“Silent scandal” of missing lung diagnostics in England’s most deprived areas—where respiratory disease is most prevalent – GWC Mag

Fifth biggest killer—yet patchy or unclear provision

Nearly 30 000 people die from COPD each year in the UK, making it the second greatest cause of death from lung disease after lung cancer and the UK’s fifth biggest killer. According to NHS England, “The annual economic burden of asthma and COPD on the NHS in the UK is estimated as £3bn and £1.9bn respectively. Both underdiagnosis and overdiagnosis of respiratory conditions leads to delayed treatment and increased chance of acute admissions.”4

The government’s major conditions strategy5 highlights the need for early and accurate diagnoses for people with lung conditions and one of the aims of Core20PLUS5 is to “narrow health inequalities” in chronic respiratory disease.6 A 2019 NICE guideline update states that spirometry should be performed for diagnosis of COPD and asthma7 and FeNO testing for a diagnosis of asthma.8

Spirometry is a lung function test that measures how much air a patient can breathe out in one forced breath. Tests were suspended during the pandemic because of concerns about infection risk (which have now been resolved). Asthma + Lung UK said this resulted in a 51% drop in COPD diagnoses in 2022. FeNO testing is a new diagnostic that measures levels of nitric oxide in a patient’s breath—high levels indicate the inflammation often seen in cases of asthma.

The BMJ requested information on access to spirometry through press offices and freedom of information requests from England’s 42 ICBs. We also looked at information the boards had put in the public domain around access to spirometry from general practice, and corroborated some ICBs’ depiction of availability of diagnostics in their regions by speaking with local GPs. Seventeen ICBs did not respond to The BMJ’s three requests for information.

Of the ICBs that did respond, The BMJ found that provision was patchy and the full picture unclear in West Yorkshire (West Yorkshire ICB), and that spirometry was no longer commissioned in Hampshire and the Isle of Wight. Hampshire and the Isle of Wight ICB said there was “no money” available to set up diagnostic hubs at primary care network (PCN) level, as some ICBs have done.

Humber and North Yorkshire ICB told The BMJ that it “did not commission spirometry as a local enhanced service” (LES) and did not have a clear picture of provision in its region. Derby and Derbyshire ICB could not give a picture of availability in its area; however, a Derbyshire based GP told The BMJ that she has no access to services to which to refer her patients.

Spirometry is not available for some patients in Devon (One Devon ICB). Katie Musgrave is a GP in Paignton who has been told that spirometry is not available for her patients in her NHS trust and that she has to diagnose COPD on a clinical basis.

Musgrave believes that without access to diagnostics “many GPs will tend not to make the diagnosis or begin treatment.” In Musgrave’s view, breathless patients not being adequately managed, or not being formally diagnosed, risks them developing “severe symptoms and exacerbations that contribute to morbidity and mortality.” She is seeing exacerbations in breathless patients in her practice.

Deprivation, lack of access, emergency admissions, deaths

In Cornwall, a region with high levels of deprivation and long waiting lists for lung condition diagnosis, the ICB does not commission spirometry and cannot give a clear picture of provision, although it says there is some coverage by CDCs. It adds that it is “considering options for commissioning spirometry in primary care and developing an integrated respiratory pathway with a recommendation for spirometry to be carried out in primary care.”

According to Office for National Statistics 2021 census data, 53.9% of households in Cornwall had at least one of the four measures of deprivation (unemployment, low educational attainment, poor household health, and overcrowded housing).9

Bob Hodges, 80, runs COPD patient peer support group Breathe Club Falmouth in Cornwall, which often receives patient referrals from secondary care (after six week NHS rehab ceases). Hodges has COPD after asbestos exposure during his career as a ship repair engineer—“occupational COPD is common down here”—and says that slow diagnosis can weigh heavily on patients. “Often they will see their GP for long term breathlessness and maybe get an inhaler but they don’t know what they’ve got, nor why,” Hodges says. “I do understand that GPs are stretched, though.”

Of the ICBs that didn’t respond to The BMJ’s request for information, the picture is bleak in Rotherham and Doncaster (South Yorkshire ICB), two regions with historically high levels of diagnosis of COPD because of large communities of former miners. Doncaster GP Dean Eggitt says that GPs in his PCN have no access to spirometry following the closure of services during covid. “We refer to secondary care and they send letters back saying, ‘It’s not our problem,’” he says.

In several cases screening trucks, part of an NHS lung cancer screening programme initiative,10 pick up a patient’s likely COPD and refer to Eggitt or other GPs in his PCN for diagnostic tests. “But there’s nothing we can do as access to spirometry is nil,” he says.

