I’ve been a hospital doctor for 10 years, but in February 2020 I switched to GP training. As part of that I’ve spent the last 18 months in hospital rotating around different specialities. In December 2020 I rotated onto a Department of Medicine for the Elderly (DME) ward, populated with very vulnerable patients.

The ward has five single side rooms, and six bays. There are mainly DME patients in the bays, but the side rooms are used by patients who need isolating for a variety of reasons. Originally built in 2005 as an ‘isolation ward’, it still retains that name. Throughout December and January during the UK’s second wave, the ward had a combination of Covid positive and negative bays and side rooms (as it had in the first wave).

Concerns about the ward air

As soon as I started work on the ward it was clear to me that patients and staff were getting infected from the ward air.

We had devastating numbers of hospital acquired infections in both patients and staff. I knew that my colleagues were doing everything asked of them with regards to droplet precautions and hand hygiene as I could see what was going on in front of me. I started to read the science around airborne transmission of Covid, and it fitted exactly with what I was witnessing.

UK PPE guidance wasn’t protecting staff

As per UK infection control prevention (IPC) guidelines, we didn’t have access to higher grade respirator masks (FFP3s) unless we were doing what is called an ‘AGP’ (aerosol generating procedure). This was rare, so most of the time we were all in surgical masks whilst providing close Covid patient care. I know I certainly felt very vulnerable in a surgical mask and petrified of taking Covid home to a loved one, so I’m sure most my colleagues felt the same.

Surgical masks are only designed to block large bits of virus droplets. However, Covid spreads primarily in smaller airborne particles called aerosols, which are expelled from an infected person’s nose and mouth (together with droplets) every time a person with Covid breathes, speaks or coughs. Unlike droplets, which drop to the floor within a few metres like the name suggests, aerosols are light and hang around in the air like invisible smoke in indoor spaces. Hence being outside is safer, as aerosols disperse quickly.

It was previously thought that AGPs were the only way aerosols were produced, but this science is very outdated now, and we know that humans simply breathing is aerosol generating! The laws of physics dictates that you can’t get droplets without aerosols too.

Aerosols cause Covid infection through inhalation. Loose fitting surgical masks will block a lot of aerosols, but some will also leak out, and in, around the poorly fitting edges. The closer you are to someone infected, the higher your chances of breathing in their exhaled aerosols. If that person is in a mask then your chances of getting infected by them is dramatically reduced, however very few patients when unwell in hospital with Covid can tolerate wearing masks. Staff caring for Covid patients have to get up close to unmasked Covid patients, putting them at high risk of inhaling short-range aerosols, which is why they should be in well fitted respirator (FFP3) masks which are designed to completely block aerosols.

A recent observational study from Addenbrooke’s Hospital showed that staff on Covid medical wards in surgical masks had up to a 47 x higher chance of being infected with Covid than their colleagues who were also wearing surgical masks on non-covid wards (who had the same rate as community infections). Following the change in protective equipment to FFP3s for all staff on the Covid wards, the incidence of infection on the two types of ward was similar. Their risk of being infected at work was effectively eliminated.

The risk to patients

Being in an indoor environment puts anyone sharing the same air as someone infected with Covid at risk of inhaling their long-range aerosols. I noticed very early on that even patients in our side rooms were tragically contracting Covid on the ward, despite staff following all the guidelines on preventing fomite (surface) and droplet transmission. This especially got me thinking about the flow and quality of the air on the ward.

Were the long-range aerosols drifting into the non-Covid bays and side rooms?

Also, were unknowingly infected staff taking Covid in and breathing Covid aerosols out of the sides of their poorly fitting masks?

I felt like it was probably a combination of the above, mainly the first as genomic sequencing studies show that patients are mostly infected by other patients.

We were only being PCR tested once weekly, plenty of time to sadly infect a colleague or a patient before you knew you were infected. There is little chance to distance from colleagues or patients on the ward. When staff are spending 12 hour shifts in wards with covid patients and working together in close proximity with colleagues in a high-risk environment, they need the best masks available.

We felt very helpless to protect our patients on the ward. Despite the best efforts of everyone on the fantastic team I was proud of be working with, we were having heart-breaking regular hospital outbreaks together with an alarming number of staff infections. The worst phone calls I’ve had to make in my career were the calls to the relatives, letting them know that their loved one had tested positive for Covid, often likely nosocomial (originating from the hospital). I felt like I was letting my patients and their family’s down, and it went against ‘first, do no harm’.

I also wanted to speak up to defend my colleagues. It was clear to me that Covid wasn’t spreading on the ward as staff don’t wash their hands, or were wearing masks under chins, as some asserted without evidence. We were working through the most traumatic and challenging time of our careers, and I was not going to accept my hardworking, selfless colleagues being laden with unfair guilt. Individual behaviour may have played a small role at times, but it was not the cause of the huge issue of nosocomial Covid infections that we saw nationally in the UK this pandemic.

Auditing the air and ventilation

Wanting to help the situation, I spent hours reading on the topic of airborne transmission and reached out to experts in the field to learn more. I bought my own C02 and particle counter to audit the air quality on the ward, which showed it was indeed poor. I went around the ward looking for any ventilation extracts/inflows. I also spoke to our hospital estates about the ventilation and filtration on the ward (ventilation provides fresh air – it can be natural or mechanical, and filtration means air filters to clean the air. Air can also be cleaned using UV technology.

It transpired that there was no mechanical ventilation or filtration on the ward, we were relying solely on natural ventilation (i.e. opening windows), which was very difficult to do in winter months and with safety latches on the windows limiting opening. Nobody knew the direction of air flow on the ward, particularly into or out of the side rooms.

Raising concerns with my CEO

I emailed our hospital’s CEO about my concerns regarding inadequate PPE and lack of attention to airborne spread within the hospital. He was fantastic and got back to me very promptly to kindly acknowledge my concerns. We had a meeting several weeks later, together with my ward manager, matron, and ward consultants. The head of infection control was invited, and I had emailed my concerns to the infection control team separately. I made it clear that I was by no means an expert on this topic (the experts are the engineers, aerosols scientists, and architects with a specialist interest in this area – we need to listen to them on this and work together to tackle it), but I simply wanted to raise the issue that the air we breathe in healthcare settings is incredibly important to reduce airborne disease transmission.

Changes were implemented to improve safety

In the second half of January 2021, my trust changed their own local PPE guidance to allow FFP3s for all staff caring for covid patients, if their manager felt the local risk assessment warranted this. National guidance still said surgical masks alone were adequate, but many trusts had begun to cotton on to the vast numbers of staff sickness on covid wards which were following national DHSC/PHE guidance. I am very pleased to say that since this time any staff member who has needed an FFP3 mask has had access to one.

After the meeting to discuss ventilation and air cleaning, our CEO organised a trust ventilation audit to ensure the hospital meets the ventilation standards set out by NHS England. Obviously, it takes time to update inbuilt ventilation systems, so in the meantime any areas with poor ventilation have portable air cleaning (HEPA filters). This includes this ward that I worked on, which once again has Covid admissions. There are also window stickers on the ward that the ward manager and I stuck up, to remind staff of the importance of fresh air, and all staff always have access to FFP3 masks regardless of AGPs.

My CEO thanked me for bringing this important issue to his attention and commented how difficult it was for them with the lack of national guidance for hospital trusts (and social care settings) on how to mitigate against airborne spread of Covid. You can see his comments at the bottom of this blog. 

UK guidance remains unsafe

There has been plenty of guidance for trusts on how to clean surfaces, but no guidance on the most important mitigation measure of all – how to clean the shared air. DHSC/PHE PPE guidelines saying surgical masks were adequate for Covid patient care in the absence of AGPs also put trusts in difficult positions.

National PPE guidance is still woefully inadequate. Their latest update in June 2021 leaves trusts to decide where FFP3 masks are required for staff, after saying for well over 12 months that they were only required in the presence of AGPs. In my opinion, they needed to come out and clearly say this was an error, and that all health and social care workers caring for Covid patients need access to FFP3 masks. Ideally re-usable ones, better for the environment, and often more comfortable for the wearer.

