Written evidence submitted by Asthma + Lung UK
- Asthma + Lung UK are pleased to submit written evidence to this inquiry.
- The COVID-19 pandemic has had an enormous impact on the care of people with lung disease. While respiratory data is extremely poor in comparison to other conditions, we know that:
- In 2020 there was a 51% reduction in Chronic Obstructive Pulmonary Disorder (COPD) diagnosis compared to 2019, meaning that around 46,000 people missed out on a diagnosis in England, a much higher drop than seen for comparable conditions, such as diabetes[i].
- We think it likely that approximately another 46,000 people missed out on a diagnosis of COPD within 2021 because of the continued lack of spirometry testing, which is still an issue of concern as we end 2022.
- In August 2021 there continued to be a marked reduction in asthma related appointments within primary care,[ii] with activity around half the expected levels for asthma, and even lower for all respiratory system diseases (which will include COPD).
- We know that before the pandemic 1 in 3 people waited more than six months for a diagnosis with 1 in 6 waiting longer than a year. This issue has only increased since COVID-19, and an average of over 3,000 respiratory patients per week missed out on a referral for specialist care, treatment or diagnosis in England during 2020.[iii]
- Of patients with a diagnosis, 85% of have experienced some sort of delays or disruptions to their care in 2021.[iv] While the use of remote or virtual appointments has been both useful and necessary, there are concerns about the quality of these and the fact that conducting proper inhaler technique checks virtually is unlikely to be effective. This drop in the standard of care is likely to result in worse outcomes, and additional demand on the NHS.
- Clearly this is an extremely difficult backdrop, and pre-pandemic the UK had the highest number of lung disease deaths in Western Europe,[v] with respiratory hospital admission rates in England and Wales rising by 104.7% between 1999 and 2019.[vi] We do not believe that, either pre or post COVID, respiratory conditions have received the attention and funding commensurate with their significant impact on individual patients and the NHS as a whole.
- We recommend that GPs proactively contact high risk patents, offering them an annual review and inhaler technique check to ensure that their condition is under control. Where further diagnostic tests are needed they should be prioritised. In addition they should encourage them to have a flu jab this coming winter. These actions will help to prevent exacerbations and prevent additional pressures on the NHS.
- We recommend that local NHS bodies such as Integrated Care Systems prioritise and sufficiently fund high quality Pulmonary Rehabilitation (PR) for people with lung conditions, whether delivered face-to-face or remotely. PR is a key method of managing respiratory conditions and preventing exacerbations, which increase the demand on the NHS.
- We recommend that statistics on spirometry testing are made public, with NHS England doing more to encourage its full resumption.
- We recommend that Community Diagnostic Centres are implemented as originally intended, with three hubs per million people.
- We recommend the government ensure NHS funding commitments for respiratory programmes in the Long-Term Plan are honoured, and that extra funding is provided to help people manage their conditions at home.
- To effectively deal with the backlog of care, we recommend that NHS England publish a respiratory recovery plan with a special emphasis on restarting spirometry in primary care and complete with targets, similar to the cancer recovery plan published by NHS England.
- We recommend that the national breathlessness pathway be introduced and properly implemented nationally by NHSE as soon as possible, compete with waiting time standards and incentives for speeding up the diagnosis and treatment pathway, as is the case with cancer treatment.
Design of recovery plans
- The NHS ‘Delivery plan for tackling the COVID-19 backlog of elective care’ published in February of this year made welcome recommendations to boost diagnostic capacity via Community Diagnostic Centres (CDCs). These are not designed to replace diagnostics within primary care, but to be implemented alongside this to boost diagnostic capacity and allow patients to access a wide range of tests under one roof. In June 2022 there were 90 CDCs in operation,[vii] with a further two coming online by September,[viii] while the commitment for 160 fully operational CDCs across England spans until 2025.
- As mentioned in 2020 there was a 51% reduction in Chronic Obstructive Pulmonary Disorder (COPD) diagnoses compared to 2019, meaning that around 46,000 people missed out on a diagnosis in England.[ix] This data was only made available under special COVD reporting measures, and we attribute the drop in diagnosis to:
- Patients not coming forward for diagnosis and treatment, for a range of reasons. Our 2022 COPD report, Delayed Diagnosis and Unequal Care (2022), surveyed over 6500 people and found that and found that for those diagnosed in past 2 years barriers to diagnosis included 34% not knowing what COPD signs were, 25.6% having difficulty getting appointments.
