Coronavirus (COVID-19)

Behçet’s & Coronavirus
(COVID-19)

UPDATED 12/04/2021 (all links and quotes checked 12/04/2021)
We will continue to monitor and update this page as information and clinical evidence becomes available.

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.

It is important that you consult your treating clinician on the 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.

BEHÇET’S CENTRES OF EXCELLENCE
VACCINE FOR COVID-19 Updated 12/04/2021
MEDICATION Updated 12/04/2021
CLINICALLY VULNERABLE
CLINICALLY EXTREMELY VULNERABLE
BRITISH SOCIETY FOR RHEUMATOLOGISTS Updated 12/04/2021
BRITISH ASSOCIATION OF DERMATOLOGISTS
ASSOCIATION OF BRITISH NEUROLOGIST
ROYAL COLLEGE OF PAEDIATRICS AND CHILD HEALTH Updated 12/04/2021
CLINICIAN RISK GRID FOR COVID-19
UVEITIS / OCULAR INFLAMMATION
GOVERNMENT ADVICE Updated 12/04/2021
NHS ADVICE
EMPLOYMENT & FINANCE Updated 12/04/2021
MENTAL HEALTH AND WELL-BEING
ASSISTING WITH COVID EVIDENCE GATHERING
ADDITIONAL ADVICE FOR THOSE SHIELDING Updated 12/04/2021
TIPS FOR STAYING SAFE

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


NHS ENGLAND BEHÇET’S SYNDROME CENTRES OF EXCELLENCE
Updated 18/02/2021

Guidance from the NHS England Behçet’s Syndrome Centres of Excellence can be found here:

Am I at increased risk of severe illness if I catch Coronavirus? updated 01/02/2021

Patient Information Leaflet on COVID-19 & Influenza updated 25/08/2020

See also section VACCINE FOR COVID-19


VACCINE FOR COVID-19
Updated 12/04/2021

GUIDANCE FOR ADULT BEHÇET’S PATIENTS
Updated 12/04/2021

The Medical Advisory Panel and Behçet’s Centres of Excellence recommend Pfizer/BioNTech Covid-19 and Oxford/AstraZeneca  COVID-19 Vaccines for Behçet’s patients in line with the

We are awaiting a statement for the Moderna vaccine.

London Behçet’s Centre of Excellence – vaccine information updated 16/02/2021
Birmingham and Liverpool Behçet’s Centre of Excellence – COVID and vaccine information updated 01/02/2021

Consensus at the International Society for Behçet’s Disease COVID webinar in January 2021 would be not to have the vaccine during a significant flare

See also section BRITISH SOCIETY FOR RHEUMATOLOGISTS (BSR) below.

ALLERGIC REACTION – ANAPHYLAXIS
Updated 18/02/2021

The vaccine should not be given to those who have had a previous systemic allergic reaction (including immediate-onset anaphylaxis) to:

  • a previous dose of the same COVID-19 vaccine
  • any component (excipient) of the COVID-19 vaccine e.g. polyethylene glycol

See COVID-19 Green Book Chapter 14a from page 16 onwards for more details.

CHILDREN
Updated 18/02/2021

SARS-CoV-2 vaccine trials have only just begun in children and there are, therefore, very limited data on safety and effectiveness in this group.  COVID-19 vaccines are not routinely recommended for children and young people under 16 years of age.

More information can be found on page 15 of COVID-19 Green Book Chapter 14a

VACCINE ROLLOUT PROGRAMME
Updated 07/04/2021

Use the following links to view the current vaccine rollout programme for your nation.

England
Scotland
Northern Ireland
Wales

Public Health England – Vaccination guide for adults (updated 07/04/2021)

VACCINE PRIORITY GROUPS
Updated 12/04/2021

The Joint Committee on Vaccination and Immunisation (JCVI) have published the priority groups for vaccine rollout which can be found here: JCVI Priority Groups 30 Dec 2020

Please bear in mind that the vaccine priority order has been reviewed regularly so this may change again.

