The struggle to leave no patient behind after Covid-19

Covid-19 shook up not only our way of life but also how health professionals delivered patient services in the UK when it took hold in March. Surgeries and hospitals scaled back non-coronavirus care as resources were shifted to the acute frontline. Patients were advised to stay at home where possible, and surgeries had to rapidly set up remote triaging and consultations. Meanwhile, routine activities, such as cervical screening and long-term condition reviews, were paused. National screening for conditions including bowel and cervical cancer were largely halted, innovative trial therapies cancelled and cancer surgery prioritisation lists drawn up, with the most urgent at the top and others pushed to the end of the queue. Community nurses were stretched to the maximum as they coped with early hospital discharges, with patients and families encouraged to deliver care themselves where possible. But now lockdown is easing and normal healthcare services resuming, the scale of the backlog left from pausing services is emerging.  

The pandemic could lead to 35,000 extra cancer deaths in the UK within 12 months because of diagnoses and treatment delays, according to research released this month by DATA-CAN, the Health Care Research Hub (HRD UK) for Cancer. Urgent cancer referrals by GPs fell by 60% during lockdown, down from 199,217 in April 2019 to 79,573 in April 2020, figures from NHS England in June have shown. Breast cancer was among the hardest hit with a drop in referrals of 78%, from 16,753 in April 2019 to 10,792 in April 2020. 

Health services now face a deluge of appointments, referrals and unseen health problems – all against a backdrop of chronic staffing issues. More than 14,000 nurses came out of retirement to the frontline during the pandemic – but they signed up to a temporary register, meaning healthcare services will likely be left with the same vacancies when they leave the health service once again, which is around 40,000, according to NHS Digital. So how daunting is the task facing primary care and community nursing in clearing the backlog, and what are their plans in dealing with it?   

Catching up with cancer   

Cancers being missed or not treated during the pandemic is one of the most serious concerns among health professionals.  

Dany Bell, strategic advisor for treatment at Macmillan and registered nurse tells Nursing in Practice that while patient services have started again there are still challenges to bringing them back to pre-Covid-19 levels.  

‘The workloads for the NHS and the number of referrals from primary care is still well below what it normally is,’ Bell says. Hospital visits for a patient with a weakened immune system have had to be stopped or delayed because they are more at risk of being seriously ill if they get Covid-19, she explains.  ‘Treatment plans have also had to change,’ Bell states. ‘There are still challenges in some cancers where treatment is more complex, which can be tricky to carry out with the risk of Covid-19.’ 

Ms Bell adds it is difficult to ensure diagnoses are made as ‘people are afraid to come forward with possible cancer symptoms’. She warns these delays to screening and treatment will lead to greater problems in the future – as people will be diagnosed at a later when the cancer is at a more ‘serious stage’ and they will not have received the treatment they needed.  

‘District nurses are going to be a big part of the clean-up operation,’ she points out. They will deliver symptom management and practical support at home for any cancer presentations that were missed, Ms Bell says. Although, she highlights, the pressure on them will now be greater as they will be dealing with cancers that are at a more developed stage than they would have been if normal screening services had been in operation.  

‘The work is going to be tough’, Bell says. ‘[District nurses’] palliative care and end of life workload will have and will continue to increase – and then you’ve got to do all that work in a different way too’, such as having to work wearing personal protective equipment.  

This at a time the district nurse numbers are plummeting – going from a high of 41,948 in January 2010 to 36,094 in February 2020.  

Imogen Pinnell, health information manager at Jo’s Cervical Cancer Trust, paints a similar picture of an uphill battle to catch up with cervical screening services. She says the backlog of test is ‘worrying’ and expects it will be many months before cervical screening returns to normal. 

Jo’s Cervical Cancer Trust estimates that around 600,000 smear tests have been missed across England, Wales and Scotland during lockdown. Even before Covid-19, there were already 1.5 million tests overdue in England alone.  

Ms Pinnell says practices can encourage women to come forward for a test by letting them know when they can book screening and what their appointments might look like, either over the phone, text or sending a letter. They can also stagger screening invitations to ensure higher risk people are prioritised and the services not overwhelmed, she recommends. ‘We want no one to be missed out,’ she adds, especially as fears of catching Covid-19 might continue to put women off booking tests. Although, she acknowledges, it will take some surgeries longer to catch-up with cervical screening than others, depending on their resources and staffing.   