The 2021 ONS data show 34.7% of Doncaster’s residents are deprived in at least one measure,11 with the city ranking in the bottom 20% of local authority areas in England for health in 2021.12 NHS England’s own data rank Doncaster in deprivation quintile 1,13 in a one to five ranking based on the English indices of deprivation 2019.1415

Asthma + Lung UK tells The BMJ that many of the areas with the highest rates of emergency admissions and deaths from lung conditions are areas with higher levels of deprivation. Chief executive Sarah Woolnough says, “It’s clear that far too many people, especially those in poverty, are missing out on timely diagnosis and support because the provision of lung function diagnostic tests is currently not good enough.”

Increased requirements for testing

In England, spirometry has historically been delivered in general practices in primary care. Guidelines introduced from 2019, however, require staff using spirometry kits to be certificated by the Association for Respiratory Technology and Physiology (ARTP) in interpreting spirometry results and registered on the National Spirometry Register.16 This means that many practices that formerly offered this diagnostic now face high barriers to continue to offer it because they lack the funds and workforce capacity needed for training and registration.

While there is funding for CDCs and GPs are now able to refer to these hubs17 (see box 1), there is no ringfenced funding for spirometry in the NHS. With diagnostic backlogs building since the pandemic’s cessation of services, and patchy resumption of provision, GPs have been sounding the alarm about the spirometry crisis for months.1819 A national picture has been absent, however, and there are no central data available on spirometry provision. The BMJ’s inquiries are an attempt to build a picture of current provision across England’s IBCs. Similar problems around the patchy resumption of spirometry in general practice are evident in Scotland20 and Wales.21

Another BMJ finding was disparities of access to diagnostic services between more and less deprived areas within ICBs, including in London. North West London ICB told The BMJ that spirometry was included as a LES through respiratory diagnostic hubs, nine of which are currently operational. Aparna Pal is a GP in Ealing, an area within the ICB which is home to a large South Asian community with historically high rates of COPD diagnosis. She says, however, that her area is not adequately serviced by the hubs, which are too far away for patients in her area to travel to and overstretched by referrals from practices nearby.

Mathew, a GP in Brent who is campaigning for awareness of the spirometry provision crisis in primary care, is also within the North West London ICB. She says she had no access to spirometry for her patients for “several months,” even for patients who have been admitted to hospital with suspected COPD.

In West Yorkshire, a region with variable provision, some at-risk patients are being reached with a pilot spirometry bus service targeting those with COPD symptoms. The service is run by private provider Innovate Healthcare.22

There are deadly consequences of this postcode lottery for respiratory diagnostics. In an August report, Diagnosing the problem: Right test, right time,23 Asthma + Lung UK signalled concern about the knock-on effects of delayed diagnosis and access to care.

Without timely and accurate diagnosis, the report said, people with lung conditions do not get treatment for their symptoms, suffer acute and long term deterioration, and die early. In a patient survey that supported the report, 18.4% of respondents with COPD reported receiving best practice care in primary care according to the “five fundamentals” of COPD care outlined by NICE.24 Some 30% of patients with asthma reported that they had received best practice in care, defined as “an annual asthma review, inhaler technique check, and written action plan.”

Of those diagnosed with a lung condition in the two years to 2023 in Asthma + Lung UK’s patient study, 36.8% had waited for more than six months for a diagnosis. Some 18.2% of respondents said lack of availability of diagnostic tests was responsible for a lack of diagnosis.

The charity has produced a report on the impact of GPs having to diagnose lung conditions without diagnostics, published on 26 September.

Funding the way forward

Asthma + Lung UK tells The BMJ that the lack of clear data around spirometry gaps, “needs to be tackled urgently by ICBs” so they can plan services and make sure workforces are adequately trained for current and future demand. Crucial in the charity’s view is for NHS England to provide funding for quality assured spirometry at a primary care level, incentivising spirometry as a paid-for diagnostic test within the GP contract.

The charity’s report points out that with spirometry not commissioned, ICBs currently have to create a business case for including the test, a process Woolnough describes as “slow and cumbersome.” NHS England’s hope that PCNs will get spirometry off the ground in the face of workforce problems and with no funding for equipment, training, or registration is, Mathew points out, “a big ask, especially in more deprived areas and where infrastructure and strong leadership are lacking.”

Mathew is crossing her fingers that a new CDC at Willesden in north west London, in the process of being built, will accept referrals from her practice when it opens. She worries for the nation’s many undiagnosed as well as the stress on overstretched GPs. “In many parts of the country, spirometry access is sparse or even non-existent,” she says. “This has been the case for at least three years now and it’s high time this was prioritised by the government and NHS England.”

In Doncaster, GP Eggitt has negotiated off-label diagnostics for the patients who are most at risk of COPD, using staff who are not ARTP trained, which he says is “a sticking plaster tactic” in the face of an emergency. “What we need, rather than screening programmes that pile more work on GPs’ plates, is to commission spirometry, which is needed here and now for patients who will die of heart failure as their lungs are rotting.”