UPDATED 24/06/2020 (all links and quotes checked 23/06/2020)
We will continue to monitor and update this page as information and clinical evidence becomes available. In the meantime, some, if possible, may choose to err on the side of caution.
Please send us feedback HERE to inform us how we can improve this summary and provide additional information to help you during this challenging time
Members will be understandably concerned about Coronavirus (COVID-19). We recommend you avoid speculation and look up reputable sources on the outbreak. Review official Government and NHS advice and updates and if the news coverage is causing you stress and anxiety limit your news intake and always check that offers of help are genuine!
Behçet’s UK is not in a position to offer direct medical advice so should you have specific concerns you must speak to your consultant or GP who is responsible for your treatment, who will be fully aware of the history of your condition and your current treatment regime.
“Behçet’s per se [alone] may increase the risk for coronavirus, but additional features such as internal organ involvement, co-morbidities and/or immunosuppressive agents are required for formal shielding.”
BSR Clinical guide for the management of Rheumatology patients during the coronavirus pandemic. 8 April 2020 Version 2
It is important that you consult your treating clinician on exact prognosis. However, for those GP’s or clinicians that are not over-familiar with the complexities of Behçet’s you can steer them to the following guidance.
NHS ENGLAND BEHÇET’S SYNDROME CENTRES OF EXCELLENCE (Updated 11/06/2020)
Guidance from the NHS England Behçet’s Syndrome Centres of Excellence can be found here:
Medication list which can potentially increase risk in Behçet’s patients
MEDICATION (Updated 01/05/2020)
All patients, including those aged 16 years and under, should continue to take their medication unless directed otherwise by their consultant or if they experience. If you are planning to start or switch to a new medication this may now need to be reviewed. Please remember patients on long-term glucocorticoids (steroids, prednisolone) should not stop these abruptly.
If you develop COVID-19 symptoms
Patients with COVID-19 should not suddenly stop taking their medication but should seek immediate advice from their medical team on which medicines to continue and which to temporarily stop.
The NICE guidelines COVID-19 rapid guideline: rheumatological autoimmune, inflammatory and metabolic bone disorders can be found here
If your condition gets worse, or your symptoms do not get better after 7 days, then use the NHS 111 online coronavirus service, or call NHS 111 and tell them what medication you have been taking.
For medical emergencies dial 999.
Risk group terminology used has varied, which has been unhelpful. We have grouped them to help add clarity.
Every patient is treated on a case by case basis by the treating clinician who has overall responsibility for the coordination of care. Some patients may move from one category to another, and indeed back again, depending on the treatment regime and medication/drugs being administered. This protocol is happening throughout the UK for all patients.
CLINICALLY VULNERABLE / HIGHER RISK (Updated 24/06/2020)
The current government guidelines are for clinically vulnerable people who could be at higher risk of severe illness from coronavirus (COVID-19) and need to be particularly stringent in following social/physical distancing measures.
A firm diagnosis of Behçet’s may place an individual at risk and patients should, therefore, be considered as clinically vulnerable, regardless of medication.
British Society for Rheumatology guidance, see NHS link below, includes the logic for making further assessment using scoring Tables 1 and 2, consequent upon drugs being taken. You can use this to have informed discussions with your GP
Those in the clinically vulnerable group are advised to stay at home as much as possible and should work from home wherever possible. Where you are unable to work from home we strongly suggest speaking to your employer. Advise that Behçet’s places you in the clinically vulnerable person group, that you must stringently follow the social/physical distancing measures in the workplace and discuss how these measures can be put in place for you. See EMPLOYMENT/FINANCE section below for more guidance.
CLINICALLY EXTREMELY VULNERABLE / AT HIGH RISK (Updated 24/06/2020)
The current Government guidelines are for people, including children, who are clinically extremely vulnerable and are at high risk of serious illness from coronavirus (COVID-19) infection should continue to take precautions and practice shielding, but can now benefit from slight relaxation of the previous constraints suggested.
