• Fear of catching and becoming seriously ill with COVID-19 outweighed concerns about respondents’ existing health conditions.
• Around 1 in 3 people said they had delayed healthcare and this was broadly consistent across all conditions. This rose to 2 in 5 for people with diabetes, lung disease and mental health conditions.
• People had switched to home therapy, delayed starting new treatments, avoided routine medication monitoring or self- managed. Some felt their health had deteriorated while they waited for the pandemic to abate. 

Recommendations

• NHS Trusts and GP surgeries to provide clear, practical advice to patients on COVID-19 security measures in place before appointments to encourage people to return to care.
• Consistent advice across NHS services for people with long term conditions on COVID-19 risk related to their condition and treatment in consultation with national charities.
• Choice for people with long term conditions on how care is delivered, remotely or in person, so they can make a decision related to their immediate health needs, their personal risk factors and COVID-19 security measures in place.
• The provision of/or signposting to translated information and information in accessible formats.

• 82% of respondents did not receive a follow-up visit and assessment at home and almost one in five of these reported an unmet care need.
• Some people felt their discharge was rushed, with around one in five (19%) feeling unprepared to leave hospital.
• Over a third (35%) of people were not given a contact who they could get in touch with for further advice after discharge, despite this being part of the guidance.
• Overall patients and families were very positive about healthcare staff, praising their efforts during such a difficult time.
• Around a third (30%) of people faced an issue with delayed COVID-19 test results, potentially putting family and carers at risk, or in a care home, other residents and staff.

Recommendations

To help hospitals manage a second wave of COVID-19 hospital admissions ahead of winter, we have made several recommendations based on the experiences of people and staff, including:

• Post-discharge check-ins and assessments: Services should follow policy and ensure people are offered follow-up support soon after discharge, whether by phone or in person.
• Discharge checklists: Patients should be asked about the support they need, including any transport home and equipment required.
• Communication: Patients and carers should be given a single point of contact for further support or questions, in line with national policy.
• Medication: Waiting for medication can often lead to delays being discharged from hospital. Linking patients to voluntary sector partners or community pharmacists who can deliver medicine could avoid delays.
• Boost community care capacity and recognise the value of the voluntary care sector in hospital discharge: The current discharge policy depends on follow-up assessments and care being available. Longer-term, more investment is needed to ensure this happens, including in the voluntary care sector.

• Fear of catching and becoming seriously ill with COVID-19 outweighed concerns about respondents’ existing health conditions.
• Around 1 in 3 people said they had delayed healthcare and this was broadly consistent across all conditions. This rose to 2 in 5 for people with diabetes, lung disease and mental health conditions.
• People had switched to home therapy, delayed starting new treatments, avoided routine medication monitoring or self- managed. Some felt their health had deteriorated while they waited for the pandemic to abate. 

558 (13.3%) had symptoms lasting >28 days, 189 (4.5%) for >8 weeks and 95 (2.3%) for >12 weeks.

Long-COVID was characterised by symptoms of fatigue, headache, dyspnoea and anosmia and was more likely with increasing age, BMI and female sex. Experiencing more than five symptoms during the first week of illness was associated with Long-COVID.

This model could be used to identify individuals for clinical trials to reduce long-term symptoms and target education and rehabilitation services.

*Note: this article is a preprint and has not been through the peer review process yet.

• Novel clinical risk prediction models (QCOVID) have been developed and evaluated to identify risks of short term severe outcomes due to COVID-19
• The risk models have excellent discrimination and are well calibrated; they will be regularly updated as the absolute risks change over time
• QCOVID has the potential to support public health policy by enabling shared decision making between clinicians and patients, targeted recruitment for clinical trials, and prioritisation for vaccination.

• There is a widespread perception that people either die, get admitted to hospital or recover after two weeks. It is increasingly clear that for some people there is a distinct pathway of ongoing effects. There is an urgent need to better understand the symptom journey and the clinical risks that underlie that. People, their families and healthcare professionals need realistic expectations about what to expect.
• A major obstacle is the lack of consensus on diagnostic criteria for ongoing COVID-19. A working diagnosis that is recognised by healthcare services, employers and government agencies would facilitate access to much needed support and provide the basis for planning appropriate services. Whilst it is too early to give a precise definition, guidance on reaching a working diagnosis and a code for clinical datasets is needed.
• The fluctuating and multisystem symptoms need to be acknowledged. A common theme is that symptoms arise in one physiological system then abate only for symptoms to arise in a different system.
• There are significant psychological and social impacts that will have long-term consequences for individuals and for society if not well managed.
• The multisystem nature of ongoing COVID-19 means that it needs to be considered holistically (both in service provision and in research). The varying degrees of dependency mean support in the community should be considered alongside hospital one-stop clinics. Social support needs to be understood together with the financial pressures on previously economically active people.
• COVID-19 has a disproportionate effect on certain parts of the population, including care home residents. Black and Asian communities have seen high death rates and there are concerns about other minority groups and the socially disadvantaged. These people are already seldom heard in research as well as travellers, the homeless, those in prisons, people with mental health problems or learning difficulties; each having particular and distinct needs in relation to ongoing Covid19 that need to be understood.