- The fact that spirometry, a key lung function test, was stopped because of infection control concerns. Despite guidance being produced to counter these concerns, anecdotal evidence shows us that the restart of spirometry within primary care continues to be extremely slow, but there is no published data on this.
- When raising concerns about the lack of spirometry in 2021 the only answer we received was that CDCs would deliver the capacity needed to address this problems. While we fully support CDCs and do see them as a potentially transformative in the longer term, we think it clear that cannot be viewed as realistic short-term solution to the huge drop in respiratory diagnosis outlined in the introduction. We believe that it has been clear since 2020 that a more concerted, nationally produced plan was needed to address the immediate lack of spirometry testing.
- Indeed, in some aways CDCs have confused the situation, with some areas not taking action to restart spirometry locally in the mistaken believe that CDCs will take on this role when they become established, even though this may not be for some time, potentially years. There is a real need for better communications with local NHS systems on this issue so that the topic of CDCs does not negatively impact upon local planning.
- While no data is available, we know from discussions with clinicians that in many areas across England patients still have no access to spirometry testing, something that is essential for a diagnosis of COPD. While clinicians can override this and diagnose without having performed spirometry (and our survey found that only 50.4% of people with COPD diagnosed in the past 2 years reported having spirometry done as part of their diagnosis, this is an extremely undesirable situation and will likely result in misdiagnoses and patients will not have a baseline lung function measure. Again, while no data is available, there is likely to be moderately sized cohort of patients who have been diagnosed since the pandemic started without spirometry, some of whom will have been misdiagnosed and will therefore not be revived adequate treatment.
- While spirometry is within the Quality Outcomes Framework for the diagnosis of COPD, meaning that GP practices need it to be conducted to receive QOF points, spirometry isn’t a commissioned service within primary care. There are a number of ways in which spirometry can be delivered in primary care:
- Some will deliver it at a loss/without commissioning it, to ensure that it is available to patients as needed
- Some will commission it specifically as a locally enhanced service (LES), something that requires funding
- Some will refer into secondary care for the test to be conducted there. This will not be possible in all areas
- Within secondary care spirometry will be part of a wider physiological testing services, making it more efficient to deliver, and hospitals also receive a tariff payment. Clearly this is in contrast to the situation in primary care, where it is not commissioned, and if it is to be commissioned as a LES, additional funding must be found.
- It is this discrepancy in funding that appears to be behind much of the problem; given the current severe lack of capacity within primary care we are aware of some groups who take the view that without a payment to cover their costs, patients should be sent to secondary care for their spirometry.
- In practice this means that spirometry is simply not available in many areas. From a patient perspective it is not acceptable that this disagreement has been allowed to go on so long without resolution.
- This payment/incentive discrepancy predates COVID, but in the difficult post pandemic context it has become far more problematic, and it should be stated that there are other complicating factors that stretch back pre pandemic. However, there has been no central plan to make progress on this issue despite it clearly being a significant problem. We have been urging NHS England to take more concerted action for a long time, and believe that the lack of this has contributed to these problems.
- Via the Taskforce for Lung Health, we are working to promote best practice and encourage the restart of spirometry, running a 3 hour webinar in December, and are pleased to be partnering with NHS England on this. However we still think that there is a real need for more concerned national approach to overcoming this issue, something that is essential to restoring respiratory services and making progress on the backlog of care. There is a significant consensus within the respiratory community that far more needs to be done on this issue.
Early progress: Diagnosis
- We know that current asthma and COPD activity is lower than pre pandemic levels, and that in part this is down to patients both not coming forward for treatment, and finding it difficult to get a GP appointment when they do want to come forward for help. It is therefore hard to quantify true levels of need.
- We are concerned by the additional barriers to diagnosis and care that this scenario creates for those with lung conditions; we know that low awareness of lung health and when to seek help is a significant barrier and results in delayed diagnoses. For example, our 2022 COPD report, Delayed Diagnosis and Unequal Care (2022), surveyed over 6500 people and found that:
- 36.1% waited over a year before seeking medical help
- 25% of those surveyed waited 5 years or more for a diagnosis
- 12.4% waited more than 10 years for a diagnosis
- Clearly most of these individuals became aware of their symptoms pre-pandemic, but the perception that GPs are already extremely busy, and the reality that getting an appointment is often very difficult, seems likely to make this difficult situation worse, in addition to other factors mentioned above such as patients not knowing symptoms, and some being misdiagnosed or initially sent away by GPs.
