This study aimed to describe the experience of living with a venous leg ulcer from the patient's perspective, to answer the question‘What is it like to live with a venous leg ulcer?’Investigating the experience of illness is important in understanding how disease processes affect people, how they understand and cope with these processes, and how care may be given most effectively Little research was identified which examined these areas with reference to people with leg ulceration A qualitative approach was taken in the following study, using phenomenological methods to describe the experience of venous leg ulceration Informal unstructured interviews were conducted with 13 informants, guided by their descriptive priorities Tape recordings were then transcribed and analysed for recurrent themes and their meanings It was found that certain symptoms of ulceration, principally pain, were the overwhelming feature of the experience These symptoms caused significant restrictions in people's lives, particularly in their ability to walk and go out Treatment was not described as being efficacious in ameliorating these symptoms, but nevertheless great confidence and trust was placed in the expertise of nurses People coped with the experience mainly by a process of normalizing its components It is concluded that if treatment is to meet the needs of those suffering venous leg ulceration, then symptom control must be the highest priority

Background: Specialist palliative care services have a key role in a whole system response to COVID-19, a disease caused by the SARS-CoV-2 virus. There is a need to understand service response to share good practice and prepare for future care. Aim: To map and understand specialist palliative care services innovations and practice changes in response to COVID-19. Design: Online survey of specialist palliative care providers (CovPall), disseminated via key stakeholders. Data collected on service characteristics, innovations and changes in response to COVID-19. Statistical analysis included frequencies, proportions and means, and free-text comments were analysed using a qualitative framework approach. Setting/participants: Inpatient palliative care units, home nursing services, hospital and home palliative care teams from any country. Results: Four hundred and fifty-eight respondents: 277 UK, 85 Europe (except UK), 95 World (except UK and Europe), 1 missing country. 54.8% provided care across 2+ settings; 47.4% hospital palliative care teams, 57% in-patient palliative care units and 57% home palliative care teams. The crisis context meant services implemented rapid changes. Changes involved streamlining, extending and increasing outreach of services, using technology to facilitate communication, and implementing staff wellbeing innovations. Barriers included; fear and anxiety, duplication of effort, information overload and funding. Enablers included; collaborative teamwork, staff flexibility, a pre-existing IT infrastructure and strong leadership. Conclusions: Specialist palliative care services have been flexible, highly adaptive and have adopted low-cost solutions, also called ‘frugal innovations’, in response to COVID-19. In addition to financial support, greater collaboration is essential to minimise duplication of effort and optimise resource use. ISRCTN16561225 https://doi.org/10.1186/ISRCTN16561225

Policies state that access to palliative care should be provided according to principles of equity. Such principles would include the absence of disparities in access to health care that are systematically associated with social advantage. A review of the literature a decade ago identified that patients with different characteristics used community palliative care services in variable ways that appeared inequitable. The objective of this literature review was to review recent literature to identify whether such variability remains. Searching included the use of electronic databases, scrutinizing bibliographies, and hand searching journals. Articles were included if they were published after 1997 (the date of the previous review) up to the beginning of 2008, and if they reported any data that investigated the characteristics of adult patients in relation to their relative utilization of community palliative care services, with reference to a comparator population. Forty-eight studies met the inclusion criteria. Patients still access community palliative care services in variable ways. Those who are older, male, from ethnic minority populations, not married, without a home carer, are socioeconomically disadvantaged, and who do not have cancer are all less likely to access community palliative care services. These studies do not identify the reasons for such variable access, or whether such variability is warranted with reference to clinical need or other factors. Studies tend to focus on access to specialist palliative care services without looking at the complexities of service use. Studies need to move beyond description of utilization patterns, and examine whether such patterns are inequitable, and what is happening in the referral or other processes that may result in such patterns.

ObjectivesTo understand successful strategies used by people to cope well when living with advanced cancer; to explore how professionals can support effective coping strategies; to understand how to support development of effective coping strategies for patients and family carers.DesignQualitative serial (4–12 week intervals) interview study with people with advanced cancer and their informal carers followed by focus groups. The iterative design had a novel focus on positive coping strategies. Interview analysis focused on patients and carers as individuals and pairs, exploring multiple dimensions of their coping experiences. Focus group analysis explored strategies for intervention development.Participants26 people with advanced (stage 3–4) breast, prostate, lung or colorectal cancer, or in receipt of palliative care, and 24 paired nominated informal/family carers.SettingParticipants recruited through outpatient clinics at two tertiary cancer centres in Merseyside and Manchester, UK, between June 2012 and July 2013.Results45 patient and 41 carer interviews were conducted plus 4 focus groups (16 participants). People with advanced cancer and their informal/family carers develop coping strategies which enable effective management of psychological wellbeing. People draw from pre-diagnosis coping strategies, but these develop through responding to the experience of living with advanced cancer. Strategies include being realistic, indulgence, support, and learning from others, which enabled participants to regain a sense of wellbeing after emotional challenge. Learning from peers emerged as particularly important in promoting psychological wellbeing through the development of effective ‘everyday’, non-clinical coping strategies.ConclusionsOur findings challenge current models of providing psychological support for those with advanced cancer which focus on professional intervention. It is important to recognise, enable and support peoples’ own resources and coping strategies. Peer support may have potential, and could be a patient-centred, cost effective way of managing the needs of a growing population of those living with advanced cancer.

Considering advance care planning as a repeated process of discussion of prognosis, concerns and probable preferences for care would be more useful than encouraging binding advance decisions. Further research should assess the effectiveness of this approach. Local coordination of who is responsible for information provision is needed, and greater involvement of patients with COPD in management decisions as they arise.