If you have concerns locally…

If you have safety concerns, speak to your colleagues. People were incredibly supportive of me speaking out. It was a team effort to make our ward a safer place for patients and staff.  

I am also very grateful to our trust’s CEO, for being an inspirational leader and taking the time to listen to, and act upon, my ‘Concerns from a junior doctor’ emails. I will always be indebted to him.

Even if you do not have support, I would encourage anyone to speak out for what you believe is right, especially if the health of your patients is at risk. Being silent is being complicit. Ask, would you want a relative of yours being admitted to that ward and treated in that way? If the answer is no, you know what to do.

Lindsay Fraser-Moodie

Comment from David Carter, Chief Executive, Bedfordshire Hospitals NHS Foundation Trust:

“When Dr Fraser-Moodie first contacted me, it was 12th January 2021. This period was probably the most difficult and challenging time for us during the whole COVID period, as like other hospitals, we were trying to manage the rising  numbers of admissions and the risk of nosocomial infection which was becoming part of the national picture.  Indeed that week has proven to be the week with the highest number of positive inpatients at the Trust during the whole pandemic. We relied heavily on the national guidance to drive our local policies recognising that whatever reservations we may have, compliance with that guidance was the safest position for us to take and indeed in relation to PPE in the early waves, the difficulty in the supply chain meant that hospitals had little choice.

Dr Fraser-Moodie’s email to me challenged that guidance specifically in relation to the transmission risks and did so in a well - researched and informed way but also in a very personal way, bringing home the impact the pandemic was having on both staff and patients.   It also chimed with the concerns we, and other members of staff, were starting to have regarding the way that the new Kent strain of the virus appeared to be spreading. Throughout the pandemic we have been fortunate to have been able to call on the wise counsel of our DIPC and microbiologist, Dr Mulla who himself was concerned about the difficulty in providing adequate ventilation, particularly on wards in winter when opening windows was very difficult.  Myself and Dr Mulla took some time to talk to the ward about their concerns and also to explain some of the constraints we operate under, including our need to adhere to national guidance wherever we can. Nonetheless as a result of Dr Fraser-Moodie’s highlighting of these issues, we made some changes to our approach including a modification to our PPE policy which allowed for more local risk assessment, an increase in our purchase of portable air filtration units and the acceleration of our site-wide ventilation audit which is now guiding the infrastructure works on the site.

I strongly believe that when individuals raise concerns, we have a duty to listen and only by creating a culture when individuals feel safe to do so can we learn and change and ultimately provide the care we aspire to. However those who raise concerns also have a duty to do so in the right way. In the midst of a pandemic it was incredibly important to not cause alarm amongst patients, not to damage the morale and reputation of the services being delivered and to recognise some of the practical difficulties inherent in managing the situation in an ageing NHS estate. Dr Fraser-Moodie found that balance and I would like to thank her for having the bravery to raise a concern but also doing so in a respectful, evidence driven way which made it much easier for me to engage in a non-defensive way.  I am sure that Dr Fraser-Moodie will continue to be a positive force for change as she continues her career.” 

David Carter

Related content

PPE guidance continues to put staff and patients at risk, by Dr David Tomlinson

New FFP3 respirators may cut infection risk

Hospital-acquired infection caused one-in-five covid deaths at several trusts

The scandal of insufficient PPE: Why healthcare workers were betrayed – and continue to be

How will NHS staff with Long Covid be supported?

 In addition to the authors, this letter to The Lancet has been signed by over 120 scientists and Patient Safety Learning’s Chief Executive Helen Hughes.

Frontline healthcare staff have undoubtedly been disproportionately affected by Covid-19 infections.[4][5][6] Issues with PPE supplies at the start of pandemic and a failure to respond to the virus as airborne, meant that many were working without adequate protection. This left thousands of staff and patients vulnerable to hospital acquired infections, and increased the risk of the virus being transmitted to loved ones at home.[7][8]

It is essential now that all measures are taken to prevent further avoidable harm. In this article, I talk about the dangerous holes that remain in current PPE guidance;[9][10] drawing on evidence and personal experience to explain why we need urgent action.

General ward staff most vulnerable

Denied access to enhanced PPE

The potential for this virus to be airborne was highlighted by experts[11] right at the start of the pandemic, and through preprint research papers.[12]

Despite these early findings, in March 2020 UK PPE guidance for Covid-19 facing healthcare workers was downgraded.[13] It went from requiring airborne protection for all, to reserving airborne PPE only for those undertaking aerosol generating procedures which are mainly performed in an Intensive Care Unit (ICU).

This left healthcare workers on general Covid wards without airborne PPE, at unnecessarily greater risk. That same Public Health England guidance remains in place today.

Treating patients at their most contagious

Significantly, data on Covid-19 patients also demonstrate that peak infectious viral loads occur around the time of initial symptom onset.[14] This is also the point at which people with Covid-19 were most likely to be first admitted to hospital (typically day 4 following symptom onset).

This means that patients were actually more infectious when being treated by staff working on a general ward, than when they were transferred, if necessary, to ICU (typically day 8).

Working in poorer ventilated spaces

To add another increased risk factor, minimum standards of hospital ventilation[15] for ICU are far superior to those for general wards. Staff working on general wards may only benefit from three air changes per hour compared to 10 in ICUs (unless they supplement manually, with open windows for example).

Coughing – a greater risk than intubation

In October last year, investigators from Bristol[16] demonstrated that voluntary coughing was a far greater aerosol generating process than either intubation or extubation (both of which remain at the top of the list of aerosol generating procedures; warranting enhanced PPE).[17]

The combination of factors highlighted above creates a ‘perfect storm’ for greater infection risk amongst non-ICU healthcare workers.[18]

Raising safety concerns: a wild goose chase

In October 2020, a third UK-based report was published demonstrating significantly greater risk of Covid-19 infection and/or death in non-ICU UK patient-facing staff.[19] Surely someone would listen now?

I emailed Public Health England South West, requesting the urgent provision of FFP3 respirators, or equivalent, to all UK healthcare workers in Covid-19 facing roles. I have yet to receive a reply.

While waiting, I emailed [Appendix A] Professor Peter Horby, NERVTAG Chair who advised I try the Department of Health and Social Care or Public Health England.

So, I emailed the Department.

They replied in December to say that I should try Public Health England, giving me a different email address.

So, I emailed Public Health England.

Before Christmas, my email was also sent to two MPs, who forwarded it to Sir Simon Stevens and Matt Hancock’s Special Advisor.

In January, Public Health England replied to say that I should contact NHS England.

So, I did.

They replied on 7 May advising, ‘you should wait for a response from your MP.’

The British Medical Association and Royal College of Nursing also wrote to Public Health England requesting enhanced PPE for all Covid-19 facing healthcare workers. It was denied.

Fresh Air NHS wrote to the Prime Minister, requesting better ventilation and airborne PPE for all UK healthcare workers. The letter was signed by around 1,600 professionals. There has been no response.

We were all raising serious safety concerns, but it felt like we were screaming into a vacuum. No one was listening. No one was taking responsibility.

Refusal to change the guidance

Finally, on 17 May 2021, I received this reply, via an MP:

‘The UK-wide IPC Cell, a team within NHSE that looks at the updating of the IPC guidance, recently reviewed evidence in relation to the transmission route of COVID-19 and the IPC precautions required, and agreed that no changes to the current PPE requirements were needed.’ (Appendix B)

I was appalled. Not only have approximately 1,000[20] UK healthcare workers died from Covid-19, with significantly greater risk in those working on general wards, but in December 2020, the World Health Organisation (WHO) had stated that airborne respirators:

‘…may be used by health workers when providing care to COVID-19 patients in other settings if they are widely available and if costs is not an issue.’ [21]

More recently, WHO strengthened its wording on aerosol transmission, stating:

‘A person can be infected when aerosols or droplets containing the virus are inhaled or come directly into contact with the eyes, nose, or mouth.’[22]

The airborne nature of the Covid-19 virus is now recognised by experts around the world,[23][24][25][26][27] yet in the UK we continue to be led by PPE guidance that is failing to respond to the threat this presents.