Jenny Greenfield, a practice nurse manager based in East Sussex, says her practice is big and well-resourced enough to be able to deal with a surge in cervical screening appointments, even with the extra burden of infection control: ‘We’re a big surgery, so it’s easy for us to take the precautions. But I think it might be quite tricky for some surgeries logistically if they are smaller sites or have fewer staff members or vacancies.’   

Elia Monteiro, a practice nurse based in London, says her surgery has been successfully ‘catching up nicely’ with smear tests. ‘Patients themselves have been calling up about smear tests and we’ve been happy to accommodate them. You are supposed to prioritise urgent screenings, but we take in all we can if we have the capacity.’ She explains although her surgery, along with others, stopped routine cervical screenings, they have continued to do urgent tests throughout lockdown. She adds that with cervical cancers, ‘it’s not as critical as other conditions as long as they have attended previous screenings because the cancer develops slowly.’   

Diabetes and childhood vaccinations   

What Ms Monteiro is worried about is that diabetic patients have not been getting the treatment they need. Some diabetes patients’ blood sugar levels ‘have gone through the roof’, she says. Ms Monteiro explains: ‘We did everything we possibly could, but blood tests were delayed because people thought services were closed’, although she adds that remote support has helped. ‘We are going to have to catch up with reviews and some people’s conditions will be worsening because they haven’t accessed the practice in months.’  

Daniel Howarth, head of care at Diabetes UK agrees. Lockdown has been ‘worrying’ for people with diabetes, he says. People with diabetes should have a diabetic review at least once annually, including eye and foot examinations, blood pressure checks and a blood glucose review. During lockdown, with these appointments cancelled, it was even more important that people with diabetes sought help quickly if they needed care, Mr Howarth says. However, their higher risk of serious illness or death from Covid-19 could lead to an increased fear of infection and an avoidance of services in a patient. A third of 23,804 hospital deaths with Covid-19 in England, up to 11 May, occurred in a patient with diabetes, NHS research shows.  

‘We know that people are still waiting for their reviews that they should have had in the past few months,’ adds Mr Howarth. ‘Our helpline had almost a 400% increase in the early days of lockdown from people trying to access information and support. People didn’t understand that GP practices were open in the early stages. We also know that anecdotally a lot more people have been presenting later with type 1 diabetes with diabetic ketoacidosis.’ Diabetic ketoacidosis is a life-threatening complication from severe insulin deficiency.   

Mr Howarth continues: ‘We’ve been working with Covid-19 response teams on guidance on how triage can prioritise the most urgent diabetic appoints, such as patient eye screening, going forward. Practice nurses and community nurses will be absolutely critical in the following months.’ Practice nurses are often the people who carry out the annual diabetes and foot check, while community nurses may carry out tasks such as helping to deliver insulin.   

While some immunisation programmes such as shingles were paused during the pandemic, NHS England was still urging parents to bring children forward for vital jabs. However, the number of MMR (measles, mumps and rubella) vaccines delivered in England dropped by 20% during the first three weeks of lockdown. The World Health Organisation warned in March that disruption to immunisation programmes during a pandemic can result in an increase in vaccine preventable diseases in a population. Shutting schools has also meant that some vaccines – such as the Human Papillomavirus vaccine – are harder to access for some children.   

‘Having an effective flu season is going to be a huge part of our ability to stay within NHS capacity’

Helen Bedford, professor of children’s health at University College London, says that making up for missed vaccinations is vital. Some GPs have put in special measures – such as talking parents through concerns over the phone and offering a more personalised service – to encourage vaccine uptake but concern remains. ‘Practices need to be very organised to be able to catch up and ensure the flu vaccination programme is effective,’ she warns.   

Just as practices are considering how to catch up with childhood vaccinations, the Government announced in July that it had procured enough jabs for the biggest seasonal flu vaccination in history this winter. The British Medical Association is in discussions with NHS England about whether it would be possible to vaccinate patients against flu in marquees, town halls, community centres, care parks, sports stadiums and other venues. 

Ms Bedford stresses that a serious flu season, on top of a worst-case scenario of a second surge in coronavirus infections, could overwhelm the NHS, especially if uptake drops. Uptake of flu vaccinations in the six-month to two-year age group with chronic conditions is already ‘abysmal’, adds Ms Bedford, before suggesting that Covid-19 could make this worse. She continues: ‘Not only do we want to protect at-risk children like those, but we want to protect the health service.’   