Disease severity, medical history or treatment levels will affect who is in this group. A Behçet’s diagnosis alone would not put a person into the clinically extremely vulnerable category however people with internal organ disease (e.g. heart disease/vascular disease etc.) and on immunosuppressive drugs may fall into the at high risk category. Some individuals may be guided to move in or out of this category dependant on the drug regime prescribed at any given time.
Shielding guidance continues to be updated and varies across the four UK nations so please visit your country’s government website for current advice. See also the updated ADDITIONAL SHIELDING ADVICE section below.
As guidance eases Behçet’s UK advice would be to treat everybody, and everything, as potentially contaminated, and treat accordingly. That does not mean worry about it, just act suitably to remain on the safe side.
IMPORTANT: IF YOU THINK YOU ARE IN THE EXTREMELY VULNERABLE GROUP AND YOU HAVE NOT BEEN CONTACTED BY THE NHS THEN GET IN TOUCH WITH YOUR GP OR SPECIALIST. Only your GP or specialist medical team can add you to the Shielded Patients List.
BRITISH SOCIETY FOR RHEUMATOLOGISTS (BSR) (Updated 23/06/2020)
Additional guidance from the BSR can be found here: (updated 23/06/20)
In addition, the BSR risk stratification guide which will help identify which precautions adult, paediatric and adolescent patients should take can be found here:
BRITISH SOCIETY OF DERMATLOGISTS (BAD) (Updated 11/05/2020)
BAD have released the following statement. This is reviewed and updated as information becomes available.
ASSOCIATION OF BRITISH NEUROLOGIST (ABN) (Updated 11/05/2020)
In co-operation with the Royal College of Physicians, and the Chief Medical Officer’s team, the ABN has produced guidance on the risks from a variety of conditions and treatments. This document can be used to identify those at high, moderate or low risk of complications from COVID-19 infection. The recommendation from the Chief Medical Officer is that high risk patients self-isolate for 3 months.
NEW CLINICIAN RISK GRID FOR COVID-19 RISK AND RARE DISEASE (Added 24/06/2020)
To address anxieties and concerns from patients, careers and patient support groups about their level of risk, the British Society for Genetic Medicine (BSGM) and the Clinical Genetics Society (CGS) have been collaborating with clinical geneticists at GOSH to develop a new Covid-19 risk assessment tool
The assessment tool can be found here: https://redcap.goshdre.com/surveys/index.php?s=TF7YNXMEN7
The risk grid which underpins that tool is available here. The grid is an amalgamation of COVID-19 risk advice from relevant specialties as well as BSGM COVID-19 statement. Patients can use the risk grid to submit details of their condition, which can subsequently help further-inform discussions with their treating clinicians.
UVEITIS / OCULAR INFLAMMATION (Updated 29/04/2020)
A video by Nima Ghadiri, Medical Ophthalmologist based at Moorfields Eye Hospital to give a brief rundown of resources for patients with Uveitis/Ocular Inflammation
GOVERNMENT ADVICE (Updated 11/06/2020)
The UK Government, Welsh Government, Scottish Government and Northern Ireland Executive are all working together to respond to the ongoing outbreak.
Guidelines for social/physical distancing currently apply to all four UK nations but other guidelines and support information is frequently updated and varies between UK countries.
Visit your country’s government site:
NHS ADVICE (Updated 01/05/2020)
Advice for everyone can be found here:
Latest Guidance from NHS England on Vitamin D
Please see the link below, and where appropriate consider the advice.
EMPLOYMENT & FINANCE (Updated 11/06/2020)
Guidelines are available on the government sites (see GOVERNMENT ADVICE section above)
ACAS have provided advice for employees and employers and highlight how those who have Behçet’s are protected from discrimination by law.
“Employers must be especially careful and take extra steps for anyone in their workforce who is in a vulnerable group.”
ACAS (Advisory, Conciliation and Arbitration Service)
The British Standards Institute (BSI) has prepared best practice guidance, building on formal guidance issued by UK Government to safeguard individuals who need to go back to work but remain in the Vulnerable People category.
In addition to the government pages Citizens Advice Bureau have provided a lot of useful information for those affected financially due to coronavirus.
https://www.citizensadvice.org.uk/debt-and-money/if-you-cant-pay-your-bills-because-of-coronavirus/ (Ensure you select the country you live in).
