Contributors

A questionnaire (see appendix) was sent to a number of organisations and key decision makers. Some organisations provided single coordinated written responses while other organisations provided multiple replies from a number of relevant stakeholders within the organisation. There were 226 questionnaire responses and a number of additional submissions and documented conversations (the list of responders is provided in Appendix 6).

A number of relevant health service providers and carers were also invited to contribute to the survey consultation process; this included targeting GPs, acute hospital staff, and respiratory scientists.

Some contributors provided information in phone calls or email communication. Submissions were also made on work being undertaken and proposals for service development.

The range of service providers who responded was comprehensive and included the following: GPs, respiratory nurse specialists, clinical nurse managers, chartered physiotherapists, occupational therapists, social workers, nutritionists, dieticians, hospital consultants, directors of nursing, directors of public health nursing, public health and community nursing staff, smoking cessation officers, pulmonary scientists and care of the elderly staff.

A patient focus group was arranged via an existing patient support group. Patients also made written submissions and were in contact by phone and e-mail.

6.2.2 Themes

This section outlines the main themes from the stakeholder consultation, where the questionnaires asked about the needs of patients with COPD and the barriers they faced to better care and management. The needs detailed by the consultation are summarised below:

• Timely access to local specialist services. This includes timely diagnosis, treatment and access to review, monitoring and follow-up

• Patient education for physical therapies, pulmonary rehabilitation, medication, disease progression and entitlements

• Rapid access to treatment for acute exacerbations

• Poor quality of life for patients

• Psychological distress and social isolation

• Smoking cessation support

• Need for better home support, adaptation, transport and financial support.

The lack of services to address these issues were seen as barriers to the best care for patients with COPD.

a) Timely access to local specialist services, including timely diagnosis, treatment and access to review, monitoring and follow-up

Multiple examples were provided of how patients and staff need timely and responsive services. The lack of a national/standardised treatment protocol has led to inconsistent service provision around the country with differing models of care and problems of service integration. At present the delivery, quantity and quality of services vary by geographic region. Specialist services and staff are crucial to patient outcome. There are services providing best practice care and integrated care covering assessment, diagnosis, early intervention, treatment, pulmonary rehabilitation and access to review, monitoring and follow-up and access to palliative care if necessary. These services have multidisciplinary teams and outreach services. The issue is the geographical variation in access to these services.

Access to a multidisciplinary team approach is recognised as best practice for the management of COPD (ref). There is a need for access to specialist respiratory care at a designated centre with a clinical nurse specialist in respiratory care, a respiratory physiotherapist, and an occupational therapist. A psychologist, clinical nutritionist and public health nurse are also seen as necessary in specialist centres.

Some patients have difficulty accessing services. This can be for a number of reasons including the lack of a respiratory specialist available locally, long waiting times/delays for the Medical Assessment Unit, specialist services or outpatient departments and the need to access respiratory expertise through ED. In some areas access to equipment, oxygen and home adaptation is an issue.

Pulmonary Rehabilitation is required by all patients diagnosed and treated for COPD.

Outreach Programmes which provide “hospital in the home” care are available in some areas and are particularly suited to this condition where frequent exacerbations often lead to ED admissions. This programme encourages admission avoidance and/or early discharge, access to local monitoring and follow-up, and review. Some services have direct access for patients to OPD.

GP’s have indicated their willingness to provide dedicated assessment, treatment and follow- up as part of a programme for chronic disease management in primary care, a form of shared care model. This would facilitate early access to assessment, diagnosis and care in order to prevent deterioration in the patient’s condition.

b) Patient education on physical therapies, medication, disease progression and entitlements

Stakeholders stated that information and understanding of COPD among patients was poor. Education and ongoing support lead to a greater sense of empowerment and control of the condition and symptoms.

The importance of primary and secondary prevention were emphasised including the need for smoking cessation programmes, the importance of the provision of medication for the control and relief of symptoms, influenza vaccinations, training and education for physical therapies, O2 and inhaler technique. Poor information on services available and progression of condition was a barrier to best care for patients. Literacy proofing was recommended for all materials produced and distributed for patients and families.

Immediate access to medical support for acute exacerbations was identified as a need of patients with COPD. Patients often experience frequent exacerbations, poorly controlled symptoms, long waiting times, lack of beds in winter and revolving door ED. The model of care proposed for timely access differed among respondents and geographical regions and reflects the heterogeneity of services currently in existence. Solutions proposed include development of fast track or direct access to ED departments, Medical Assessment Units, Rapid access clinics (all hours) and enhanced primary care services.

d) Poor quality of life for patients

Many stakeholders commented on the poor quality of life of many patients with COPD. The issues noted most often were the following; poor housing, poor social circumstances and supports, poor transport, poor seating and disabled parking, and poor health status generally. COPD interferes with the capacity to conduct activities of daily living. This impacts on family members as well. Many patients have shortness of breath with excess sputum production, low exercise tolerance and recurrent infections. The need for LTOT when indicated can also severely restrict patient’s mobility outside of the home or hospital.

e) Psychological distress and social isolation

The poor quality of life many COPD patients endure has an effect on their level of psychological distress, including anxiety, fear and depression. In some cases, there is also a level of stigma and guilt due to the knowledge that smoking has caused their condition and due to their inability to quit smoking even when the condition is advanced. There is social isolation and a fear of leaving the house in case they get an exacerbation or from the embarrassment of carrying oxygen.

Social support is important in overcoming this issue and counselling and support groups need to be available. Support groups encourage knowledge and expertise in patients and an understanding of the disease process and provide much needed social support.

f) Needs for better home support, adaptation, transport and financial support

Many patients with COPD need home adaptation and home help. Staff and support groups identify access to aids and appliances and help with activities of daily living as a need of patients and a lack of these as a barrier to better care and management.

Financial concerns are a problem for those above GMS means test level where the cost of medications and home adaptation is often beyond their means. People with COPD are not entitled to a long term illness card with its associated benefits.