Toby Green, a policy and health manager at the Royal Society for Public Health, agrees: ‘It’s really important that we have as good of a flu season as ever this year. Having an effective flu season is going to be a huge part of our ability to stay within NHS capacity, but also there might be more people at risk of serious illness due to Covid-19.’ Mr Green stress that ‘clear messaging’ will be key. He adds: ‘Thankfully, people delivering these vaccinations are health professionals who are among the most trusted people in the country, so are really well positioned to have these conversations with new parents.’  

The long-term backlog  

Even after the flu season, the fallout from Covid-19 is likely to be long from over. The loss of loved ones, jobs, financial security and social contact with family and friends is likely to have a negative impact on people’s mental health for years to come.  

‘It would be a real mistake to overlook the mental health implications of the pandemic, and I think these impacts will be many and varied,’ says Ben Hannigan, professor of mental health nursing at Cardiff University and chair of Mental Health Nurse Academics UK, a membership group that promotes mental health nursing.  

In June, a Nuffield Health reported that around 80% of British people working from home feel that lockdown has had a negative impact on their mental health, while a quarter said they were finding it difficult to cope with the emotional challenges of isolation.   

People already using mental health services may have struggled to access remote appointments because they lack access to the technology or simply because they are not comfortable with it, or may have received a reduced or different service, Professor Hannigan says. Others who might not have otherwise needed mental health support might also now need services, particularly those living in poverty or undertaking low-quality work.  

He explains: ‘People might be balancing home working with home schooling in less than optimal living spaces with overcrowding, with no access to a garden. All that is really going to take its toll,’ says Mr Hannigan. Others will have been ‘traumatised’ if they have lost loved ones or spent time in an intensive care unit.  

Mr Hannigan concludes: ‘What we don’t know yet is an estimate in what that’s going to mean in terms of support, care and mental health services in the future. But I am concerned going forward, also for workload on understaffed nurses and community mental health teams.’  

Ms Monteiro agrees people’s worsening mental health will put a strain on practice and community nurses. ‘Every patient I see now seems to have such a low mood,’ she says. ‘Even people who do not have a history of mental health issues are suddenly presenting. I think the impact of lockdown on mental health will be really pronounced – and the demand will far exceed the availability of services.’

Rachael Hearson, a health visitor based in Dorset, also fears for the mental health of families ‘cooped up together’ for long periods of time. She is also concerned it could be partly responsible for the surge in domestic abuse cases. Calls to domestic violence charity Refuge doubled by 49% in the week before 15 April, while visits to its website trebled in March and the Men’s Advice Line saw an increase in calls of 16.6%. 

Health visitors are often the first to be called to respond to family and children mental health problems, but also domestic violence and abuse cases.  But they have often not been able to access people’s homes during lockdown and many were redeployed to other roles or geographical areas to tackle the pandemic. So for many victims, this has meant being trapped at home with an abuser, isolated from the people who can help them. Ms Hearson fears that this could have long-term mental health effects on the victims.

She also warns it might be challenging for health visiting to quickly return to normal. ‘I think it’s going to be hard to get a coherent service and response going again, when we’ve got colleagues who haven’t been into people’s homes in months and different families who have had different levels of contact.’  

Yet, like so many other areas of nursing, health visiting has struggled with chronic staffing problems and underfunding. Numbers dropped from 10,309 in October 2014 to 6,844 in February 2020, and caseloads have risen as a result. Ms Hearson warns: ‘Normally, nurses and health visitors feel like they are firefighting all the time. It feels like the things we have missed because of coronavirus is going to make the situation worse.’    

RCN District Nursing Forum chair Julie Green also warns: ‘Many district nursing teams have worked full on throughout the pandemic, not really taking holiday. They are exhausted and need to regroup and replenish their energy to be able to continue.’ 

But while nurses may have their work cut out for them in getting diagnoses, treatments and vaccinations back on track, coping with a rise in mental health issues and domestic violence cases – whilst suffering diminished numbers – there could some good that comes from the pandemic.    

‘There is an opportunity in district and community nursing – and primary care nursing – to show everyone the complexity that we deal with. We really need to retain that publicity around our role,’ says Ms Green. She says it’s a chance to show that ‘we have good leadership everywhere within nursing and an amazing, adaptable workforce.’ But adds: ‘It just needs investment.’