Consequences of inaction: A PPE postcode lottery

The consequences of continued inaction are clear. With novel variants demonstrating greater transmissibility and possible vaccine escape, non-ICU staff who are denied airborne PPE will continue to suffer disproportionately greater rates of infection, Long Covid and/or death.

Furthermore, with airborne PPE a legal requirement according to workplace safety legislation,[28] employers following Public Health England guidance risk substantial financial exposure. These issues have been recognised by 17[29] ‘exemplar’ NHS organisations, who mandate FFP3 respirator use for all Covid-19 patient care – not just ICU staff.

This PPE ‘postcode lottery’ will continue for as long as Public Health England, NHS England, IP Cell, the 4 nation Chief Medical Officers, or whoever has responsibility for PPE guidance, continue to remain anchored on a scientifically invalid model of respiratory virus transmission (ie via large droplets).

Questions need to be answered

In his recent evidence to the Coronavirus Lessons Learned, Science and Technology Committee, the Prime Minister’s former Special Advisor Mr Dominic Cummings stated:

“Even now—even today—the Government communications are still over-stressing ‘Wash your hands’ and under-stressing airborne.”[30]

This leads us on to a number of important questions that need to be answered:

• Why is the extensive literature indicating the importance of the aerosol / airborne route of transmission, still being ignored? 
• Why are the safety requests of concerned NHS employees and pleas of their union representatives being denied?
• Why was the PPE guidance downgraded, advising basic surgical mask use amongst non-ICU teams, considering the virus was originally designated an ‘airborne high consequence infectious disease’,[31] requiring airborne PPE for all known or suspected Covid-19 patient contacts?
• Healthcare and medico-political leaders are aware of the increased risk to non-ICU, patient-facing healthcare workers, so why haven’t they changed the guidance to provide better protection?

Final thoughts and call to action

Denying the objective nature of reality never ends well. Such a persistent denial of the airborne nature of Covid-19 transmission indicates a gross and negligent failure of medico-political leadership. The safety of staff and patients is being gambled as a consequence.  

There needs to be an urgent review of the PPE guidance to ensure that it is lawful, evidence-based, reflective of the airborne nature of the Covid-19 virus, and that safety is prioritised. Providing enhanced PPE to everyone working in non-ICU Covid-19 wards, would offer some much-needed reassurance that our leaders are committed to protecting both patients and staff from avoidable infection and the associated consequences.

Suggested reading

• Benefits of & reusable P3 respirators for UK  COVID-19 PPE inequalities (a presentation by Dr Gillian Higgins)
• Why is staff safety a patient safety issue?
• We all want a culture of speaking up, don’t we? So, why isn’t it happening?
• How will NHS staff with Long Covid be supported?

Appendices

Appendix A – Email raising concerns

Dear …….,

At the 48^th meeting of SAGE, 23^rd July, you were part of a group which endorsed the EMG paper on aerosol transmission [of SARS-CoV-2] including this statement (p.6):“Well-fitting respiratory protective equipment which meets the standards for FFPs or FFP2 are shown to be effective at stopping small aerosols. However these are only considered to be appropriate where there is a significant risk of aerosol transmission, for example during aerosol generating procedures in a healthcare or dental setting.” 

Following the release of a third report demonstrating significantly greater risk of SARS-CoV-2 infection and/or death in non-ICU UK patient-facing staff, I am writing to request your urgent review of the current PHE (UK) infection prevention and control (IP&C) PPE policy for all “front line” health and social care staff. 

As you are probably aware, last week’s BMJ (https://doi.org/10.1136/bmj.m3582) included the third such report, describing how: "patient facing healthcare workers (HCWs, n=158,445) compared with non-patient facing HCWs, were at higher risk [of SARS-CoV-2 infection] (HR 3.30, 2.13-5.13)...after sub-division of patient facing HCWs into…front door, ICU, non-ICU aerosol generating settings and other, those in front door roles were at higher risk (HR 2.09, 1.49-2.94).”  

The second report was released as a medRxiv preprint in June 2020 (https://doi.org/10.1101/2020.06.24.20135038, n=9,809 HCWs), in which an Oxford research team demonstrated: “Risk of Covid-19 infection varied by specialty, even accounting for working in a Covid-19 facing area. Those working in acute medicine were at increased risk, (aOR 1.5, 95% CI 1.05 – 2.15, p=0.03), while ICUs were at lower risk (0.46, 0.29 – 0.72, p=0.001).”  

Finally, a report into 106 HCW deaths from Covid-19 dating to 22nd April 2020, described how none of the deceased medical or nursing staff were anaesthetists, intensivists, or worked on intensive care (https://www.hsj.co.uk/exclusive-deaths-of-nhs-staff-from-covid-19-analysed/7027471.article#.X6sZAWaIZ28.twitter). 

These findings can be understood when considering that presently, front-door (non-ICU) HCWs involved with Covid-19 patient care are in a “perfect storm” of greater infection risk, yet with sub-optimal PPE: 

Front door (non-ICU) HCWs are exposed to patients at a time of greatest Covid-19-associated viral load. 

o  The median duration of infectious viral shedding in hospitalised patients with Covid-19 is 8 days (IQR 5-11, https://doi.org/10.1101/2020.06.08.20125310), with peak infectious viral load from 1-2 days before the onset of symptoms (https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/933225/S0824_SARS-CoV-2_Transmission_routes_and_environments.pdf).

o  The median time from onset of symptoms of Covid-19 in the community to presentation at hospital is 4 days (IQR 1-8)" (ISARIC A4, n=20,133https://doi.org/10.1136/bmj.m1985). 

o  The median time from symptom onset to severe hypoxaemia and ICU admission is approximately 7–12 days (https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(20)30161-2/fulltext#seccestitle30). 

o  The typical front door HCW working environments (i.e. non-isolation wards) are subject to lower standards of ventilation compared to the ICU: 6 air changes per hour (AC/hr) is permitted on general wards, half of which may be passive (i.e. requiring windows to be open and subject to important external environmental fluctuations), compared to 10 AC/hr on ICU, all of which must be mechanical (https://www.gov.uk/government/publications/guidance-on-specialised-ventilation-for-healthcare-premises-parts-a-and-b). 

o  Airborne transmission of SARS-CoV-2 is now acknowledged by WHO, CDC, ECDC, SAGE (UK) and PHE (UK), and speaking is recognised to be an important aerosol-generating activity (https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/910885/COVID-19_Infection_prevention_and_control_guidance_FINAL_PDF_20082020.pdf). 

o  Front door (non-ICU) HCWs have a lower “requirement” for PPE, since only ICU staff are routinely permitted to wear FFP3-equivalent respirators offering suitable protection against aerosol transmission, according to current PHE (UK) IP&C guidelines (https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/910885/COVID-19_Infection_prevention_and_control_guidance_FINAL_PDF_20082020.pdf).  

Moreover, providing novel insights into the present designation of intubation and/or extubation as high-risk aerosol generating procedures through “real-time, high-resolution environmental monitoring”, investigators from Bristol in a manuscript accepted 2^nd October 2020 (https://associationofanaesthetists-publications.onlinelibrary.wiley.com/doi/pdf/10.1111/anae.15292) concluded: 

“The study does not support the designation of elective tracheal intubation as an aerosol generating procedure. Extubation generates more detectable aerosol than intubation but falls below the current criterion for designation as a high-risk aerosol-generating procedure.” This was based on the finding: “Using the quantity and concentration of aerosolised particles generated by volitional coughs as a reference, we have shown that both intubation and extubation sequences produce less aerosol than voluntary coughing.” 

