’s condition could have proved fatal if they had delayed the call by fifteen minutes. This incident highlights the difficulties faced by COPD patients and their carers when faced with making the decision whether to seek emergency treatment.

Individuality was evident in their interpretation of what required emergency care in that some relied on the attendance of ambulance staff and paramedics (David) while others, Clive for example, were more likely to ring the COPD nurses for advice and some, such as Elsie, phoned their surgery or out-of-hours service for urgent care and Alison contacted their hospital respiratory department. Despite there appearing to be no common strategy for obtaining emergency care among the participants in the study, none of the interviewees said that they had trouble in contacting a healthcare professional when required.

Overall, therefore, regular hospital check-ups were appreciated and participants spoke of adopting changes in medication suggested by the consultants. A high level of respect for hospital consultants (or specialists) was evident from the data whereas some of the participants were critical of their GP care, regarding them as knowing little about their particular condition. To some extent, this is to be expected in terms of the way the healthcare system is structured, with GPs referring patients to specialists for their particular condition. The introduction of primary care monitoring and the increased emphasis on self-management for long-term conditions may be something that is difficult for older patients who have been treated in a certain way for many years, to appreciate. However, none of the participants talked of the value of regular checks at the GP surgery or of being encouraged to change behaviour as a result of routine primary care reviews. These findings reflect those of Hunter et al. (2014) who found that although healthcare practitioners are aware that some forms behaviour change can be beneficial for COPD patients, this was rarely brought up as a topic in consultations (Hunter et al., 2014). It is difficult to establish whether this can be regarded as an unmet psychosocial need in terms of the research question. It