Updated 6 May
Members are receiving a large number of queries in relation to COVID-19 (coronavirus), and the risk to patient health. Current advice is that the risk to the general population in the UK remains high.
Our advice is drawn from a number of sources across all four nations of the UK, covers adults, children and young people, and is updated as the situation evolves.
What's changed since the last update?
RCPCH guidance: management of paediatric multisystem inflammatory syndrome associated with COVID-19
NICE rapid review on immunocompromised children and young people
RCPCH evidence resource on COVID-19 in children and young people
Clinical Medicine paper on process and evidence base for shielding guidance
Society for Endocrinology guidance on steroid dosages
Hydroxychloroqine supplies in the UK
Second phase of NHS response to COVID-19 statement from NHS CEO and COO, containing precautionary advice for BAME clinicians and information on video consultation technology
RECOVERY & RECOVERY2 trials for potential COVID-19 treatments
This advice is for clinicians. Patients looking for further information on whether their condition places them in a higher-risk category, or about precautions they should take, are advised to speak to their clinical team, who are best placed to answer specific questions. Versus Arthritis has produced a guide for patients covering some of the most frequently asked questions.
Is there any specific advice on how patients should be managed during this pandemic?
We've worked closely with NHS England to develop resources to guide our members on how to manage their patients. NHS England has published specialty guides on managing patients during the coronavirus pandemic:
These clinical guides explain what steps units should take and how resources should be allocated as infection rates increase.
NHS England updated its clinical guide for the management of rheumatology patients during the coronavirus pandemic (see above). The content remains similar to the previous version, with a new paragraph providing context on the exercise to identify vulnerable patients that require shielding. This guidance provides clarification that our risk stratification for shielding is the gold standard, and should be followed to ensure a consistent approach in paediatric, adolescent and adult rheumatology units.
NICE has now also published a ‘rapid guideline’ on rheumatological autoimmune, inflammatory and metabolic bone disorders, focusing on how to manage disorders during the COVID-19 pandemic, while protecting staff and patients from infection. It also enables services to make the best use of NHS resources.
Self-management resources for those with MSK conditions have been developed by the MSK Leadership Group, supported by NHS England and NHS Improvement. This helps with the delivery of virtual healthcare at this time.
The Scottish Government has guidance for shielding, as well as specific guidance for those with rheumatic conditions.
In a letter about the second phase of NHS response to COVID-19, Sir Simon Stevens, NHS Chief Executive and Amanda Pritchard, NHS Chief Operating Officer recommend the following:
All NHS secondary care providers in England now have access to video consultation technology to deliver some clinical care without the need for in-person contact
As far as practicable, video or telephone appointments should be offered by default for all outpatient activity without a procedure, and unless there are clinical or patient choice reasons to change to replace with in-person contact
Trusts In England should use remote appointments - including video consultations - as a default to triage their elective backlog. They should implement a ‘patient initiated follow up’ approach for suitable appointments - providing patients the means of self-accessing services if required
How should services be prioritised in community settings?
NHS England’s guide on prioritising COVID-19 in community services provides information on how community services can release capacity to support the COVID-19 response. Members should refer to the sections on MSK services (pg. 12) and phlebotomy (pg. 16). Included in the guide are the following points:
Aligned with orthopaedic and rheumatology planning, MUST prioritise triage to enable continued referral of emergency and urgent MSK conditions to secondary care services
Rehabilitation MUST prioritise patients who have had recent elective surgery, fractures or those with acute and/or complex needs, including carers, with a focus to enable self-management
All other rehabilitation work should be stopped, with patients enabled to self-manage (this includes rehabilitation groups)
Where appropriate, virtual and telephone consultations to be implemented
Introduce telephone triage to assess risks of serious complications e.g. Cauda Equina syndrome.
Additionally, NHS England recently published guidance for children with MSK conditions.
How should I determine the level of risk to my patients of COVID-19 and advise them on what precautions to take?
Please refer to our risk stratification guide for rheumatology, which will help identify which precautions adult, paediatric and adolescent patients should take. This advises on whether patients should shield, self-isolate or social distance at patient discretion or maintain social distance due to their level of risk.