PRIORITY FOR ADULTS LIVING WITH THOSE WHO ARE IMMUNOSUPPRESSED

The JCVI have now advised prioritising the COVID vaccine for household contacts of immunosuppressed adults.

New vaccine advice for adults living with adults who are immunosuppressed 29/03/2021

PRIORITY GROUP 4

Behçet’s patients in the Clinically Extremely Vulnerable group (who are on the shielding register) will be vaccinated in priority group 4

PRIORITY GROUP 6

Unfortunately, Behçet’s will not be listed as a condition that will automatically result in all diagnosed patients being included in vaccine priority group 6. The remaining Behçet’s patients will be evaluated on the basis of their age and underlying health conditions that may contribute to their risk assessment.

Behçet’s patients who aren’t in the CEV group but are still on significant immunosuppression (not including colchicine) should be included in this group. The Medical Advisory Panel have suggested that if a patient is normally advised to have the annual flu vaccine they should be included in group 6, and you should advise your GP or medical centre accordingly.

If you don’t meet the criteria for group 6 you may be understandably concerned. To allay these concerns, we feel it would be beneficial to highlight that at the recent International Society for Behçet’s Disease COVID webinar (Jan 2021), based on current international experience the clinical consensus is that Behçet’s alone, if well controlled, is not felt to place an individual at greater risk from COVID.  ISBD COVID webinar summary

REGULATORY APPROVAL OF COVID-19 VACCINES
Updated 12/04/2021

Regulatory approval of Pfizer BioNTech vaccine for COVID-19 updated 31/03/2021
Regulatory approval of COVID-19 Vaccine AstraZeneca updated 07/04/2021
Regulatory approval of COVID-19 Vaccine Moderna updated 01/04/2021


MEDICATION
Updated 12/04/2021

All Behçet’s patients, including those aged 16 years and under, should continue to take their medication unless directed otherwise by their consultant. 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
Updated 12/04/2021

Behçet’s 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.

NICE guidelines can be found here: COVID-19 rapid guideline: rheumatological autoimmune, inflammatory and metabolic bone disorders (updated 31/03/2021)

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.

YOUR COVID RECOVERY
Added 02/11/2020

As you find yourself recovering from COVID-19 you may still be coming to terms with the impact the virus has had on both your body and mind.

Your COVID Recovery helps you to understand what has happened and what you might expect as part of your recovery.

Your COVID Recovery


CLINICALLY VULNERABLE / HIGHER RISK
Updated 05/01/2021

A firm diagnosis of Behçet’s may place an individual at risk and patients should, therefore, be considered clinically vulnerable, regardless of medication.

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.

See EMPLOYMENT & FINANCE section for guidance if you are in this category and unable to work from home.

See TIPS FOR STAYING SAFE below is useful for people in this group.


CLINICALLY EXTREMELY VULNERABLE / AT HIGH RISK
Updated 05/01/2021

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 be considered clinically extremely vulnerable.

Some individuals may be guided to move in or out of this category dependant on the drug regime prescribed at any given time.

People in this group were all previously advised to shield however the governments in all four UK nations are now offering guidance based on regional infection rates.  See the section ADDITIONAL ADVICE FOR THOSE ON THE SHIELDING REGISTER below for guidance for your nation.

See EMPLOYMENT & FINANCE section below for more guidance.

CLINICALLY EXTREMELY VULNERABLE CHILDREN AND YOUNG PEOPLE
Updated 05/01/2021

Specialists in paediatric medicine have reviewed the latest evidence on the level of risk posed to children and young people from COVID-19.

The latest evidence indicates that the risk of serious illness for most children and young people is low. It is expected that fewer children and young people will be included on the shielded patient list.

For additional guidance for children and young people see ROYAL COLLEGE OF PAEDIATRICS AND CHILD HEALTH (RCPCH) section below.