- As mentioned previously we know that there was a 51% reduction in COPD diagnosis in 2020 compared to 2019,[x] and that spirometry testing, which is essential for diagnosing COPD, is still not universally available.
Early Progress: Respiratory care in primary care
- The majority of care for respiratory conditions such as asthma and COPD takes place within primary care, and plays an important role in helping patients to manage their condition and stay well and out of hospital, otherwise known as ‘secondary prevention’. Problems in the provision of respiratory care within primary care lead to greater downstream pressures on the NHS.
- NICE outline ‘5 fundamentals’ of care that all COPD patients should receive each year, a basic level of care comprising elements such as provision of a self-management plan, vaccinations against flu and pneumonia, referral to smoking cessation services, pulmonary rehabilitation and managing other co-existing medical problems.
- Provision of these 5 fundamentals has always been poor, but in 2021 only 17.6% of COPD patients responding to our survey had received all 5 fundamentals of care, even fewer than the 24.5% who reported receiving these in 2020.
- Respondents who reported receiving the basic standards of COPD care had fewer exacerbations, were better able to self-manage their condition, and better understood what to do when their symptoms worsened, demonstrating that this lack of basic care has a real impact on both patients, and the wider NHS.
- Peer reviewed research published in the British Medical Journal has found that treating COPD patients in the UK according to NICE guidelines compared to current clinical practice could result in estimated annual savings of £46.9 million, primarily resulting from reductions in hospitalisations and antibiotic use[xi].
- Other research as demonstrated that once a COPD patient has one exacerbation the experience higher rates of future exacerbations with increasing frequency and severity, and are also more likely to die from all-cause, COPD-related, and cardiovascular-related mortality in a graduated fashion with increasing exacerbations[xii]. This again highlights the importance of primary care delivering the NICE 5 fundamentals and helping COPD patients to manage their condition properly and stay well. Once this breaks down and patients become more unwell, their use of NHS resources significantly increases.
- The UK has one of the worst asthma death rates in Europe, with two thirds of these deaths avoidable with improvements to basic care.[xiii] Asthma and Lung UK’s report, Fighting back: transforming asthma care in the UK (2022), surveyed 8,300 people and found that only 30% of people with asthma received basic care as recommended by NICE in 2021, the lowest since 2015. This equates to around 3.8 million people with asthma not getting even the most basic elements of care.
- Research has estimated that the cost per person of uncontrolled asthma is double that of well-controlled asthma.
Early progress: access to secondary care and waiting lists
- From March 2020 to March 2021, the average weekly respiratory referrals were over 3,023 while between October and December 2019 the average weekly referrals were 4,684 meaning on average 1,661 fewer referrals per week since the pandemic began.[xiv]
- In addition, there were just under 62,000 (61,910) fewer hospital appointments for respiratory conditions in 2020/21 compared to 2019/20, and 1.5M fewer than the 5 year average.[xv]
- As mentioned previously, these reductions may be due to fewer patients presenting for care because they are either not coming forward, or struggling to access primary care. We think it extremely likely that these missing patients are in need of care and simply not receiving it, meaning that their condition will worsen without treatment and when the do present to the NHS their situation will be more complex.
- There are 178,631 people with a diagnosed lung condition on a waiting list as of September 2022. While the average waiting time is 13 weeks, which is below the 18 week target:
- 35% (63,280) are on a waiting list for over 18 weeks
- 2% (4000) are on a waiting list for over 1 year[xvi]
Early Progress: Multidisciplinary teams (MDTs) within secondary care
- MDTs should include expertise from each COPD care discipline, yet in 2021 only 10.9% were attended by a GP, 10.9% by an occupational therapist and 14.9% by a psychologist. In 2021:
- 35.2% of services conducted MDT meetings, compared to 48.6% in 2019
- 32.1% of English services offered time during MDT meetings to develop integrated models of care which could improve services[xvii]
- We are concerned that the lack of proper MDTs reduces the effectiveness of the care patients receive within secondary care.
