Written Evidence Submitted by Asthma UK and the British Lung Foundation

(CLL0030)

Summary

1. Asthma UK and the British Lung Foundation are pleased to submit written evidence to this inquiry.

2. Around 12 million people in the UK are affected by a lung condition, including asthma, COPD and pulmonary fibrosis. People with lung conditions have been told they are at an increased risk of developing severe symptoms if they contract COVID-19, meaning they are strongly advised to observe strict social distancing.[i] Approximately over one million people across the UK with a severe respiratory condition were also deemed by the government as ‘clinically extremely vulnerable’ (CEV) and advised to shield.[ii] [iii]

3. Our response responds to two of the inquiry’s identified areas of focus – the deployment of non-pharmaceutical interventions (shielding), and Government communications and public health messaging. The submission covers:
1. Identification of people with respiratory conditions recommended to shield, including issues with defining criteria and data
2. Government communications on shielding
3. Access to support services for people shielding

4. Despite good intentions, the shielding process was stressful and chaotic for people with lung disease. There were issues in identifying people recommended to shield. This led to delays and a gap of several weeks between shielding being announced and a final list developed of everyone who needed to shield. This could have left extremely vulnerable people at risk of exposure to COVID-19.

5. A Freedom of Information request made by Asthma UK and the BLF to NHS Digital for data on mortality and positive COVID-19 tests for respiratory patients on the shielded patient list (SPL) revealed that:[iv]
1. There were 4,045 deaths due to COVID-19 among respiratory shielders between March and the end of August, with a peak in early-mid April. This means around 1 in 10 of the total COVID deaths were among respiratory patients on the SPL.
2. 8,360 respiratory shielders tested positive for COVID-19 between the start of March and the end of September, again peaking between the end of March and mid-April.

6. This data has not been made publicly available yet, but we believe it shows that shielding came in too late and that shielding plans were insufficient to protect the most vulnerable people. It is important that lessons are learnt for the future from shielding plans during the first wave of coronavirus, to ensure we can better protect and support vulnerable people. Caveats to this data include that the methodology used to identify respiratory patients was incomplete, as set out in this submission.

Identification of people with respiratory conditions recommended to shield - issues defining shielding criteria

7. There were significant challenges in determining respiratory shielding criteria and identifying people with lung conditions who were advised to shield. The two crucial underlying issues were the poor state of respiratory data, and the absence of disease registries, and a lack of understanding of lung disease in government and the NHS. There were lengthy delays in identifying people and conflicting shielding criteria was published, which caused confusion and stress for people with lung conditions and may have left some people at very high risk but unable to protect themselves.

8. A lack of knowledge in government about the variety, prevalence and severity of different lung conditions severely hampered the process of defining shielding criteria. When shielding was first announced the criteria were vague and did not provide a specific definition of severe COPD or severe asthma, the latter of which is particularly hard to classify.

9. Alongside respiratory experts, Asthma UK and the British Lung Foundation agreed a detailed set of criteria with NHS England. However, conflicting criteria were then developed and published by different bodies (NHS Digital, NICE, RCGP, British Thoracic Society, RCPCH). This resulted in a great deal of confusion for patients and health care staff who weren’t sure if they, or their patients, should shield or not. Our helpline and social media channels were inundated with thousands of shielding queries during this time, many of which we were unable to help with due to the uncertainty with criteria. The number of weekly calls made to our helplines in the week commencing 30 March was up 557% on an average week.

10. For example, a variety of different criteria was used by different organisations to define severe asthma at various stages during the process:
1. Patients on high dose inhaled steroids plus another controller – originally recommended to shield, advice then changed and we were informed that only those identified centrally by NHS Digital would receive shielding letters. NHS Digital used the criteria of those on inhaled steroids plus a controller and continuous oral steroids.
2. Previous hospital admission for asthma in the last 12 months – this was originally included in one set of criteria and then later removed.
3. Patients on biologic treatment – these people are under the care of a severe asthma specialist but were missed off shielding lists until a later search of patient records.

11. A large cohort of people with less common lung conditions were also not picked up by criteria such as that used by NHS Digital.[v] Weeks after shielding was announced we were hearing through our helplines from people with the extremely serious and terminal condition idiopathic pulmonary fibrosis (IPF), that they had not been contacted and GPs were unsure if they should be shielding or not. The British Thoracic Society was required to advise specialists to urgently contact these ‘missing patients’ by manually searching their patient lists. These included people with interstitial lung diseases like IPF, bronchiectasis, pulmonary hypertension, those on long term ventilation and those with severe asthma on biologic treatment.[vi]

Identification of people with respiratory conditions recommended to shield - gaps in respiratory data and disease registries

12. The identification of people who should be included on the shielding list was further exacerbated by poor respiratory registries and inconsistent central datasets. For example, the severe asthma registry is incomplete.

13. NHS England did a first search of centralised patient records, identifying around 900,000 people. NHS Digital then searched for people with asthma and COPD using medication records, but this did not identify everyone, as detailed in the previous section.

14. The algorithm used by NHS Digital was also deficient. As part of the criteria to identify people with severe asthma, it looked for those on four or more prescriptions for ‘continuous’ oral steroids (prednisolone), but it:
1. Did not look at hospital prescribing data where steroids can be prescribed
2. Used data from July – December 2019 therefore missing anyone receiving steroids from October 2019 onwards
3. Only looked at courses of steroids rather than the total dose.[vii] Someone on a daily dose of oral steroids but with fewer than four separate prescriptions in the six-month time period would have been missed by the algorithm.

