Researchers found increased damage, distress and distrust amongst ‘abandoned’ chronically diseased patients and clinicians from pandemic-related delays and decisions.
The new research, from the University of Cambridge, details how the pandemic reduced access to routine and emergency care for rheumatology patients and describes the long-term impacts on their health and medical relationships.
‘The feeling of abandonment will remain for longer than the memories of the chaos of Covid…we have a lot of work to do to re-build trust.’ (Clinician 83, consultant)
Rheumatology patients with unpredictable and sometimes life-threatening symptoms missed out on treatment, leading to permanent damage, severe illness and distress, and potentially avoidable deaths.
The study also highlights the impact on their mental health and shows that patients who experienced reduced access to treatment and felt ‘abandoned’ are less likely to seek help in the future.
Many clinicians also reported feeling unsupported and endangered, and less than 10% of clinicians in the study felt the Government had supported clinicians during the pandemic.
Over 1,500 rheumatology patients and 111 UK-based clinicians participated in the study, which ran between March 2020 and August 2021, and included surveys and in-depth interviews. The study was led by Melanie Sloan, researcher at the Primary Care Unit, University of Cambridge, with leading rheumatologists and patients on the research team.
The percentage of participating patients who agreed that they were medically supported dropped from 74% pre-pandemic to 40% during the pandemic.
The health impacts from pandemic-induced delays in getting rheumatology care have ‘turned back the clock 20 years…’ reported a consultant in the study, leading to irreversible organ and limb damage. A patient with rheumatoid arthritis stated: ‘I feel forgotten… Lack of care has caused bone deformity that I will have to live with for the rest of my life.’
The delays contributed to potentially avoidable deaths: ‘I don’t think they would have died if they’d come in earlier,’ said another consultant, discussing two lupus patients.
Some patients reported gratitude for the hospital departments and GP surgeries that had managed to maintain prompt care. A patient with vasculitis said: ‘Grateful for the doctors who have cared for me throughout this scary pandemic. They truly are heroes.’
But the research team found large variations between patients attending different hospitals and surgeries and, although some of the early pandemic barriers to accessing care had lessened, many remained.
The psychological impact of being unable to access care, including amongst those who had tried to report suicidal feelings and severe flares, led to many patients feeling ‘abandoned’ and being less willing to report symptoms again. A patient with lupus explained: ‘I would never try and report it or ask them for help again…they just ignored me… you stop asking…it makes me feel worried for my life.’
Many patients have suffered greatly due to reduced care and quite understandably report feeling ‘forgotten’ and ‘abandoned’. They often felt let down by individual clinicians not responding in times of crisis, leading to reduced medical security. However, our study also identified that patient contact attempts often failed without the knowledge of clinicians.
Clinicians reported a high level of empathy for their patients and that their efforts to provide care were often thwarted by inefficient administration systems and technology, chronic understaffing, and under-funding. Our findings from these multiple perspectives suggests that these are largely systemic rather than individual failings.’
– Melanie Sloan, lead author and researcher, University of Cambridge
Although 90% of healthcare staff thought fear of infection was causing patients to avoid hospitals more than pre-pandemic, patients revealed delays were more from frequent difficulties accessing timely medical help in an emergency. One patient said ‘Counted and…tried 121 times to get through to GPs.’ 72% of patients in the study reported at least one appointment cancelled by hospital/surgery staff.
Many clinicians stated that they had frequently dealt with symptoms outside their area of expertise due to sympathy for the patient’s difficulties in accessing the ‘correct’ channels of support. But both GPs and rheumatologists expressed resentment that they had taken on the other’s work during the pandemic and felt that the other was still blocking access.
Our study demonstrated that the relationship between primary and secondary care has deteriorated further during the pandemic. It’s particularly important for these chronically diseased patients that we work together to improve these relationships to enable joined-up support and ensure that all these patients can more easily access support.’’
– Dr Rakesh Modi, study co-author, and academic and clinical GP, Primary Care Unit, University of Cambridge
Widespread UK government and media messaging to ‘protect the NHS’ was another reason why so many patients in the study were reluctant to ask for help. Many patients stated that they felt like a ‘burden’ and ‘guilty’ for bothering busy clinicians. This potentially will reduce longer-term trust and help-seeking in the future.
‘I don’t trust my GP or surgery after being told I shouldn’t seek out help for my chronic disease during the pandemic.’ (Patient with vasculitis)
The under-reporting of mental health symptoms was also described by patients and clinicians. Time constraints, backlogs and increased telemedicine during the pandemic made it even harder than usual for clinicians to ask about mental health and harder for patients to disclose symptoms:
‘I have been to some very dark places this last year and haven’t been able to admit it to myself let alone my doctors…no-one can pick that up on the telephone.’ (Patient with lupus)
Clinicians also discussed concerns about inappropriate ‘unthinking’ management target-setting for telemedicine and additional stress from their lack of control over management decisions. Clinician participants faced the same restrictions and fears as the general population, yet they carried on working in high-risk stressful environments, trying to balance the demands of acute and chronic care and increasingly dissatisfied patients.
Many clinicians shared the patient’s sense of disempowerment and abandonment. One GP stated: ‘We need to retain doctors by giving them enough funding, not burning them out and not killing them by not giving them PPE.’
‘We found clear evidence of the pandemic’s impact on the physical and mental health of these patients with rheumatic diseases. It seems clear that the collapse in their medical security is likely to affect their health and medical relationships far into the future,” said Professor David D’Cruz, leading rheumatology consultant and senior study author. He continued: “Work to remove barriers to accessing support and prompt treatment will need increased investment in staff and administrative systems. Consistent reassurance to patients that they are not perceived as a burden is essential. Making services more accessible and consistently responsive despite the pressures from the pandemic will be critical to reducing these effects on the health of patients and staff.’
Read the study
Melanie Sloan, Rupert Harwood, Caroline Gordon, Michael Bosley, Elliott Lever, Rakesh Modi, Moira Blane, James Brimicombe, Colette Barrere, Lynn Holloway, Stephen Sutton, David D’Cruz. Will ‘the feeling of abandonment’ remain? Persisting impacts of the Covid-19 pandemic on rheumatology patients and clinicians. Rheumatology. 6 January 2022
Please contact Lucy Lloyd, communications, Primary Care Unit