We recently removed our scoring grid, initially developed to assist clinicians in identifying patients for shielding; it was never intended to be used by patients to self-identify, though we are aware that the latter approach has been used in a number of areas. There are also some minor discrepancies between the scoring grid and the risk stratification guidance, although it is important to highlight that the grid reliably identifies all patients who meet the shielding criteria, which was its primary purpose.
A paper published in Clinical Medicine explaining the process undertaken to identify our patient group for shielding
For other patients asking what precautions they should take, please refer them to Versus Arthritis’s patient information.
How are vulnerable patients in the UK being identified?
To date, 1.8m patients at high risk have been identified as needing to shield, based on NHS Digital coding and assessments by their respective clinical teams.
Some may have been identified by NHS England as needing to shield, but wouldn’t typically be characterised as high risk by those providing their care. These patients may have received a text message if they take certain immunosuppressive drugs (e.g. Azathioprine, mycophenolate, tacrolimus, sirolimus). This precaution was taken to protect as many people as possible while specialty advice was confirmed.
Not all patients on these medications should be contacted, but members should be aware why some patients may have received this information. It is at the clinician’s discretion to review the guidance and advise appropriately on an individual patient basis.
Further information about the process to identify vulnerable patients can be found here.
Patients in shielding group 5 were identified by cross-referencing information provided by secondary care on prescription of biologic drugs and other secondary care prescriptions with primary care and other centrally held data, using an algorithm similar to the BSR stratification guide.
All patients that have been identified have been sent letters, advising them to adhere to shielding practices. Any additional patients identified by clinicians as at very high risk can be added to the shielding register through your Local Coordinating Team, in your Local Health Board. Guidance for clinicians and patients is available here.
NHS Wales has taken a very similar approach to NHS England in identifying vulnerable patients. More information can be found here. Members in Wales have raised concerns that rheumatology patients might be missed and we understand that many rheumatology departments in Wales have been identifying patients and sending out letters.
We have sent a joint letter, with other voluntary organisations including Cymru Versus Arthritis, to Vaughan Gething, the Minister for Health and Social Services, asking for information about the process. A response is awaited.
Northern Ireland's Department of Health contacted all GPs to identify patients in need of shielding. Rheumatology teams also identified patients, using NHS England and BSR guidance, and issued letters based on our advice to all patients on biologic drugs. Where care arrangements are shared, GPs and/or rheumatology multidisciplinary teams further identified individuals from treatment groups and clinic lists who were considered high risk.
Should patients cease their medication as a precaution against COVID-19?
All patients, including those aged 16 years and under, should continue to take their medication unless directed otherwise by their rheumatology team or GP. If you are planning to start or switch a patient to a new medication this may now need to be reviewed. Patients on long-term glucocorticoids (steroids, prednisolone) should not stop these abruptly.
If patients develop symptoms of any infection, established practice should be followed and immunosuppressive therapy paused for the duration of the infection and until they feel well, in consultation with their rheumatology team. For those on glucocorticoids, the expectation is that treatment should not be stopped abruptly and advice should be sought from their treating team.
Patients on long-term steroids at risk of adrenal suppression
The Society for Endocrinology has produced guidance for management of patients with adrenal insufficiency who have COVID-19. This guidance applies to any patient who has been taking 5mg prednisolone or more for 4 weeks or longer, as this may cause adrenal insufficiency.
As noted in the British National Formulary, adrenal insufficiency due to steroid therapy can persist even after a patient has tapered their prednisolone dose below 5mg, so many rheumatology patients currently taking <5mg prednisolone are also at risk of adrenal insufficiency (see paper published in European Journal of Endocrinology).
