A few months ago, a 70% drop in cancer referrals to hospitals would have caused an outcry. During the Covid-19 pandemic, it is par for the course.
This sharp fall in referrals, officially reported by NHS Vale of York CCG, is not an exception.
Official UK statistics aren’t yet available but England’s national cancer director said urgent suspected cancer referrals were down in England by 62% during one week in April, and the Scottish interim chief medical officer confirmed a 72% reduction that month.
And it’s not just cancer that’s causing concern. Total referrals for March in England were down 32% year on year.
This has been attributed to two factors: first, patients avoiding their GP practices and failing to report their symptoms, partly out of fear of catching the virus; and second, trusts rationing services by raising referral thresholds because of the focus on Covid-19. Some GPs have been told by their CCGs not to refer patients at all, contrary to guidance.
For GPs, this is leading to a disturbing waiting game: first, as they fear for the long-term health of their most vulnerable patients; and second, as they anticipate the growing mountain of work they will face when patients regain the confidence to leave their homes.
But there are already indications about the effect of these delays on patients. GPs are starting to see the fatal consequences of a reconfiguration of a health service that has been largely focused on Covid-19 – and patients with conditions unrelated to coronavirus are suffering.
One GP partner from Glasgow, who asked not to be named, tells Pulse: ‘We have had two sudden deaths at home within the past two weeks. As a small practice, we expect a handful of such deaths in a year. I expect this to continue.’
We have had two sudden deaths at home within the past two weeks
GP partner in Glasgow
The GP’s practice serves 2,300 patients. One death is likely to have been caused by an MI, and the other related to a stroke and alcohol misuse. The GP adds: ‘The deaths were unexpected in that they weren’t attending with symptoms and the patients were not of advanced age.’
This experience is being reflected in national figures on excess deaths. Data from the Office for National Statistics show that between the week ending 27 March and 8 May in England and Wales, there were 83,815 non-Covid-19 deaths – 12,388 more than would normally be expected. Scotland and Northern Ireland report similar experiences. This is all the worse given that deaths in January were down on the five-year average.
Nuffield Trust think-tank director of research John Appleby says some excess deaths may have been mistakenly classified as unrelated to Covid, but even so, the levels of mortality are ‘unprecedented’.
And restrictions on NHS services and patients not reporting symptoms are likely to be contributory factors. He says: ‘The really worrying question for the NHS is, are the measures being taken to create more capacity – such as slowing routine work and cutting diagnostics – creating a side-effect, now seen in the death statistics?’
The worrying question for the NHS is, are the measures… creating a side-effect, now seen in the death statistics?
This may just be the start. In a survey of 675 GPs conducted by Pulse between 17 and 21 April, 85% of respondents said they ‘strongly’ or ‘somewhat’ agreed that patients are staying away from seeking help in general practice as a result of concerns about coronavirus or burdening the NHS.
The decrease in GP appointments backs this up. The statistics for England show an inevitable increase in remote consultations, but a 26% drop in total appointments in the last week of March, compared with the same week in 2019.
This fall is evidenced by the numbers of referrals: in England, GP referrals to secondary care were down by 32% in March – just 800,000 were made, compared with 1.2 million in March 2019. In Northern Ireland, the number of GP referrals for new consultant-led appointments has shrunk by 50% across a range of specialties.
The true effects of this might only be seen in the medium to longer term, says Professor Willie Hamilton, a GP and primary care diagnostics professor from the University of Exeter. ‘Symptoms can be present for months before something goes wrong,’ he says.
Certain cancers, such as colorectal, typically develop in older patients – the cohort most likely to be avoiding the NHS.
Professor Hamilton adds: ‘Given the median age of colorectal cancer diagnosis is 72, they are in the group most “scared” of Covid, and some really are terrified of entering healthcare despite bad symptoms. It’s a balance, and not easy for the patient, or clinician.’
The median age of colorectal cancer diagnosis is 72, they are in the group most “scared” of Covid
Professor Willie Hamilton
Singlehanded south London GP Dr Maria Carrasco says it is only through proactively checking in on her vulnerable patients through home visits that she is spotting potential long-term problems.
She says: ‘One patient said “oh, by the way my leg is a bit swollen” and it ended up being a DVT. The people you need to be seeing may be those who’ve been told they should stay at home to save the NHS.’
Patients are also refusing to go ahead with tests, for fear of catching Covid-19 by coming into contact with NHS services. Dr Carrasco adds: ‘I’ve rung and told a patient on methotrexate they haven’t had a kidney function test for ages.
‘There’s only so much you can defer. At some point patients who are on high-risk drugs or warfarin for example need to have their monitoring checks done. But I’ve had patients, ranging from young to old, refusing to have these checks done because they are scared.’
I’ve had patients, ranging from young to old, refusing to have checks done
Dr Maria Carrasco
But even when patients do present, some GPs’ hands are tied when it comes to referrals. For example, in May, NHS Mid and South Essex CCGs told GP practices to hold off referrals, despite NHS England guidance advising secondary care to accept them.
Meanwhile in London, the NHS England regional team raised the threshold for two-week wait referrals for lower gastrointestinal cancer.
One of the region’s hospitals, Epsom and St Helier University Hospitals NHS Trust, informed GPs in May: ‘All high and low risk patients as defined by NHSE guidelines now need to have a FIT test first, except where a patient presents with a rectal or anal mass, where these patients should be referred on a two-week rule pathway as normal.’