Early Progress: Experiences of secondary care
- Asthma and Lung UK’s report, Fighting back: transforming asthma care in the UK (2022), found that:
- 62% of those who received emergency care did not get NICE-recommended follow-up within 2 working days
- 42% of those surveyed did not feel supported after using emergency care
- The 2021 Getting it Right First Time report in to Respiratory Medicine found that only 10 NHS trusts achieved the ambition to have over 70% respiratory patients being managed by a specialist respiratory team, with the average being 38%.[xviii]
- The National Asthma and Chronic Obstructive Pulmonary Disease Audit Programme (NACAP) measures hospital services providing asthma and COPD care against six KPIs. The 2021 report found that:
- 45% offer 7-day respiratory specialist advice
- 80.5% have a designated lead for both COPD and asthma
- 42.1% offer a pulmonary rehabilitation service to COPD patients within 30 days of discharge, a reduction from 45% in 2019.
- 35.2% have weekly MDT team meetings for COPD patients
- 42.1% have a transition service from paediatric to adult asthma services, an improvement from 30% in 2019.
- 91.8% offer access to a severe asthma service[xix]
- Only six services across England and Wales met all six KPIs, and a number of these figures are worryingly low. Of particular concern is the lack of access to pulmonary rehabilitation, as this aids self management and can help keep patients out of hospital.
- Looking specifically at asthma, only 9 out of 129 NHS services met all 5 KPIs for asthma care and treatment. There was no improvement in the provision of respiratory nurse specialists or designated named asthma leads. It was found that the presence of respiratory nurse increases likelihood of the correct diagnostic tools being used, with this being 74.3% with specialist nurses compared to 45.5% without, something that demonstrates the impact of appropriate specialist staffing. [xx]
Early Progress: Lung Transplants
- While lung transplants services are extremely specialist, levels of transplant operations do reflect wider conditions within the health system as operations can only be conducted on patients who are successfully referred through to these specialist services.
- The graph below is taken from page 70 of the NHS Blood and Transplant Annual Report on Cardiothoracic organ transplantation 2021/22, published this September.[xxi]
- As can be seen numbers of non-urgent transplants dropped significantly in 2021 and reduced slightly further still in 2022. There are a number of factors at work here.
- On the one hand this can be explained by the positive impact of the drug kaftrio which is proving extremely effective at for certain cystic fibrosis patients, meaning that some who would have needed a lung transplant a few years ago are able to now avoid this.
- However, the positive impact of kaftrio should mean that more transplants are available for patients with idiopathic pulmonary fibrosis (IPF), a progressive, life-threatening, interstitial lung disease with a median survival of only 2 to 3 years. While referrals from this group are starting to pick up unfortunately not enough are coming through and we are aware of transplant centres who have capacity from early 2023 and are not currently able to find patients to fill this. This is due to problems downstream in primary and secondary care and IPF patients not being diagnosed, with the lack of spirometry testing probably a part of this, and therefore not making it through the patient pathway towards the transplant referral pool. Another problem is IPF patients being referred too late, when their condition has progressed past the stage when a transplant is possible; while this is not a new issue problems in the IPF patient pathway are a likely contributing factor.
- This example demonstrates the impact that downstream problems with respiratory diagnosis and referrals cause for IPF patients already facing a prognosis of only 2 to 3 years if diagnosed early.
Early Progress: Conclusion
- Prior to the pandemic respiratory care was far from perfect, and there were many opportunities to improve this via better diagnosis and better secondary prevention, helping to keep those with a diagnosis as well as possible and thus out of hospital.
- Post pandemic the situation has clearly worsened for patients, and unfortunately the need to improve standards of care is all the greater. In this scenery it is extremely likely that more and more of those with respiratory conditions are either going without any are, or are receiving care at lower than recommended levels, and are therefore more likely to deteriorate and end up in a more complex position where they are more difficult and expensive for the NHS to treat.
[i] Department for Health and Social Care and the Office for National Statistics. 2021. Direct and Indirect health impacts of COVID-19 in England - short paper. Department for health and Social Care. Accessed here (October 2021)
[iii] Taskforce for Lung Health data analysis. Available from: https://www.blf.org.uk/taskforce/get-in-touch/media/patients-needing-urgent-care-for-lung-conditions
[iv] Asthma UK and the British Lung Foundation surveyed 8495 people with lung conditions from 10 July to 15 July 2021.
[ix] Department for Health and Social Care and the Office for National Statistics. 2021. Direct and Indirect health impacts of COVID-19 in England - short paper. Department for health and Social Care. Accessed here (October 2021)
[x] Department for Health and Social Care and the Office for National Statistics. 2021. Direct and Indirect health impacts of COVID-19 in England - short paper. Department for health and Social Care. Accessed here (October 2021)