While it is technically impossible to re-engineer ventilation systems within all healthcare premises to achieve ICU-levels of safety, the provision of FFP3 (or equivalent) respirators to all UK HCWs in Covid-19 facing roles could be readily achieved at the necessary scale and pace to help reduce the risk of HCW-associated SARS-CoV-2 infection.  

As a GMC registered clinician with a responsibility to protect the health of the public, my concern over this public health issue is genuine. I hope you are able to give this matter your urgent attention, please. 

Many thanks. 

Yours sincerely 

David R. Tomlinson BM BSc MD MRCP 

Appendix B – response received via an MP

References

[1] Shukman D, 2021. Covid-19: Health staff in plea for better protection. BBC, accessed 7/06/21.

[2] Kings College London News Centre, 2020. First UK estimate of the number of COVID-19 patients infected, whilst in hospital. Accessed 7/06/21.

[3] GOV.UK, 2021. Dynamic CO-CIN report to SAGE and NERVTAG, 5 May (page 5). Accessed 7/06/21.

[4] Eyre D, Lumley S, O’Donnell D et al. Differential occupational risks to healthcare workers from SARS-CoV-2: A prospective observational study (preprint) MedRxiv 2020.  

[5] Shah A S V, Wood R, Gribben C, Caldwell D, Bishop J, Weir A et al. Risk of hospital admission with coronavirus disease 2019 in healthcare workers and their households: nationwide linkage cohort study. BMJ 2020; 371 :m3582.

[6] Cook T, Kursumovic E, Lennane S. Exclusive: deaths of NHS staff from covid-19 analysed. HSJ 2020.

[7] Shah A S V, Wood R, Gribben C, Caldwell D, Bishop J, Weir A et al. Risk of hospital admission with coronavirus disease 2019 in healthcare workers and their households: nationwide linkage cohort study BMJ 2020; 371 :m3582.

[8] Karlsson U, Fraenkel C. Covid-19: risks to healthcare workers and their families BMJ 2020; 371 :m3944.  

[9] Public Health England, 2021. COVID-19: Guidance for maintaining services within health and care settings Infection prevention and control recommendations. Accessed 7/06/21.

[10] Lintern S, 2021. Infection rules for NHS staff leave them at risk from airborne Covid, warn experts. Independent. Accessed 7/06/21.

[11] Gale J, 2021. Covid Is Airborne, Scientists Say. Now Authorities Think So, Too. Bloomberg. Accessed 07/06/21.  

[12] Santarpia J, Rivera D, Herrera V et al. Transmission Potential of SARS-CoV-2 in Viral Shedding Observed at the University of Nebraska Medical Center (preprint). MedRxiv 2020.  

[13] New and Emerging Respiratory Virus Threats Advisory Group, 2020. Minutes of the NERVTAG COVID-19 Ninth Meeting: 13 March 2020. Accessed 7/06/21.

[14] The Scientific Advisory Group for Emergencies, 2020. SARS-COV-2 TRANSMISSION ROUTES AND ENVIRONMENTS SAGE – 22 OCTOBER 2020. Accessed 7/06/21.

[15] Department of Health and Social Care, 2007. Heating and ventilation of health sector buildings (HTM 03-01). Accessed 7/06/21.

[16] Brown J, Gregson F, Shrimpton A et al. A quantitative evaluation of aerosol generation during tracheal intubation and extubation. Anaesthesia 2021;76:174–181.

[17] Public Health England, 2021. COVID-19 infection prevention and control guidance: aerosol generating procedures – procedures that create a higher risk of respiratory infection transmission. Accessed 7/06/21.

[18] Eyre D, Lumley S, O’Donnell D et al. Differential occupational risks to healthcare workers from SARS-CoV-2: A prospective observational study (preprint) MedRxiv 2020.  

[19] Shah A S V, Wood R, Gribben C, Caldwell D, Bishop J, Weir A et al. Risk of hospital admission with coronavirus disease 2019 in healthcare workers and their households: nationwide linkage cohort study BMJ 2020; 371 :m3582.

[20] Shukman D, 2021. Covid-19: Health staff in plea for better protection. BBC, accessed 7/06/21.

[21] World Health Organization, 2020‎. Mask use in the context of COVID-19: interim guidance, 1 December 2020. Accessed 7/06/21.

[22] World Health Organization, 2020. Coronavirus disease (COVID-19): How is it transmitted? Accessed 7/06/21.

[23] Gale J, 2021. Covid Is Airborne, Scientists Say. Now Authorities Think So, Too. Bloomberg. Accessed 07/06/21.

[24] Mahase E. Covid-19: Wider use of FFP3 masks may be needed because of airborne transmission, say scientific advisers BMJ 2021; 373 :1089.

[25] Rabin R and Anthes E, 2021. The virus is an airborne threat, the C.D.C. acknowledges. New York Times. Accessed 7/06/21.  

[26] Morawska L and Milton D. It Is Time to Address Airborne Transmission of Coronavirus Disease 2019 (COVID-19). Clinical Infectious Diseases;71(9);2311–2313.

[27] Greenhalgh T, Limenez J, Prather K et al. Ten scientific reasons in support of airborne transmission of SARS-CoV-2. Lancet 2021;397(10285):P1603-1605.

[28] HSE, 1974. Health and Safety at Work etc Act 1974.

[29] Shukman D, 2021. Covid-19: Health staff in plea for better protection. BBC. Accessed 7/06/21.

[30] UK Parliament transcript, 2021. Formal meeting (oral evidence session): Coronavirus: lessons learnt. Accessed 7/06/21.

[31] UK Advisory Committee on Dangerous Pathogens, January 2020.

“Access to health information to help people make informed choices about their health and wellbeing is vital. More so when an illness becomes long term and stops people living their normal life. When trusted information is missing, misinformation and disinformation can fill the gap and cause real harm. People with long Covid should not be left to Dr Google, particularly when we know Covid has hit disadvantaged communities hardest.…”

Sophie Randall, Director at Patient Information Forum

Symptoms of Long Covid

Patients with Long Covid report wide-ranging symptoms affecting all body systems. Many also experience serious relapses and changing symptoms several months after their initial infection.

Despite this, there is still very little awareness or proactive messaging around the range of symptoms related to Long Covid. This can lead to:

1. clinicians misdiagnosing or dismissing patients with Long Covid symptom patterns [3] [4]
2. patients not recognising that health problems they are experiencing could mean they have Long Covid
3. patients not being supported to adequately ‘pace’ to avoid relapses
4. the general public being unaware of the long-term health risks of contracting Covid-19, which may impact their ability to make informed decisions about their behaviour and the degree of risk associated with this.

What information is needed?  

• A list of the most common symptoms of Long Covid in both adults and children needs to be widely and publicly communicated so that patients and clinicians can recognise when specific support is needed and access the appropriate care.
• A Public Health England campaign designed to inform people of the symptoms of Long Covid, accessible to everyone (eg different translations, Easy Read, hardcopy, user friendly, culturally appropriate) and in line with best practice patient information standards. [5] Tailored messaging should be developed to target communities most affected by Covid-19.

Long Covid assessment centres

Last year, the Government announced the opening of 69 Long Covid Assessment Centres throughout England. However, there are concerns that the promises of support made have not materialised and that many Long Covid patients are struggling to access referrals, clinical investigations and treatments[6] or are facing long waiting times.[7]  

Patients have told us how difficult it has been finding out where their nearest centre is, what services are provided and how to be referred.[8] Many have raised concerns that multidisciplinary clinical teams are not available, as originally implied, [9] which has led to delays in investigations and treatment. Some centres are focusing largely on talking therapies.[10]

The latest NHS guidance, states that 'Post‑COVID‑19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed'.[11] However, some patients are still being told they are unable to be referred before 12 weeks, highlighting a clear disparity in some areas between the guidance and patients’ experience of the implementation of this in practice.

In the absence of clear information, patients have been left ‘joining the dots’. Thousands have turned to online forums, [12] collectively trying to figure out how, where and if they can get the support they need.