Benefits and Work are summarising the changes that have been implemented due to Coronavirus here and are updating the page regularly. There is a forum and some FAQs. They are also updating their guides
MENTAL HEALTH AND WELL-BEING (Updated 31/03/2020)
Behçet’s UK have been working with Behçet’s Patient Support (who provide non-medical support to the patients at the National Behçet’s Centres of Excellence (NHS England)) to produce useful information to promote positive well-being and how to look after your mental health during this crisis.
Visit the Behçet’s Patient Support page, which is regularly reviewed and updated. Here you will find a lot of useful information, including how to get support if you are shielding or self-isolating, how to prevent the virus spreading, links to improve your mental health and their wellness page which also includes ideas for cooking on a limited food supply.
In addition we have some tips for managing anxiety and information on our Behçet’s UK peer to peer support.
ASSISTANCE WITH EVIDENCE GATHERING
International Society for Behçet’s Disease (Updated 03/04/2020)
Behçet’s UK will be helping the International Society for Behçet’s Disease (ISBD) accumulate much needed stories for developing its experience page.
This is what the ISBD has promulgated thus far to inform clinicians of the current situation.
In the absence of any clinical evidence it is of course a commentary. We would therefore strongly encourage any Behçet’s patient who unfortunately contracts Coronavirus (COVID-19), when they are able, to inform us of their experience, by email firstname.lastname@example.org. We will forward this to ISBD on their behalf.
This will help build a body of experiential evidence. Details including drug regime immediately prior to catching the virus, what drugs ceased during symptoms and those administered, and the effects after would be ideal please (which could follow later/separately). Anything additional would be a bonus and much appreciated.
The European Patient Registry – Part of the Global Rheumatology Alliance (Updated 11/05/2020)
Working with partners across the world, Juvenile Arthritis Research have launched a European patient registry, both for adults and children. Anyone with a rheumatological, autoimmune or autoinflammatory disease is invited to take part. We will ask you a series of questions now, and send follow-up surveys each week so we can learn how COVID-19 may affect you.
COVID-19 Trials (Updated 11/05/2020)
Should you, unfortunately, require hospital treatment you may be asked, or you could volunteer upon admission, to participate in a trial during your treatment. We recommend that you agree but it needs to be a ‘controlled trial’ backed by the NHS Health Research Authority. More details can be found here
ADDITIONAL SHIELDING ADVICE (Updated 24/06/2020)
Full guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19 can be found on the government website (see links under the GOVERNMENT ADVICE section above).
In addition to the information below, if you are shielding and it is not possible for others to help you to get food or medication tips for finding local community support groups are also available on the Behçet’s Patients Support page (see MENTAL HEALTH AND WELL-BEING section above for link).
Royal College of Paediatrics and Child Health (RCPCH) (Added 24/06/2020)
Updated guidance for clinicians about the shielding of clinically vulnerable children and young people from RCPCH can be found here:
Support for vulnerable people (RVS) (Updated 29/04/2020)
The Royal Voluntary Service (RVS) is one of the key services you can access if you are vulnerable and need support. Follow the link below for criteria. The RVS has vetted hundreds of thousands of volunteers who can now shop, bring medication and chat about the current situation and any help you need as a vulnerable person.
England (Updated 24/06/2020)
Further explanation including frequently asked questions on the processes for NHS England can be found here:
To register, either yourself or on behalf of someone else, ideally when you have received a letter from NHS England (NHS Digital) click here: https://www.gov.uk/coronavirus-extremely-vulnerable You are urged to register before 17 July 2020 if you haven’t already!
If you have not received a letter, and think you should have, you must get back to your GP or treating clinician and ask them to add you to the list via their own IT medical system. Without this notification, your ability to register successfully may not work.
Scotland (Updated 24/06/2020)
This document sets out details of the groups considered to be at the highest risk should they contract Covid-19 and who are recommended to take Shielding precautions. It includes how the patients were identified and the codes used to identify them.