Patients with adrenal insufficiency need to temporarily increase their steroid dose if they have any significant intercurrent infection. Patients with COVID-19 may have high fever or other systemic symptoms for many hours of the day. In COVID-19, therefore, the standard advice to double the prednisolone dose in the event of significant intercurrent illness may not be sufficient. This can be applied to rheumatology patients as follows:
Patients on 5-15 mg prednisolone daily should take 10 mg prednisolone every 12 hours
Patients on oral prednisolone >15 mg should continue their usual dose but take it split into two equal doses of at least 10 mg every 12 hours
Patients with COVID-19 may have large insensible water losses, and should be advised to drink plenty of fluids especially if they may have adrenal insufficiency
Patients can be issued with the new NHS emergency steroid card which signposts healthcare providers to the latest guidance on management of adrenal crisis
Starting and or escalating treatment during COVID-19?
Patients will be nervous about starting any treatment that might increase their risk of infection. A discussion on treatment decisions should take place, including consideration that deferring starting treatment (biologics or DMARDs) might be the correct approach. Please be aware that co-morbidities significantly increase the risk of serious infection with COVID-19, and any decision to start treatment in patients >70 years, or for those with pre-existing Diabetes Mellitus, lung disease, IHD or hypertension must be considered carefully.
What’s the most appropriate treatment option if treatment needs starting or escalating?
For patients starting DMARDS, consider using those with a shorter half-life. If appropriate, opt for sulfasalazine and/or hydroxychloroquine rather than methotrexate or leflunomide. For patients starting biologic or small molecule or switching biologic drugs, please discuss carefully with them; the risk of infection is highest in the first 4-6 months after starting treatment.
If there is significant disease activity and the patient understands the risk, then it is acceptable to move forward with these drugs. Otherwise, we recommend considering postponing starting treatment for 2-3 months. Again, we advise considering the use of drugs with the shortest half-life (eg Etanercept, JAKi). Please note: some homecare providers have stopped new registrations, so you may have to come up with a local alternative arrangement for issuing prescriptions (eg FP10s).
Some providers are no longer sending nurses out to demonstrate how to give the first injection - this is something that needs an alternative arrangement.
Should I still be injecting corticosteroids during the current COVID-19 pandemic?
As is current practice, injections must not be undertaken in individuals with active infections. In the current situation, the potential therefore arises to do harm to those who may be incubating or later develop COVID-19. Current WHO guidance for the management of severe acute respiratory infection in patients with COVID-19 is to avoid giving systemic corticosteroids unless indicated for another reason.
There has been some concern about the use of non-steroidal anti-inflammatory medications (NSAIDs) in relation to COVID-19, following recent comments by the French authorities. In the absence of conclusive evidence, the Committee of Human Medicines (an advisory body of MHRA) and NICE have been asked to review the evidence. For now, advice for patients with confirmed or suspected COVID-19 is to use paracetamol in preference to NSAIDs. Those currently on NSAIDs for other medical reasons (e.g. arthritis) should not, however, stop them.
We have separate guidance on this. Read the separate statement here.
Role of Vitamin D supplementation
NHS England: guidance on vitamin D supplementation (revised guidance is that if you're not going outdoors often, you should consider taking a daily supplement with 10 micrograms of vitamin D
Supplies of hydroxychloroquine in the UK
We raised this with NHS England, the Welsh Government and the Department for Health in Northern Ireland and were assured that sufficient supplies are currently available in England, Northern Ireland and Wales. Stock has reportedly been low in England, but further supplies have now been released to wholesalers. Relevant pharmacies should be able to order what they need. If this is not the case, please contact us.
We also worked with MSPs in the Scottish Parliament to seek similar assurances. A response to our Written Parliamentary Question S5W-28751 is due on 12 May.
What about frequency of blood testing?
Members may need to be flexible about blood testing for patients on stable DMARDs in the current pandemic. It is usually safe to reduce blood testing frequency to three-monthly or even less in stable patients. Departments will need to review cases on an individual basis and weigh up the risks of continuing without blood testing, compared to the benefit of staying on DMARDS.
Should immunosuppressed patients be offered alternative clinic appointments?
Clinicians should now look to remove the need for patients to attend face-to-face appointments wherever possible. This might involve telephone appointments or video consultations; NHSX and the Information Commissioners Office have permitted the NHS to use WhatsApp/FaceTime/Skype for patients given the urgent nature of the situation. Please see this NHS guidance for more.