BRITISH SOCIETY FOR RHEUMATOLOGISTS (BSR)
Updated 12/04/2021

BSR guidance on COVID-19 (updated 08/04/2021)

In addition, the BSR risk stratification guide will help identify which precautions adult, pediatric and adolescent patients should take (updated 24/03/2020)


BRITISH ASSOCIATION OF DERMATOLOGISTS (BAD)
Updated 04/02/2021

COVID-19: Provisional Guidance on Vaccination (updated 04/02/2021)

Dermatology Advice Regarding Medication Acting on the Immune System: Adults, Children and Young People (updated 25/11/2020)

BAD statement on shielding of higher risk dermatology patients (updated 03/04/2020)

Covid-19 (Coronavirus): Immunosuppressive treatments in dermatology (updated 03/04/2020)


ASSOCIATION OF BRITISH NEUROLOGIST (ABN)
Updated 11/05/2020

ABN Guidance on COVID-19 for people with neurological conditions, their doctors and carers (updated 09/04/2020)


ROYAL COLLEGE OF PAEDIATRICS AND CHILD HEALTH (RCPCH)
Updated 12/04/2021

Updated guidance for clinicians about the shielding of clinically vulnerable children and young people from RCPCH can be found here:

COVID-19 – guidance on clinically extremely vulnerable children and young people updated 12/03/2021


CLINICIAN RISK GRID FOR COVID-19 RISK AND RARE DISEASE
Updated 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 

New Clinician Risk Grid for Covid19 risk and Rare disease (updated 29/05/2020)

COVID-19 Risk Assessment for Patients with a Rare Disease

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

COVID-19 (Coronavirus) Resources and Info for Uveitis Patients – Where to find support and guidance


GOVERNMENT ADVICE
Updated 12/04/2021

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:
UK Government (England)
Welsh Government
Scottish Government
Northern Ireland Executive


NHS ADVICE
Updated 05/01/2021

Advice for everyone can be found here including how long to self-isolate and how to get tested.  You need to get the test done in the first 5 days of having symptoms.

Get the latest NHS information and advice about coronavirus (COVID-19)

GUIDANCE ON VITAMIN D
Updated 03/02/2021

It’s important to take vitamin D if you have been indoors more than usual this year. Please see the link below, and where appropriate consider the advice.

NHS Vitamin D (updated 03/02/2021)

YOUR COVID RECOVERY
Updated 02/11/2020

If you are recovering from COVID-19 you may still be coming to terms with the impact the virus has had on both your body and mind.

Your COVID Recovery helps you to understand what has happened and what you might expect as part of your recovery.

Your COVID Recovery


EMPLOYMENT & FINANCE
Updated 12/04/2021

Guidelines are available on the government sites (see GOVERNMENT ADVICE section above)

ACAS
Updated 29/03/2021

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)

Coronavirus: shielding and vulnerable people (updated 29/03/2021)

BEHÇET’S UK EMPLOYERS GUIDE
Updated 07/08/2020

You may find our guide useful to send to your Employer and covers guidelines such as disability discrimination, your employer’s duty to make reasonable adjustments and highlights schemes such as Access to Work which could help with additional costs beyond this expected under reasonable adjustments.

Behçet’s UK Employers Guide

HEALTH & SAFETY EXECUTIVE: COVID-SECURE WORKPLACE
Updated 31/03/2021

Details of how a COVID-secure workplace should look can be found here

Making your workplace COVID-secure during the coronavirus pandemic (reviewed 31/03/2021)

BRITISH STANDARDS INSTITUTE (BSI)
Updated 05/01/2021

The 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 a Vulnerable People category.

BSI Guidelines (updated 31/12/2020)

CITIZENS ADVICE BUREAU (CAB)
Updated 24/06/2020

CAB have provided a lot of useful information for those affected financially due to coronavirus.

Citizens Advice: Check what benefits you can get (Ensure you select the country you live in).

Citizens Advice: If you can’t pay your bills because of Coronavirus (Ensure you select the country you live in).

BENEFITS AND WORK
Updated 30/03/2021

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

Benefits and Work: Coronavirus updates (updated 30/03/2021)

ADVICE FOR THE SELF EMPLOYED
Updated 12/04/2021

Specific advice for the self-employed can be found here: 

What to do if you’re self employed and getting less or no work (updated 12/04/2021)

EXCLUDEUK
Updated 07/08/2020

ExcludedUK is a newly formed non-profit that serves as a collective platform for those entirely or largely excluded from the UK Government’s Covid-19 financial support measures. They aim to provide a platform for peer-to-peer support, practical advice, and suggestions.    