What information is needed?  

• A publicly available list of the assessment centres that are active in England, and equivalent services in Northern Ireland, Scotland and Wales.  This should include information on the exact locations, capacity, services offered and referral processes relevant for each, and should also outline the Long Covid services available for children. This would enable patients and healthcare staff to have a clear, consistent understanding of what is available locally which would improve access. This information would also provide transparency around service provision so that geographic disparities can be identified and addressed.
• Timely and regular information to help GPs and other healthcare staff understand how to implement guidance and any updates as they are released.

Education and awareness

There is a widespread lack of awareness of the debilitating and relapsing nature of Long Covid. Public messaging also contains little information on Long Covid’s presence among all age groups, including young children. ONS data suggest that 13% of under 11s and about 15% of 12- to 16-year-olds reported at least one symptom five weeks after a confirmed Covid-19 infection.[13]

While children are not part of the vaccination programme, it is especially important that the public are offered the information needed to make informed choices around precautionary measures. 

Lack of education and awareness has meant many people continue to face disbelief and poor support from healthcare professionals, employers, schools, friends and family; hindering their recovery and access to services. This can also understandably have a devastating impact on a person’s self esteem and wellbeing.

“My Dr didn't believe I'd had Covid, ignores my symptoms. I have dealt with it all on my own. I feel I have aged 20yrs in a year. My optician told me I have Long Covid because of deterioration in my eyes, my orthopaedic consultant also said I was suffering from it. I now suffer from wheezing & sob (shortness of breath) which I've never had before.”

Patient feedback submitted to the Long Covid Support Survey. 

What information is needed?

• Proactive, public messaging around the prevalence and nature of Long Covid, with targeted messaging aimed at the communities most affected by Covid-19.
• Clear, evidence-based training (co-designed with people with lived-experience) to be mandatory for anyone working with people living with Long Covid.
• Information for employers and education providers to help guide them in how to safely and fairly support people living with Long Covid.
• Feedback to be routinely collected from patients who have persisting symptoms of Covid-19; used to inform practise and identify further training needs among staff.
• Patient-facing information that is evidence based and user friendly, should be developed to empower people to ask for support, and understand what they can expect from their GP if they have Long Covid symptoms.

Performance and effectiveness

Although there are plans to collect some data on the assessment centres, there is currently nothing available on the performance or effectiveness of Long Covid services.[14] This lack of information not only creates a barrier to quality improvement and monitoring, but also has implications for resource management and transparent reporting.

Without this data, it is impossible to understand the current scale of the challenge to frontline services, to learn rapidly from examples of excellence or to identify areas where improvements are needed to keep patients safe.

What information is needed?

Data need to be made publicly available on the performance of the Long Covid assessment centres, including:

• the capacity of each centre
• number of people referred, seen or are on a waiting list for the assessment centre (and when are they likely to be seen)
• number of face-to-face compared with virtual appointments.
• number of people referred, seen or are on a waiting list for diagnostic tests (and when are they likely to be seen)
• number of people referred, seen or on a waiting list for treatment (and when are they likely to be seen)
• patient feedback on the services provided.

Conclusion

Many people living with Long Covid have been unwell for more than a year, unable to work or to experience life as they previously had. They want to access the right clinical expertise, to understand their symptoms and to be supported to recover as fully as possible. But confusing, absent or inaccessible health information continues to create barriers for them.

The gaps highlighted in this blog, must be addressed to ensure public transparency and to help all patients with Long Covid access safe quality care.

Join the conversation

Are you living with Long Covid? Or perhaps you’re a healthcare professional supporting those who are struggling to recover?

Your perspectives are integral to developing this conversation, so please do share your insights by commenting below. You’ll need to sign up to the hub first, our global patient safety platform (its free and easy to do).

We want to know:

• What did you think of the points raised in this blog?
• What is your experience of accessing or delivering Long Covid services?
• What’s working well?
• What are the main challenges and barriers?
• What more needs to happen to support healthcare professionals and patients?

You can also join the chat about this topic in our community forum here.

Follow us on twitter @ptsafetylearn and retweet this blog to #share4safety using the icon at the bottom of this page.

Related reading:

• How will NHS staff with Long Covid be supported?
• Long Covid Minister needed to respond to growing crisis
• Promises of Long Covid support have not materialised (a blog by Clare Rayner)

References

[1] Office for National Statistics, 2021. Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 1 April 2021. Accessed 7/06/21.  c

[2] Campbell D, 2021. Strain on NHS as tens of thousands of staff suffer long Covid. the Guardian. Accessed 7/06/21.

[3] Patient Safety Learning, 2020. Dismissed, unsupported and misdiagnosed: Interview with a COVID-19 ‘long-hauler’. Patient Safety Learning’s the hub. Accessed 7/06/21.  

[4] Thomas H, 2021. Long Covid patients 'told to go away by GPs'. BBC Wales. Accessed 7/06/21.

[5] Patient Information Forum, 2021. About the PIF TICK. Accessed 7/06/21.

[6] Long Covid Support, 2021. Long Covid clinic survey - March analysis. Accessed 7/06/21.

[7] Sample I, 2021. Some long Covid sufferers in England waiting months for treatment. Guardian. Accessed 7/06/21.

[8] Patient Safety Learning, 2020-21. Long Covid: Where are these clinics? Patient Safety Learning’s the hub forum.

[9] NHS England, 2020. NHS to offer ‘long covid’ sufferers help at specialist centres. NHS England News. Accessed 7/06/21.

[10] Wright S, 2021. Twitter thread. Twitter. Accessed 7/06/21.

[11] NHS England, 2021. National guidance for post-COVID syndrome assessment clinics (updated April 2021). Accessed 7/06/21.

[12] Long Covid Support group forum. Facebook. Accessed 7/06/21.  

[13] Grover N, 2021. Data on long Covid in UK children is cause for concern, scientists say. Guardian. Accessed 7/06/21.

[14] NHS Digital, 2021. COVID-19 Long COVID Assessment Clinic Activity SitRep. COVID-19 Situation Reports. Accessed 7/06/21.

Can you tell us a bit about yourself and your experience of Long Covid?

I’m a Respiratory Consultant and caught Covid-19 back in November 2020, during the second wave in the UK. Since my initial infection I have suffered from persistent symptoms including palpitations, distressing skin rashes, disabling fatigue, cognitive issues and urinary incontinence. I have not yet been able to return to work.

Do you believe you caught the virus while at work?

Yes, without a doubt. I was working with infected patients and, like many frontline colleagues, became ill myself.

We didn’t have access to full PPE like Hazmat suits, and many didn’t even have FFP3 masks. Studies show this would have made a huge difference to transmission rates and to the safety of healthcare workers.[1] [2]

Although the lack of access to the right supplies was slightly more understandable at the start of the pandemic, several months later when I caught Covid the handling of the situation was still not up to scratch. It’s inexcusable and has heartbreakingly cost many lives and also resulted in significant illness and disability.

How is Long Covid impacting NHS staff?

We know from ONS data at least 122,000 health service workers are suffering with Long Covid.[3] Not only does this have huge implications for their personal health and future, but it puts further strain on already understaffed NHS.

Some staff are being well supported through their recovery, but others are being pressured to return to their usual work duties too soon, with little consideration for the relapsing nature of this condition.

What are the safety concerns if people return too soon?

There are worries for the safety of the individual, the wider team and for patients.

We know that people with Long Covid need to pace themselves to reduce the chance of having a relapse or developing new symptoms. I personally don’t feel safe returning to my previous duties until I am certain there is no risk of me collapsing in a heap on the job. This would be detrimental to my own recovery, to the care of my patients and would put additional stress onto colleagues.

We also know that many people with Long Covid suffer from neurological difficulties, also known as ‘brain fog’. Resuming duties and taking on high or complex caseloads when you feel like this, could lead to unsafe patient care. 

How can staff be better supported to return to work?

