A long wait to get better

by Peter Blackburn

It has been six years since a referral-to-treatment target for cancer patients in England was last met. With a lack of staff and equipment, and now the COVID backlog, it is little wonder outcomes have lagged behind other countries

Location: UK
Published: Friday 12 November 2021

One of two people in the UK will be diagnosed with cancer in their lifetime. It is a striking – and well-publicised – statistic, but it is just one of many which grab the attention when it comes to cancer care and outcomes in this country.

Figures cited in a publication earlier this year by the Nuffield Trust show the UK significantly lagging behind other countries. The five-year survival rates cited for the UK were 85.6 per cent for breast cancer (90. 2 per cent in the USA), 63.8 per cent for cervical cancer (71.4 per cent in Japan) and 60 per cent for colon cancer (70.7 per cent in Australia).

While these figures, the most recent that were cited, were for 2010-14, it is not unreasonable to think that the intervening years, during which budgets and staffing have been under exceptional strain, have seen little relative improvement.

The picture in the UK becomes increasingly concerning when the effect of the COVID-19 pandemic is taken into account.

Data for August suggests there were 15,800 fewer people referred via an urgent suspected cancer referral in England compared with what NHS England modelling would have expected if the pandemic hadn’t happened.

And there were five to 10 times more patients waiting six weeks or more for diagnostic tests in England at the end of August 2021 compared with the same month in 2019.

Cancer waiting time figures for England, covering last August, were recently released and show that none of the three primary targets – urgent referrals to be seen by a specialist in two weeks, 62 days from urgent referral to start of treatment and 31 days between agreed treatment plan and the start of treatment – were met.

‘We’ve seen impact across the whole spectrum,’ Cancer Research UK’s head of strategic evidence Jodie Moffat and early diagnosis programme lead tells The Doctor.

‘It’s hard to pin down what the impact will be in terms of outcomes but we are anticipating we will see a negative impact in terms of stage and negative outcomes and we are in a position where we risk cancer survival going backwards.’

Dwindling workforce

This is not just about the pandemic, though. That 62-day target has not been hit since August 2015. And the data covering the comparisons with other countries looks similar through previous years.

The problems holding the UK’s cancer care and outcomes back are familiar themes to those who work across health and care or who know the sector – with dwindling workforce, lack of capital investment and capacity far outstripped by demand.

There are other factors at play too, including a culture among the public of being slow to seek help and, for many, the reality that clinicians often end up becoming gatekeepers of NHS services given the paucity of capacity.

GP Richard Roope, who is also adviser to the Wessex Cancer Alliance, says the problems can be split into three categories: patient factors such as members of the public being ‘more stoic’ and ‘less forthcoming’ in this country, professional factors including the UK having fewer physicians per 1,000 patients than almost all comparable countries and thus shorter consultation times, and process factors.

We are in a position where we risk cancer survival going backwards
Jodie Moffat

On those process factors Dr Roope says: ‘As GPs we have access to less diagnostics than our colleagues in other countries which means we are flying blind for longer. If you look at the whole area of diagnostics we have less kit than nearly every country in Europe. We are equal bottom with Moldova.’

Dr Roope, who works as part of the local RIS (Rapid Investigation Service), also known as an RDC in other parts of the country, adds: ‘Fundamentally, across the NHS, in every sector, demand is outstripping supply. We have sleep-walked into the workforce issues we have got.’

Andrew Millar is clinical lead for the multidisciplinary diagnostic centre at University College London Hospital and is a consultant gastroenterologist and hepatologist.

Dr Millar says there are delays throughout the cancer pathway in this country, from the point of the patient recognising symptoms as serious to having those symptoms assessed, and then access to secondary care.

Dr Millar blames lack of specialists and lack of diagnostic equipment in particular for delays in diagnosis, which he ‘suspects is probably related to the worse mortality we have than some countries’.

It is in this context that the NHS long term plan’s stated ambitions sit – that 55,000 more people each year will survive their cancer for five years or more by 2028 and that 75 per cent of people with cancer will be diagnosed at an early stage, stage one or two, by the same year.

Ambitious targets

The second of those stated aims is particularly striking given that the current figure is around 55 per cent – with the effects of the pandemic still to be fully felt and understood in the statistics.

‘That ambition is probably unrealistic – it is probably unachievable,’ Dr Millar says. ‘But it is good to set targets. We are lagging behind other health economies and if we don’t set ourselves these targets, we are probably less likely to achieve better outcomes.’

42466 Richard roope ROOPE: ‘We have less kit than nearly every country in Europe’

The ambitions may be ‘unrealistic’, but improvement is important, regardless, so if any progress is to be achieved what are the key areas where work is required? Cancer Research UK has a manifesto for change which includes implementing and improving life-saving cancer screening programmes, informing and empowering people to respond promptly to signs and symptoms and health professionals being alert to the risk of cancer and being supported to act, including having access to tests and test reports, and pathways that suit the range of patients they see.