ExcludedUK

OFGEM – SUPPORT WITH ENERGY BILLS
Updated 07/08/2020

Ofgem are offering advice if you need support to pay you gas or electricity bills. This includes help with pre-payment meters, reviewing payment plans, and information on hardship funds that might be available from your provider.

Ofgem: Coronavirus and your energy supply

You can also call them on 0207 901 7000

BEHÇET’S UK PERSONAL GRANT AID FUND
Updated 21/07/2020

The aim of the Personal Grant Aid Fund is to improve the quality of life, independence, mobility and dignity of anyone who has Behçet’s where their illness is causing financial difficulty. If you are diagnosed with Behçet’s, resident in the UK, and are a member of Behçet’s UK (formerly Behçet’s Syndrome Society), for at least six months, you may be eligible for a grant. Contact us via info@behcetsuk.org for more information.

TURN2US GRANT SEARCH
Updated 21/07/2020

Many other charities offer non-repayable grants to help individuals on low incomes, the Turn2Us search tool will help find grants available.

Turn2Us grant search

SCOTTISH WELFARE FUND
Updated 05/02/2021

This fund is available to people in crisis and in need of financial support in Scotland

Scottish Welfare Fund – Crisis grants


MENTAL HEALTH AND WELL-BEING
Updated 18/02/2021

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.

Behçet’s Patient Support: COVID-19 information (updated 18/02/2021)

In addition, we have some tips for managing anxiety and information on our Behçet’s UK peer to peer support.

Tips for Behçet’s patients to manage anxiety whilst at home during the Cornonavirus outbreak

Behçet’s UK  peer to peer support


ASSISTING WITH COVID EVIDENCE GATHERING
Updated 18/02/2021

INTERNATIONAL SOCIETY FOR BEHÇET’S DISEASE (ISBD
Updated 18/02/2021

Behçet’s UK are helping the ISBD accumulate much-needed stories for developing its experience page.

Summary: ISBD webinar on COVID-19 22nd Jan 2021

Behçet’s and COVID-19 management advice for clinicians: Suggestions for counselling Behçet’s patients and their families with questions concerning COVID 19

Clinical experience of BD and COVID-19 (updated 08/12/2020)

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 info@behcetsuk.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 COVID-19 EUROPEAN PATIENT REGISTRY
Updated 05/01/2021

The COVID-19 European Patient Registry,  Part of the Global Rheumatology Alliance, is not currently recruiting new participants however you can view information about the study on their website.

Results from the COVID-19 European Patient Registry – so far (updated 03/01/2021)

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

COVID-19 trials


ADDITIONAL ADVICE FOR THOSE ON THE SHIELDING REGISTER
Updated 12/04/2021

There are two ways an individual may be on the shielding register:

  1. if you have one or more of the conditions listed on the government website, (combined potentially with medication you are on) or
  2. a hospital clinician or GP has added you to the Shielded Patients list because, based on their clinical judgement, they deem you to be at higher risk of serious illness from COVID-19 infection.

Full guidance on protecting people defined on medical grounds as clinically 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).

SUPPORT FOR VULNERABLE PEOPLE (RVS)
Updated 07/08/2020

The Royal Voluntary Service (RVS) is one of the key services you can access if you are vulnerable and need support. They will continue to offer support until at least December 2020. 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.

Find out more about RVS and if you qualify for support

ENGLAND
Updated 12/04/2021

In England, the advice to shield ended on 1 April 2021 and all clinically extremely vulnerable people are advised to follow the coronavirus restrictions in place.

Everyone is currently advised to work from home where possible. If you cannot work from home, we are no longer advising that you do not attend the workplace. Your employer is required to take steps to reduce the risk of exposure to COVID-19 in the workplace and should be able to explain to you the measures they have put in place to keep you safe at work. From 1 April you will no longer be eligible for Statutory Sick Pay (SSP) or Employment and Support Allowance (ESA) on the basis of being advised to shield.