Hundreds of thousands of healthcare staff contracted the virus while working to protect others. We worked on the frontline without adequate protection, not knowing the full extent of damage this virus can cause. Devastatingly, many frontline workers have died as a result.

Those who survived but have been left debilitated by Long Covid, need help and understanding. A typical 4-week phased return isn’t going to be appropriate for a condition of this nature. Recovery is not linear and there needs to be flexibility and awareness.

Reasonable adjustments will also need to be considered, possibly long term, to enable individuals to continue to contribute in ways that are feasible. For example, I might be able to support student training through virtual sessions, but I may not be physically able to do a ward round.

Currently, NHS workers with Long Covid in England are entitled to full pay for a year. No one seems to know what the plan is after. This absence of information, coupled with financial worries will no doubt see people forced to return before they are well enough.

It’s hugely concerning for individuals and their families; much more needs to be done to forward plan and offer reassurance. This needs to come from the top.

Final thoughts?

Clearly our health service is facing unprecedented challenges, but Long Covid isn’t going to magically disappear. Cases are likely to rise and without due consideration, staff with Long Covid are likely to be left feeling abandoned and unsupported.

Surely, they deserve better?

Asad Khan

Related content:

• Long Covid Minister needed to respond to growing crisis
• My experience of suspected 'Long COVID' (By Dr Jake Suett)
• Post COVID-19 syndrome: What support can patients expect from their GP?

References

[1] Liu M, Cheng S, Xu K, Yang Y, Zhu Q, Zhang H et al. Use of personal protective equipment against coronavirus disease 2019 by healthcare professionals in Wuhan, China: cross sectional study BMJ 2020; 369 :m2195

[2] Butler M, Inkster T, Foster C, et al. Effect of Implementation of Aerosol Respiratory Protective Equipment, Vaccination and Natural Infection on a Covid-19 Cohort Ward: A Retrospective Observational Cohort Study. OSF Preprints, 13 May 2021.  

[3] Denis Campbell. Strain on NHS as tens of thousands of staff suffer long Covid, The Guardian 2021.

Unable to access hospital care and tests

Between March and September 2020, there was blanket NHS order to hospitals, ambulances, GPs, 111 not to admit anyone to hospital unless they were ‘blue around the lips’ or unconscious. If you talk to people with Long Covid, you will find many were very ill during this time but turned away by all health services. This led to many being inaccurately labelled ‘mild' because not admitted.

At the start of the pandemic, testing was not widely available and evidence showed a high false negative rate. Despite this awareness, many people suffering long term symptoms have been told that they could not have had Covid if they had not had a positive test result. Consequently, many people with Long Covid have since faced numerous barriers when trying to access medical help. Some have had multiple A&E attendances with frightening symptoms like chest pain and fast heart rate, to be told they were suffering from anxiety.

The announcement of Long Covid clinics brought hope

In September 2020, the Royal College of General Practitioners called for a national network of "post-Covid" clinics to be set up. In October, NHS England released a 5-point plan for Long Covid.

The announcement stated that Long Covid clinics would:

“…involve each part of the country designating expert one-stop services in line with an agreed national specification. Post-covid services will provide joined up care for physical and mental health”.

In December, an NHSE press release stated that 69 clinics were already operating.

Many people were very ill, developing new problems, and had been unable to access a health professional. But the announcement gave them a sense of hope, and relief that their experience was finally being recognised and responded to.

Back then, it was estimated 60,000 patients would need to use the service. The latest statistics (April 2021) from the ONS indicate there are now more than 1 million people living with Long Covid in the UK.

Reality of ‘clinics’: not as promised

In January 2021, NHSE renamed the clinics ‘assessment services’ and since then, much of the hope sparked by the initial announcement has faded for a number of reasons.

• A patient survey (presented to NHSE by Long Covid Support), has found that 74% of Long Covid patients struggled to secure referrals to assessment services since publication of the clinical guideline and list of clinics
• Many were offered only a telephone call (with no medical examination), or a physiotherapy referral - neither of which reflect the full spectrum of symptoms or the original promise of a ‘one-stop’ service
• Many patients without a positive test result or previous hospital admission have been denied referrals (despite guidance clearly stating neither should be a requirement)
• Some areas have no Long Covid support service at all, despite the original terms of reference stating the services would be available in ‘every part of the country’
• Two clinics listed as open have been admitted in writing that they are not.

Clinical concerns

The virus affects every organ in the body by causing inflammation in blood vessels. As in hospital patients, there are blood clots, oxygen lack and inflammation. Some of the common problems are heart-related, cognitive and neurological (including pain). There is a big hit to autonomic nervous system. People are more debilitated than with other viruses and seem to need much slower rehabilitation.

We are concerned about serious problems which have been missed. Shockingly, blood clots in lungs and brain, and heart inflammation are being discovered at 13 months post initial infection, after months of pleading to be seen. We are worried about possible long-term effects of late diagnosis and the failure to give known treatments for symptoms.

Devastating impact on lives

The impact of these prolonged symptoms on people’s lives is enormous. Those living with Long Covid have difficulty with daily activities, due to viral effects on the brain and body. Many are unable to work or to look after themselves or their children. These are huge daily concerns for people. Many know something is very wrong in their bodies and are frightened that their level of functioning is not improving.

Too many people living with Long Covid do not feel they have been offered any support, and are distressed, frustrated and confused from being sent pillar to post. This seems particularly cruel as most people with Long Covid have some cognitive impairment.

They feel duped; the clinics promised have not materialised. This affects trust. They feel abandoned by the health services, and angry at being told that it is all anxiety. People accepted (to their detriment) the initial ban on attending hospital but not the continued blockages since.

What needs to happen?

People who are ill need urgent ‘one-stop’ shop assessment services, to be screened for Long Covid problems and red flag symptoms.

• Access to relevant specialists should be straightforward.
• Patients should no longer face disbelief or labelling.
• Symptoms which can be treated (eg pain, high heart rate, angina) must be treated early to relieve suffering.
• Blood clots need to be identified and treated urgently.
• GPs and specialists need urgent education, including how to manage autonomic problems.

Early treatment leads to earlier recovery and prevents complications. This can also help people to return to work. It is a duty of all healthcare professionals to stop early damage becoming worse.  

One year later, we are still saying the same things. Who is listening?

Clare Rayner

Last Friday I took my mother-in-law, Margaret, for her vaccination at a local vaccination centre in Chiswick, London. 

 First let me start with what is being done well.

We received a call from our GP practice nurse on Thursday offering Margaret an appointment for the Pfizer vaccine the following day. Margaret is 77 and, because several over-80s had cancelled or declined appointments, GP practices had been contacted to open up the appointments to the clinically vulnerable over 75s.

Once defrosted, the Pfizer vaccine has to be used; so to avoid waste, they had proactively sought to get other patients to use up the appointment slots that were free. The GP practice nurse forewarned us about the queues, so my husband and I were able to safety plan to ensure Margaret, who is wheelchair bound and has chronic obstructive pulmonary disease (COPD) and hypertrophic cardiomyopathy, would not be queuing in the cold for an hour. I am sure you have seen the news stories about non-socially distanced, long waits outside vaccination centres in the media this weekend.

 Patient safety concerns:

1.  Social distancing – before.* Once inside the vaccination centre, it is not physically possible to maintain one-metre plus social distancing as the centre is so busy. All staff were wearing masks. Most patients and carers were too, but some patients have exemptions. A positive in our centre is that the windows were all open and the staff were doing their level best to ventilate the room. However, we ended up in a cubicle far away from the windows, close to the door, and so there was a flow of patients, carers and staff who, even with their best efforts, could not maintain social distancing.
    
2.  Social distancing – after. After receiving the vaccination, patients are asked to wait 15 minutes before leaving. This is to ensure they are observed for a period of time in case they have an adverse reaction. It is best practice in vaccination administration and adheres to national and manufacturers' guidelines. However, in following best practice, patients and carers are kept in an environment where social distancing is not viable for a time period which increases the risk of COVID-19 transmission.  
   