The charity also wants to see research and innovation for the future, to ‘fully realise the vision of bringing forward the day when all cancers are cured’.

We have sleepwalked into the workforce issues we have got
Dr Roope

Dr Moffat says: ‘A challenge to achieving early diagnosis is that there is no one silver bullet. This is going to mean investment in diagnostic equipment, it’s going to need workforce, it’s going to need cross-NHS and cross-community working.

None of these things are easy, particularly at a time when there is a lot of pressure in the system of trying to recover from COVID-19.

But we must continue to look forward and to bring about the changes needed to ensure everyone with cancer gets the best possible care.’ Both Dr Roope and Dr Millar have been involved in setting up, and working in, new clinical pathways which aim to address many of those problems.

In Wessex Dr Roope is part of the RIS which is staffed by two GPs, three advanced nurse practitioners and overseen by a hepatologist, colorectal surgeon and a urologist. The new pathway has been up and running for six months and allows GPs to refer patients who have serious but not site-specific symptoms which could be cancer, like vague abdominal pain, weight loss or a raised platelet count.

In the past – and in many areas of the country still – GPs might have to make three or four referrals for these sorts of patients before eventually finding the right pathway, potentially delaying things by two or three months.

Prompt action is key, as Dr Roope says: ‘For every week a diagnosis is relayed you reduce the 10-year survival by one per cent.’

Fast-track referral

The Wessex RIS is delivered at significant scale across a wide geographical area and staff have the luxuries of a 35- or 40-minute consultation and licence to order ‘pretty much any test’ in a patient’s local hospital.

That means a much more thorough understanding of the patient’s needs, quicker access to diagnostics and a much speedier path to treatment.

‘The feedback we get from patients is amazing,’ Dr Roope says. ‘It is essentially breaking down that primary/secondary care divide and working as a unified team. It is working well and the patients appreciate it.’

Dr Millar is a clinical lead for the North Central London Cancer Alliance – overseeing new pathways like MDCs (multidisciplinary diagnostic centres). The RDC at University College London Hospital, the Royal Free and North Middlesex, where Dr Millar is based, allows GPs to refer patients by email if they suspect gastrointestinal cancer.

The service provides a fast-track diagnosis for patients who are often difficult to diagnose. Patients attending will usually attend the RDC within two or three days of referral and have had diagnostic tests within days which are then followed up by a multidisciplinary team.

We are lagging behind other health economies
Dr Millar

Dr Millar says: ‘There’s no doubt GPs are faced with patients who they think might have cancer and they are puzzled as to which pathway to send them to. The GP concern, or gut feeling, is very good. We need to have pathways that allow that gut feeling to be expressed into rapid diagnostics.’

Above all, though, in cancer care and outcomes, as in so many aspects of the NHS, workforce may be the main factor.

There are simply too few staff in comparison with the need from patients. Investment in equipment needs to be accompanied by workforce, primary care needs additional workforce to provide the time and timeliness complex consultations and serious diagnoses require and new ways of working may be capped in terms of their effect if staff are always pulled from existing work where they are also needed.

42458 Andrew millar MILLAR: ‘A challenge to achieving early diagnosis is that there is no one silver bullet’

BMA council chair Chaand Nagpaul said the workforce crisis included a severe shortage of GPs, critical in the early diagnosis of cancer, and yet who were forced to give short consultations where it can at times be impossible to give patients the time to divulge symptoms.

He also cited the UK being at the ‘bottom of the league’ when it came to CT scanners and MRI provision.

Workforce barriers

The BMA is calling for increased Treasury investment into the medical workforce to fund increases in medical school, foundation programme and specialty training places, alongside investment in the staff and infrastructure to deliver this.

The association is also demanding investment in retention initiatives including removing punitive pension taxation rules so older doctors can remain in work flexibly and a duty for the secretary of state to publish regular, detailed and publicly available health and care service workforce assessments which inform current and future recruitment needs.

The workforce issues are exacerbated by Government policy around immigration, too. Dr Millar says: ‘You do need people to go with the increase in kit and the workforce challenge is going to be huge. I’m going to be utterly non-political… obviously if we are able to access trained healthcare workers from other places in the world to run the diagnostics then that would help offset the difficulties. Of course, we don’t have that because of the circumstances in Britain today.’

We need to have pathways that allow that gut feeling to be expressed into rapid diagnostics
Dr Millar

The challenges in cancer care and outcomes are huge and the ambitions being outlined are only matched by the obstacles in the way of progress.

However, there is a significant degree of consensus about the path forward among those in positions of expertise – it is perhaps now a case of political will providing the much-needed support for that consensus.

If there is any sense of hope for future improvement it should be largely grounded in the work professionals are already doing in pockets of the country. Dr Roope is optimistic, having seen the improvements he, and colleagues, can make.

He says: ‘I am an optimist. I think what GPs and the profession have achieved in the past 18 months has been awesome. It’s all quite exciting and all targets are within reach if we can get a unified care system.’