Clinically extremely vulnerable pupils and students should return to their school or other educational setting from 1 April.

COVID-19: guidance on shielding and protecting people defined on medical grounds as extremely vulnerable (updated 12/04/2021)

SCOTLAND
Updated 12/04/2021

Mainland Scotland and some islands are at Level 4 with guidance to stay local. Some islands are at Level 3. These levels are expected to remain in place until 26 April 2021.

If you are on the shielding list, the advice is that you should not go to work if you live or work in a Level 4 area, unless you can work from home. This applies even if you have had a coronavirus vaccine. 

The Chief Medical Officer has sent you a letter which is similar to a fit note. It will last until 30 June 2021. You can use it while your area or workplace is in level 4. Use this letter to stay off work if you cannot work from home. If you need your shielding notification letter from the Chief Medical Officer but no longer have it, call the National Assistance Helpline on 0800 111 4000 (Monday – Friday, office hours).

Children on the shielding list should not attend in person if they live or attend school, college, or formal childcare in a level 4 area. However, a child’s clinician may advise that an individualised risk assessment can be undertaken.

Students who are on the shielding list are also advised not to attend college or university in person. 

Coronavirus (COVID-19): shielding advice and support (updated 02/04/2021)

Coronavirus – support if you’re on the shielding list (updated 01/04/2021)

HPS COVID-19 – search criteria for highest risk patients for shielding (updated 19/02/2021) sets out details of the groups considered to be at the highest risk should they contract Covid-19 and includes how the patients were identified and the codes used to identify them.

WALES
Updated 12/04/2021

In Wales, the advice to shield ended on 1 April 2021. This means you can now go to work, if you cannot work from home, as long as the business is Covid-secure, and children who have been following shielding measures can return to school when appropriate for their year group.

People on the shielding patient list must still follow the same rules as the rest of the population in Wales, but are also advised to take extra precautions to keep themselves safe from coronavirus.

Guidance on protecting people defined on medical grounds as clinically extremely vulnerable from coronavirus (COVID-19) – previously known as ‘shielding’ (updated 01/04/2021)

Getting food and essential supplies during the coronavirus pandemic (updated 01/04/2021)

NORTHERN IRELAND
Updated 12/04/2021

From 12 April, clinically extremely vulnerable (CEV) people should continue to work from home where this is possible. If it is not possible, you can attend your workplace, provided your employer has taken the proper measures to ensure social distancing in your place of work, and you can travel to work in a way which allows for social distancing.

Pupils previously shielding or with a family member who was previously shielding due to being identified as CEV can continue to go to school. A small number of children will be advised by their clinical team not to attend an educational setting. The vast majority of these children would routinely be advised not to attend school even outside pandemic period due to the risk of infections other than COVID-19.

Coronavirus (COVID-19):  guidance for ‘clinically extremely vulnerable’ and ‘vulnerable’ people


TIPS FOR STAYING SAFE
Updated 07/08/2020

Before leaving your home, plan how you will keep safe and minimise risk by considering:

  • taking an alcohol-based hand rub (hand sanitiser) with you
  • taking tissues and a separate bag to keep used tissues
  • taking a face covering
  • choosing times and areas that are quiet

There are ways to lower your risk of exposure to the virus as you start doing more activities outside your home. When outdoors, as much as possible, try to:

  • stay at 2 least metres away from other people – except from those you live with or are in your extended household group
  • wear a face covering inside shops and on public transport, unless you are exempt
  • avoid touching hard surfaces with your hands – such as door handles, gates, seats and tables
  • use a hand sanitiser regularly, especially before eating or after touching hard surfaces
  • wash your hands for at least 20 seconds as soon as you get home

To stay safe in shops, try to:

  • choose quieter time to avoid queues
  • reducing the number of trips by doing one big shop
  • put on your face covering before touching a trolley or basket
  • wipe the handles of any baskets or trolleys before use
  • use contactless payment if possible
  • use self-checkout or self-scan if you can – this will mean that it’s only you who is touching your items