   I am wondering if there needs to be a policy-level conversation about trading off the risk of transmission versus adverse transfusion reaction? Or do we need to reflect on the side effect of the goal to vaccinate the most clinically vulnerable as soon as possible may be introducing congestion risks at vaccination centres?
   
   Is there scope to reduce the 15 minute observation period post-vaccination? I know some GP practices and community pharmacies have reduced the observation time frame for flu vaccines.
    
3. Consent. As the cubicles are back to back, you can hear the conversation with the patient in the next cubicle. Next to Margaret was a lady who at first was not clear why she had been sent for the appointment and who then spent around ten minutes with both a nurse and doctor trying to decide whether she wanted to consent to have the vaccine or not. She did not come across as someone who had lacked capacity, rather just unclear about why she had been sent for and who then (understandably) had to ask the questions she needed answering.  
   
   My reflection is that the consent conversation needs to start when the appointment is booked or confirmed over the telephone. This happened for Margaret, and it meant that on the day of the appointment staff were able to quickly confirm consent, check if she had had reactions to previous vaccines, taking anticoagulation medication or symptomatic, before administering the vaccine.  If a patient is having surgery, good consent practice is to start the consent conversation at the outpatient appointments. Then confirm it on the morning of the procedure. 
    
4. Human Factors and the last task step in a sequence of tasks. It is a well documented source of human error that human beings have a tendency to omit the last task step in a sequence of tasks if the primary goal has been achieved before the last task step occurs. Think photocopying and walking away from the photocopying machine once you had done the photocopying, then realising that you have left the originals on the flatbed. 
   
   In the context of vaccination centres, the last task step is getting the patient and their carer out of the building after they have been told they can leave. In our case, this meant being directed to a small lift which the over-80s were crowding into. Some had walking sticks, so the stairs are not an option. Some just were not aware of the risk of crowding in a lift with other folk. There was no-one managing the exit process from the building, so there was congestion in the lift area, stairwell and the lift itself.  
   
   My point is that we need to identify vaccination centres where the environment is suited to the user (i.e. over-75s who may have mobility issues) and where over-crowding at entry and exit points are thought through/planned for. Guidelines and staff deployment/education needs to cover the omission of the last task step problem in the vaccination centre context. Otherwise the exit becomes a transmission hotspot.

I am mindful one response to my reflections may be that the risk is not that great because the patients have been vaccinated by the time they leave. However, my understanding is that the vaccine is not effective for a few weeks and it is only patients who are vaccinated. The carers/relatives who accompany them are not eligible to be vaccinated yet, so are very exposed. Many of the relatives/carers I observed were in the 50s or 60s, and they, like me, were accompanying a loved-one who was frail.

Regulators and Public Health England might find it useful to use the discussion threads on community websites to capture patient and carer feedback. Charles Vincent, Susan Burnett and I have written on the importance of soft safety intelligence like this in our Health Foundation-funded Measurement and Monitoring of Safety Framework. The discussion forum on Chiswick's website, for example, provides a timely feedback mechanism.

Given the social distancing challenges I have mentioned, is anyone measuring how many patients get COVID-19 in the weeks between being vaccinated and the vaccine taking effect? And how many accompanying carers? We need to be measuring potential transmission in vaccination centres in the same way we trace back whether a patient has visited a restaurant, supermarket, had contact with school children etc..

What do you think?

The staff at the vaccination centres are another example of our wonderful NHS teams; doing their best in an environment not best suited to the task. Let’s not forget they too may be at risk; so as well as the patient safety issues I have highlighted, we need to get the task and environmental design right to keep NHS staff safe. Going forward, we need to proactively iron out these safety issues. Otherwise, we may find in a few months time that vaccination centres have been a breeding ground for the fourth wave.

*For other patient and carers' views click on the Forum tab on www.chiswickw4.com, and the thread started on 6 January referred to as 'the over-80s queuing for the vaccine.'

Jane Carthey

Since the summer, there has been a growing degree of focus on the issue of Long COVID, with patient groups working hard to make their voices heard and an increase in research to better understand the causes, treatment options and likely outcome for people living with Long COVID. In the UK there has been a formal recognition from the NHS of the need for increased care and support for Long COVID patients.[2]

In this blog, we will outline some of the key patient safety issues concerning Long COVID and recent steps the NHS has taken to increase provision and support for these patients. We will then focus on the importance of engagement and information sharing with patients, outlining suggestions on how we feel this needs to be improved.

Patient safety concerns for Long COVID patients

The National Institute for Health and Care Excellence (NICE) recently published a guideline defining Long COVID (which they refer to as Post-Covid-19 syndrome) as:

“Signs and symptoms that develop during or following an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body. Post-COVID-19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.”[3]

Many of those affected by this condition did not have an initial COVID-19 infection severe enough to be admitted to hospital, but instead managed their symptoms and recovery at home. We have highlighted on the hub, our platform for patient safety, the experiences and difficulties faced by patients in this position, such that of Barbara Melville and Dr Jake Suett.[4] [5]

Drawing insights from patient experiences shared on the hub and by members of Long COVID support groups formed on social media, we highlighted a number of key patient safety issues that require action.[1]  One of the key issues is the need to start listening and learning from patients living with Long COVID, to help inform further research and to understand and address their support needs.

People living with Long COVID have told us of friends and family who do not believe the extent or impact of their illness, employers who are pushing them to return to work before they are physically ready and some doctors who don't believe that Long COVID exists. We are also hearing that many are unable to access financial support or benefits, despite being unable to work, which is understandably taking its toll.

Although there is now greater recognition of this condition, there remains worrying gaps in both clinical and public awareness; this is hampering efforts to effectively care and treat Long COVID patients. 

How has the healthcare system responded?

From July onwards, the NHS has begun to put in place new support and guidance for patients living with Long COVID. Below is a brief timeline outlining some of the key developments to date:

• 5 July – The launch of the first phase of a new online rehabilitation service, Your COVID Recovery, is announced.[6] The website went live at the end of the month. Initial information was general to those recovering from COVID-19, not specific to Long COVID patients.
• 7 October – The NHS announces a new five-part action plan to support Long COVID patients.[7]
• 30 October – NICE and the Scottish Intercollegiate Guidelines Network (SIGN) set out the scope for developing formal guidance for managing the long-term effects of COVID-19.[8]
• 5 November – The National Institute for Health Research (NIHR) and UK Research and Innovation launch a £20 million fund for research “into understanding, mitigating and addressing the longer term, physical and mental health effects, of COVID-19 in non-hospitalised individuals”.[9]
• 6 November – NHS publishes new guidance on accessing and referring into a tailored rehabilitation programme, specifically for Long COVID patients, via the Your COVID Recovery platform.[10] Also, referred to as ‘Phase 2’, this initially went live on 31 October, with plans for the service to be rolled out using a phased approach.
• 6 November – NHS published commissioning guidance to assist local healthcare systems to establish Long COVID assessment clinics.[11]
• 15 November – NHS announce the launch of a network of more than 40 specialist clinics within the coming weeks to support patients.[12]

Future activity (timescales yet to be confirmed)

•  National rollout of Your COVID Recovery Phase 2 training to GPs.
• Publication of guidance on the referral by GPs of patients living with Long COVID to Your COVID Recovery Phase 2.
• Publication of guidance on the referral of patients to Long COVID clinics.
• Publication of guidance on patients receiving assessments by the Long COVID clinics and referral for diagnosis and treatment to secondary care.
• Publication of guidance on patients receiving assessments by the Long COVID clinics and referral for diagnosis and treatment to community-based rehabilitation and support services.

Greater clarity needed around support for Long COVID patients

Patient Safety Learning welcomes the progress that has been made since the summer to begin putting in place the support needed for Long COVID patients. In October, we were invited by the NHS to participate in their Long COVID taskforce and have been feeding back our views as an active stakeholder in this group.

However, while we understand the difficulties in responding to a complex new health condition, particularly within the pressures of the pandemic, we do feel that significant improvements could be made to how the NHS is engaging and communicating with patients.

