This programme of work ran from 2012 to 2016 and used comprehensive, multiple-perspective evidence to generate six key recommendations which address the needs of patients living with COPD and their informal carers
Chronic obstructive pulmonary disease (COPD) is a chronic, progressive condition with high symptom burden. The informal carer burden is significant. COPD accounts for one death every 20 minutes in England and Wales. National strategy states that quality end of life care should be available to patients with any condition, yet we rely on planning tools developed for cancer which are inappropriate. Our limited knowledge of trajectories of support needs and care preferences in advanced COPD has created uncertainty in the timing and type of supportive interventions.
This Marie Curie and NIHR funded study collected mixed method longitudinal evidence on experiences and outcomes of care and support from patients, their informal carers, and their health care professionals (HCPs). Working with a population-based cohort of over 500 patients, informal carers and HCPs, this extensive programme sought to identify a new model for care and support in advanced COPD. The findings informed six recommendations, underpinned by action points, and linked by the concept of proactive person-centred care. Person-centred care is not a new concept, but the recommendations, grounded in patients’ and carers’ experiences, are novel in suggesting how it can be enabled within the existing health system.
The six key interlinked recommendations:
The six recommendations were broadly endorsed by an invited stakeholder group (2015) and by a larger stakeholder survey led by RAND Europe (2016). The recommendations and actions points target a range of stakeholders, including researchers. In response to recommendation 3 we have developed the Support Needs Approach for Patients (SNAP): an intervention underpinned by an evidence-based tool for identifying and communicating patients’ support needs. We are now seeking funding to validate the SNAP tool and pilot the approach. In response to recommendation 4, we are seeking funding to develop a COPD version of the Carer Support Needs Assessment Tool (CSNAT), and develop and test a Carer Support Nurse role.
Key policy implications
The COPD trajectory isn’t predictable – services and HCPs should focus on assessing and addressing individual needs.
Lack of public understanding of COPD, breathlessness, palliative care and informal carers is limiting.
Action points for the six recommendations:
1.1 – Enable generalist HCPs to think differently about access to appropriate care and support, changing the drivers for provision and referral from prognosis and trajectories to patient and informal carer need
1.2 – Support generalist HCPs to make timely referrals to specialist palliative care when required, driven by patient and informal carer need
1.3 – Enable generalist HCPs to provide appropriate non-specialist palliative care to patients and their informal carers – specialist palliative care is important, but palliative care is not just the remit of specialists – this could be achieved through HCP training across the generalist-specialist interface
1.4 – Address the tendency of policy documents and directives to equate palliative care with specialist palliative care, and to equate palliative care with end of life care – both are unhelpful
1.5 – Change the language we use in relation to future care planning
2.1 – Incentivise identification of, and response to, patients’ self-identified support needs by HCPs
2.2 – Incentivise identification of informal carers by HCPs
2.3 – Incentivise identification and response to informal carers’ self-identified support needs by HCPs
3.1 – Support research to develop and pilot the Support Needs Approach for Patients (SNAP)
3.2 – Address inequities in the provision of existing referable services
3.3 – Increase generalists’ knowledge of non-pharmacological interventions for intractable breathlessness
3.4 – Prompt HCPs to establish the presence of, and review appropriateness of, patient-identified key HCPs
4.1 – Encourage HCPs to identify and acknowledge informal carers
4.2 – Encourage HCPs to implement the Carer Support Needs Assessment Tool (CSNAT) approach with carers
4.3 – Prompt HCPs to establish the presence of, and review appropriateness of, carer-identified key HCPs
4.4 – Support research to explore the feasibility of a dedicated Carer Support Nurse role
5.1 – Review the NICE-approved four-level model of psychological assessment and support for cancer patients and families for potential adoption by HCPs working with those living with advanced COPD
5.2 – Provide brief, accessible, post-registration training in psychological support for practice nurses
5.3 & 5.4 – Action recommendations 3 and 4
6.1 – Develop and test educational resources on COPD, misconceptions about people who are breathless in public, palliative care, and the caring role
6.2 – Encourage the provision of educational media representations of COPD, people who are breathless in public, palliative care, and the caring role