15. The poor data on lung health held centrally significantly hampered the shielding process. NHSE admitted that central datasets were not sophisticated enough to identify those who should be on the shielding list, meaning GPs were asked to undertake time-consuming manual searches to find patients missed from the central data search. This request was then withdrawn, and a central search of GP records was made. This yielded another 417,000 people to the original list, but GPs were required to then search their own records again over the bank holiday weekend to find those not picked up by the algorithm.

16. There are vital lessons to be learnt from shielding in respiratory data, and urgent improvements to data collection and coding must be made. We are also concerned that the rollout of the expected risk prediction tool developed by DHSC to aid clinicians and patients in decisions about shielding has been delayed. The tool should be implemented as soon as possible, and should include a public-facing version, in order to facilitate joint decision-making between clinician and patient about individual risk from COVID-19 and choosing whether to shield. This is particularly important as we now understand more about risk factors such as age and co-morbidities, and how they interact. For example, it is likely that younger people with asthma who are otherwise healthy are at lower risk than previously thought. It is therefore important that we are only recommending people follow stringent guidance such as shielding where necessary.

Government communications on shielding

17. There were several issues in government communications with the shielded group. There were delays in receiving shielding letters, caused by difficulties in defining criteria and identifying respiratory patients. 45.2% of shielding respondents to an Asthma UK and British Lung Foundation survey said they had to wait two weeks or longer for confirmation of their shielding status, and 12% waited more than a month.[viii] This potentially put them at risk of exposure when COVID-19 transmission was high.

18. Some people never received shielding letters. 32.8% of shielding respondents to our May survey said they were shielding without a letter.[ix]

19. In May some people also received a text message from GOVUK stating that they are no longer on the shielding list, and therefore would no longer qualify for food parcels. Many believed these to be fake messages, but they were confirmed as official government communications. Clinicians had been asked to review their patient records to ensure only those needed to shield were on the shielded patient list, but the texts were sent before people had had a conversation with their clinician, causing unnecessary panic and confusion.[x]

20. There was also a noted lack of engagement with other stakeholders during the early stages of the pandemics, such as GPs and patient organisations. Government announcements were made without consultation or sufficient notice. Whilst in emergency mode, some decisions clearly had to be made quickly but the lack of stakeholder engagement meant health charities and clinicians were less able to support people by providing updated government messaging, for example on shielding. The change to shielding rules in England on 1 June to allow people to spend time outdoors was made with very limited prior notice, late on a weekend evening. When announced to the media, it surprised many people in the shielding group, who felt the rationale for the changes had not been explained, but also their GPs and some NHS leaders.

21. New guidance for clinically extremely vulnerable people was published on 4 November and advised people not to go to work, school or to the shops.[xi] This was announced less than 24 hours before lockdown began on 5 November, leaving almost no time for people with severe lung conditions to prepare and make arrangements for the next month. For example, there was very little time for people to have conversations with employers about working from home or other alternatives if this is not possible. Employers need adequate notice for changes to furlough guidance so that they can make use of these schemes and feel confident that they will remain in place for as long as needed.

22. There has also been confusion about the new guidance and whether it constitutes a return to shielding or not. The Government should do more to explain what the different is between shielding and the new CEV guidance, and why – for example, CEV people are now encouraged to exercise outdoors, due to the low risks associated with this, but many are not clear why this has changed .

Access to support services for people shielding

23. Government support for people shielding was set up quickly and, on the whole, ran fairly well. Those who received a shielding letter were mostly able to access food and medicine through the National Shielding Service, alongside support provided by local community networks and organisations. The NHS Volunteer Responders scheme now functions effectively. It will continue until at least December 2020, and it seems likely the service will be needed beyond this date.

24. Some people did find they had no alternative but to leave home for essential supplies, suggesting that not all shielders’ needs could be met to allow them to stay at home all the time. 23% in our survey said they had to leave home for essential food and medicine when deliveries were not available.[xii]

25. People who had to wait for a shielding letter, or who never received one and were therefore not on the shielded patient list, faced more barriers in accessing support. Without an official letter, people experienced problems in accessing support services, securing alternative working options from employers such as working from home, and accessing Statutory Sick Pay or Employment Support Allowance.

26. In September and October, we heard from a number of lung patients who were starting to shield again, or who had never stopped shielding since March. Until the new guidance for extremely clinically vulnerable was published on 4 November, these people were shielding with less support than was available during the first national lockdown and with no safety net to enable them to stay at home for weeks or months.[xiii] Government should ensure there is a support package for the clinically vulnerable which can be accessed anytime, in addition to the support provided during periods of official shielding, so that people can make decisions to protect themselves even when COVID-19 transmission is lower. This should include priority access to food deliveries, collection/delivery of medication, mental health support and help with getting online.

About Asthma UK and British Lung Foundation

27. Building on existing collaboration, in January 2020 Asthma UK and the British Lung Foundation merged to become the Asthma UK and British Lung Foundation Partnership. Together, we’re working to change the lives of everyone affected by a lung condition.

28. Throughout the pandemic, we have provided advice and support to some of the most vulnerable people.