Latest advice for children, young people and their families
In March and April 2020 a small number of children and young people were identified as acutely unwell, often requiring paediatric intensive care unit (PICU) input, with an unusual hyperinflammatory condition. This rare syndrome shares common features with other paediatric inflammatory conditions including Kawasaki Disease and forms of Toxic Shock Syndrome. RCPCH and NHS England produced current evidence, management guidance and research links.
A British Paediatric Surveillance Unit data collection study will be sent to all UK paediatricians over the coming days. BPSU is a centre for rare paediatric and adolescent disease surveillance, investigating how many children in the UK and Republic of Ireland are affected by particular rare diseases, conditions or treatments each year. Details will be included in our next update.
What steps should units undertake to effectively prepare for an increase in infected patients?
NHS England has published advice (table 3) on the prevalence of COVID-19 infection and associated available hospital resources.
Each NHS organisation has an Accountable Emergency Officer (AEO) who is responsible for overseeing preparations. Their role includes:
Acute care providers have also been asked to undertake a number of steps, including:
Reviewing all pathways, specifically those in 'medicine' that support those with respiratory illness and considering the impact a possible surge in medical patients might have on services and stocks
Reviewing critical care and high dependency capacity and consider how this could be increased and the impact of doing so.
Is there any specific advice for health professionals considered at risk?
Immunosuppressed healthcare workers should ensure that their line manager/clinical lead, occupational health and treating rheumatologist are all aware of their medication and scope of practice. Healthcare professionals should follow the advice of their rheumatology team.
According to emerging UK and international data, people from Black, Asian and Minority Ethnic (BAME) backgrounds are being disproportionately affected by COVID-19. The Department for Health and Social Care asked Public Health England to investigate; prior to the publication of their report and guidance, on a precautionary basis, it's recommended by the NHS that employers should risk-assess staff at potentially greater risk and make appropriate arrangements accordingly.
NHS Scotland: guidance for healthcare workers with underlying health conditions.
Is there any rheumatology-specific data on the impact of coronavirus to date?
Research exploring the effectiveness of various rheumatic drugs in treating COVID-19 is underway; information remains limited at this stage. COVID-19 appears to affect children, young people and adults differently, with infections milder in children, although we don’t yet know exactly why this is the case.
We are supporting two initiatives helping inform practice:
EULAR COVID-19 Database: the European Data portal for EU and other European patients (children, young people and adults) is now live. The database isn’t classed as a research study and UK NHS ethics approval is not required. There’s no requirement for patient consent and the database collects anonymised patient data only. Clinicians are encouraged to report all cases of COVID-19 in their rheumatology patients, regardless of severity, and to report cases where there’s been a high suspicion of COVID-19, and to indicate that this is unconfirmed. Reporting a case should take 5-7 minutes
European Patient Registry: EULAR and PRES support a patient self-report register. Patients register and enter their own data
RECOVERY trial: four different treatment regiments for COVID-19
RECOVERY 2: further randomisation of patients who’ve already consented and been rand randomised to the RECOVERY trial. If they remain unwell with a CRP > 75mg/L and an ongoing requirement for oxygen, they’ll receive either standard care or a single infusion of Tocilizumab, which can be repeated 12-24 hours after the first if there’s an inadequate response
Rheumatologists have much more familiarity with and experience of the use and risks of Tocilizumab than acute physicians and intensivists likely to be responsible for the clinical care of these patients, and we encourage all UK rheumatologists to contact their local R&D Leads if they have not already done so to discuss how they can support recruitment to RECOVERY2.
Where can I access further advice?
The most up-to-date advice and guidance for clinicians can be found here. We would encourage members and patients to refer to this information for any queries. If you’d like to discuss a specific issue, you can also contact the Policy team.
Our members can access a dedicated forum by visiting the MyBSR section of our website, where you can discuss recent developments with colleagues, pose questions or share local practice/guidance.
For advice specific to any of the devolved nations, please refer to each nation's public health body: