As well as the devastating effects of the virus itself, the Covid-19 pandemic has disrupted the delivery of routine NHS services and, as a consequence, the experiences of patients living with long-term conditions. Recent messages have attempted to ensure that in the second wave of the virus, it’s clear that the NHS remains open and available for those who need it, and a public campaign has even been launched to encourage people to seek help.
One group that has been particularly affected are those living with heart disease. Drawing on 2,000 anonymous posts from the British Heart Foundation’s online forum, we explore the impact of the first Covid-19 wave, and the main lessons for services as we head into winter amid further restrictions.
The importance of access to and continuity of care
Many shared experiences of cancelled appointments, including surgery, investigative procedures and follow-ups, even after being told they were a priority. People also reported difficulty accessing services like NHS 111 and primary care, with some advised by their GP practice to self-manage and only get in touch in an emergency.
Face-to-face services like cardiac rehab were either suspended or moved remotely. Despite providing an alternative, people felt they were missing out on peer support with others with the same condition. Some reported not being able to speak to their usual consultant, and being unaware of who might answer their questions.
Many said they were sympathetic about the need to free up capacity and the rationale of cancelling procedures that had been planned in advance. However, some were also concerned about the possible impact on their own condition, and felt that during a pandemic their situation was less important. There were also concerns about using NHS services for fear of getting the virus, thinking that staying away was safer.
Once routine care restarted, people became more confident in using NHS services again – and were positive about their care and the new procedures in place. But the full impact of missing out on care earlier during the pandemic is unclear. Not just from cancelled surgery, but also the wider disruption to their long-term conditions of missed check-ups or medication reviews, or their inability to speak to their usual health care professional.
Clear information and messaging about risk
Those considered particularly vulnerable to the virus were advised in March to shield. But a lack of information and clarity was problematic for people with heart disease, who were unclear about their individual level of risk. This included if they had a particular condition or taking a specific medication, whether the risk was the same if the condition was well managed (or surgery took place a long time ago), and how this was affected by other comorbidities or another long-term condition.
Those not officially required to shield were unclear why, and struggled to speak to someone about their situation. Some were also concerned about their ability to work (especially if they were unable to work from home).
Understanding the long-term impact
Covid-19’s impact on routine care has been extensive. For patients with conditions such as heart failure, we’ve seen a reduction in hospital admissions and diagnoses – suggesting they have been struggling to access the care they need.
Respondents were concerned about how their treatment would be prioritised, particularly for those waiting the longest, and whether they would be “at the front of the queue” once their surgery was rescheduled.
As well as the clinical impact of delayed treatment, the mental health impact is huge. People reported stress, anxiety and, while waiting for a diagnosis, feeling “in limbo” –particularly while it was uncertain when their appointment might be rescheduled.
Although this is just one group of patients, our analysis has raised numerous issues that require action, and importantly align with the findings from other recent research – namely the need for clear information and the importance of maintaining access to routine care.
How to ensure that routine care in the NHS continues as coronavirus cases rise has been under the spotlight, with Covid-free hospitals, ring-fenced beds and new guidance on waiting lists already discussed. However, it’s not clear if and how this might change should cases and hospital admissions rise further, particularly in high and very high alert areas. Some providers have already begun curtailing routine services – to free up capacity or to deal with staffing issues – and it’s hard to see that there won’t be negative consequences for non-Covid patients.
Ensuring that services for non-Covid conditions continue – and importantly, communicating this effectively – will be vital in mitigating the potential damage on people with heart disease and other long-term conditions. It’s also essential that information and guidance on individual risk is clearly and effectively communicated to people who are affected.
People are not currently being advised to shield again, and instead guidance will be tailored based on the local situation. Making sure that people can discuss their own situation with their health care professional is essential. Equally important is ensuring that people are provided with appropriate practical and emotional support, both for day-to-day activities and to cope with ongoing uncertainty about the impact of the pandemic.
Understanding what patients feel
Underlying all this is the need to understand the experiences of patients. For people with long-term conditions, there is a greater risk that their needs are hidden from view because they are not easily counted through waiting lists or activity data. As a second wave of Covid-19 gets underway, making use of patient feedback and experiences can help to make sure that people are still able to access the care and support they need.
*We analysed two samples of 1,000 anonymous posts to the BHF online forum from March/April and May 2020. Data was analysed using a coding framework.
Hutchings R (2020) “How has Covid-19 impacted on cardiovascular services and patients?”, Nuffield Trust comment.