As we describe in our report A Blueprint for Action, we believe it is vital that patients are effectively engaged in their care; there is clear research evidence that active patient engagement reduces unsafe care.[13] This principle is recognised by the NHS, who have recently developed a new framework for involving patients in patient safety.

To ensure Long COVID patients are properly engaged in their care and receive access to the support that they need, we believe further action is needed in several areas.

Long COVID clinics

There are a range of unanswered questions about the future provision of Long COVID clinics. We had initially raised this issue with the NHS in September as a result of confusion stemming from comments by the Secretary of State for Health and Social Care, Matt Hancock MP, that these clinics were already up and running, despite no information in the public domain to this effect.[14] [15]

In its most recent announcement on this issue, the NHS has now stated that there will be more than 40 of these specialist clinics opened across different regions of England in the coming weeks.[12] We believe that it would be beneficial to provide Long COVID patients with greater clarity on this, specifically by:

• Publishing a list of the clinics by location.
• Announcing a more specific timeframe for completed roll-out. Currently available information only states that these are “due to start opening at the end of November”.[12]
• Setting out plans to address regional disparities, should there be any, to avoid a post-code lottery of access.
• Explain the rationale for the chosen locations of Long COVID clinics.

Your COVID Recovery, Phase 2

When Your COVID Recovery was launched in July, the NHS stated that the second phase, in which people would be able to access personalised support packages, would be made available “later in the summer”.[6] Guidance published at the start of November on the service stated that the second phase was live on 31 October and “rolled out using a phrased approach”.[10] Meanwhile, recent reports in the Health Service Journal have indicated that this national roll-out will not take place until “at least January 2021, with no date confirmed for launch beyond that”.[16] There is also a need for GPs to undertake specific training to be able to refer patients into the Phase 2 rehabilitation service. It is unclear how many practices have received this training to date, where they are located or how long it will take for this referral system to be available nationally.

The gradual shifting of the deadlines around this key pillar of support for Long COVID patients has not been clearly communicated. Patients waiting to access this NHS support do not have a clear idea of when they may be able to receive treatment. We believe that the NHS should:

• Provide clarity on the plans and expected timescales for rolling out training to GPs on the Phase 2 service nationally.
• Provide regular progress updates on the roll-out and availability of this service.

Patient-focused information

As it may be apparent from the timeline outlined earlier, much of the activity from the NHS to date has understandably been focused on the practicalities in setting up new support and provision for Long COVID patients. While this is undoubtedly important, we feel there is a clear gap in terms of communicating effectively with people living with Long COVID.

In looking to improve the availability of patient resources on this issue, Patient Safety Learning has developed a patient information leaflet aimed to help Long COVID patients understand what they can expect from their GP.[17] This drew on earlier guidance issued by the Royal College of General Practitioners (RCGP) to healthcare professionals directly.[18]

We hope this simple guide will empower and reassure patients, providing them with an evidence-based document that can be shared with those around them. We believe that this will also help raise awareness of the health challenges Long COVID patients are facing so that their health and recovery needs can be better met. 

We believe this type of guidance should be being provided by the NHS directly to patients.

The necessity of a clear plan from the NHS for patient engagement

 Patient Safety Learning believes that a clear plan from the NHS for engaging and communicating with Long COVID patients regarding the roll-out of support should include:

• NHS England and NHS Improvement and others working in partnership with people living with Long COVID and the public, to improve patient safety, patient experience and health outcomes; supporting people to live healthier lives. This would include a developed and published plan for patient and public engagement.[19]
• Information for the healthcare system to inform the recognition, diagnosis and treatment of people living with Long COVID. Information for primary and secondary care, ambulance services and the 111 service, Royal Colleges, commissioners etc. This should consist of personal stories to outline the lived experience of patients and highlight the challenges that need to addressed, including how secondary care should be responding to GP referrals and how these services relate to the community-based ‘virtual ward’ initiatives being established.
• Information for people living with Long COVID that informs and empowers them: what services are being developed and when; how they will be able to access these services; what we know about Long COVID, its impact and how people might experience it; what research is being undertaken; how patients’ voices and experiences are informing the design of the system response; how people can access support, advice and resources from others such as employers, benefits agencies etc. We believe that there is an urgent wider need for this type of public information, separate to the second phase of Your COVID Recovery, which can only be accessed after a patient is referred by a GP.
• Information to wider society that will influence people’s attitudes and responses to those with Long COVID; information to employers, the benefits system, advice services (such as Citizen’s Advice, Healthwatch, Patients Association and others), media. Such information may also relate to the scale and impact of Long COVID and give advice around personal decisions on behaviours that could prevent people from being infected and infecting others.
• Information detailing how access to services and support for Long COVID patients may differ, depending which part of the UK they live in, and signposting to the most appropriate guidance in England, Northern Ireland, Scotland, and Wales, as appropriate.

It is vital that the NHS provides regular, up-to-date information for people living with Long COVID. This information needs to be clear, transparent and widely accessible, in accordance to the NHS Information Standard.[20] We also believe there is a need to continue to raise awareness of Long COVID among all healthcare staff and the wider public so that patients suffering prolonged symptoms can be better supported in accessing safe, quality care.

References

1.    Patient Safety Learning, Patient safety concerns for Long COVID patients, Patient Safety Learning’s the hub, 6 July 2020.

2.    Patient Safety Learning, NHS announces five-point package to support Long COVID patients, 7 October 2020.

3.    NICE, Scottish Intercollegiate Guidelines Network (SIGN) and Royal College of General Practitioners, COVID-19 guideline scope: management of long—term effects of COVID-19, 30 October 2020.

4.    Barbara Melville, Dismissed, unsupported and misdiagnosed: Interview with a COVID-19 ‘long-hauler’, Patient Safety Learning’s the hub, 24 June 2020.

5.    Dr Jake Suett, My experience of suspected ‘Long COVID’, Patient Safety Learning’s the hub, 10 July 2020.

6.    NHS England and NHS Improvement, NHS to launch ground breaking online COVID-19 rehab service, 5 July 2020.

7.    NHS England and NHS Improvement, NHS To Offer ‘Long Covid’ Sufferers Help at Specialist Centres, 7 October 2020.

8.    NICE, Covid-19 guideline: management of the long-term effects of COVID-19, Last Accessed 17 November 2020.

9.    NIHR, Research into the longer term effects of COVID-19 in non-hospitalised individuals – Call scope, 5 November 2020.

10. NHS England and NHS Improvement, Your COVID Recovery. Guidance for the online interactive platform, 6 November 2020.

11. NHS England and NHS Improvement, National guidance for post-COVID assessment clinics, 6 November 2020.

12. NHS England and NHS Improvement, NHS launches 40 ‘long COVID’ clinics to tackle persistent symptoms, 15 November 2020.

13. Patient Safety Learning, The Patient-Safe Future: A Blueprint for Action, 2019.

14. Health and Social Care Committee, Oral evidence: Social care: funding and workforce, HC 206, 8 September 2020. Matt Hancock MP commented in a select committee that “The NHS set up Long COVID clinics and announced them in July. I am concerned by reports this morning from the Royal College of GPs that not all GPs know how to ensure that people can get into those services. That is something I will take up with the NHS and that I am sure we will be able to resolve”.

15. Patient Safety Learning, Patient Safety Learning calls for the NHS to publish details of post-COVID clinics, 11 September 2020.

16. HSJ, Major delays for new NHS England covid service, 16 November 2020.

17. Patient Safety Learning, Post-COVID-19 syndrome: What support can patients expect from their GP, Patient Safety Learning’s the hub, 19 November 2020.

18. RCGP, Management of the long term effects of COVID-19. The RCGP response and top tips for caring for our patients, V1 30 October 2020.

19. NHS England and NHS Improvement, Patient and Public Participation Policy, April 2017.

20. NHS England and NHS Improvement, The Information Standard, Last Accessed 19 November 2020.