Patients without a positive FIT test would have to be monitored by the GP, the trust said, contrary to NICE guidance that referrals can be based on symptoms including changes in bowel habit or unexplained rectal bleeding.
Professor Hamilton says using a FIT test can be a ‘sensible’ way for hospitals to triage referrals during the pandemic. But, he stressed: ‘The FIT negatives are unlikely to have cancer, but you can’t rule it out definitely. So, GPs are being asked to safety-net these. How? That’s not agreed, and is up to the individual GP.’
Meanwhile GPs in east London were concerned that ‘hundreds’ of cancer referrals – including those deemed urgent – were being rejected by Whipps Cross University Hospital, against GPs’ advice.
Doctors in one region are so concerned about rejected radiology referrals, they are demanding a full investigation into the conduct of their local NHS hospitals.
Hundreds of radiology referrals have been returned by Birmingham trusts
Dr Robert Morley
Birmingham LMC executive secretary Dr Robert Morley says: ‘Hundreds of radiology referrals have been returned by Birmingham trusts – many of these were investigations for potential malignancy.
‘The LMC’s position is that all these unacceptable incidents must be fully and properly investigated.’
As well as patients’ long-term health, GPs’ have told Pulse their other lingering worry is that they will be deluged as patients return in high numbers when restrictions are fully lifted.
The RCGP warns of an increase of patients, as paused services, such as screening and health checks, resume and new patients present with mental health problems triggered by the pandemic.
Chair Professor Martin Marshall says: ‘Surgeries may see an influx of patients, with physical and mental health problems, as the easing of lockdown makes them more comfortable about addressing non-Covid-19 medical needs, and other services are re-introduced.
‘There may also be an increase in people seeking help for mental health problems that have come to the fore during, or as a result of, the pandemic.’
East London GP and chair of Doctors in Unite Dr Jackie Applebee adds: ‘We are two months into lockdown and I’m worried about the patients who’ve been hanging on to persistent symptoms and having a big mass of them as they return.’
GPs are likely to encounter a substantial expansion in ICU survivor caseload
Faculty of Intensive Care Medicine
She warns that there is a large cohort of patients with long-term conditions who have gone unmonitored as testing services were paused, saying they will all need to be seen in person in due course.
NHS England’s primary care director Dr Nikki Kanani said GPs were already seeing a lot of patients return. At an NHS England webinar on 19 May, she said: ‘We’re all experiencing an increase in business in practice. It’s certainly back to pre-Covid levels, if not slightly higher.’
And there will also be demand from patients affected by Covid-19, likely to be concentrated in general practice.
The Faculty of Intensive Care Medicine is warning this will affect GP workload: ‘Primary care and community services have a very significant part to play in supporting both patient and family across the recovery trajectory. GPs are likely to encounter a substantial expansion in ICU survivor caseload.’
Meanwhile, physiotherapists expect ‘enormous’ demand for rehabilitation for Covid survivors. Susan Hayward-Giles, of the Chartered Society of Physiotherapists, told the Independent: ‘We are incredibly worried about what might be a tsunami in demand.’ This has implications for physiotherapy in primary care networks.
With the Government seemingly intent on easing lockdown, GPs are left to worry that the problems caused by the pandemic are only just starting.
‘Patients are coming to harm by staying away’
dr faraz majid 200x200px
In the past month alone, I have come across several cases where patients have come to harm as a result of this lockdown and the way the NHS is operating currently.
One patient, a man in his 60s, had been self-isolating at home for six weeks with a non-resolving cough before collapsing. On admission he was found to have a large pleural effusion and later diagnosed with metastatic adenocarcinoma.
Another, a lady in her 90s, had experienced abdominal pain for two weeks, misdiagnosed over phone and video as a mixture of constipation and reflux. She was finally admitted after the pain became ‘unbearable’ and was revealed to have multiple gallstones and subsequently developed cholecystitis requiring ERCP.
A third patient, in her early thirties with no significant medical history, rang the surgery complaining of central chest pain radiating to her left shoulder and associated shortness of breath. She was reluctant to go to hospital due to fear of coronavirus and had only rung the surgery after several hours of worsening pain. A 999 ambulance was strongly advised but it is alleged the call handler told the patient they were on escalation, that none was available and she should attend A&E in a taxi.
On arrival in A&E, the patient was apparently deemed low risk and made to wait several hours. She was subsequently diagnosed with a transmural infarct. There will be many similar cases across the country, some with worse outcomes, including death.
Dr Faraz Majid is a sessional GP in Yorkshire
How we acted to minimise the long-term effects of lockdown
dr vasu siva 200x200px
We were concerned about the long-term effects – social and medical – of the lockdown on our vulnerable patients. So we decided to do something about it.
In March, we did a search run on SystemOne to identify vulnerable patients and categorised them into groups: >90 years; 80-89 years; 70-80 years; mental health and learning disability; and more than one health condition.
The healthcare assistants identified those patients who need review of long-term medical conditions, including medication review, and those patients receive a call from our clinical team to address any medical concerns. The clinical manager and the pharmacist can then allocate patients for review in their clinic.
The team also completes care plans for the patients and our GPs are able to assess the patients that fall under their clinical area of interest.
We have also been using AccuRx chain SMS to encourage our patients to do home BP monitoring.
A monitoring sheet with instructions on how to check BP using their own BP machine twice a day is sent to patients and the completed template returned to the surgery nursing team, enabling us to monitor hypertensive patients.
Dr Vasu Siva is a GP partner in west London