Coronavirus (COVID-19)

UPDATED 15/09/2021 (all links and quotes checked 22/07/2021)
We will continue to monitor and update this page as information and clinical evidence becomes available.

Behçet’s UK is not able 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.

However, we know, patients with Behçet’s are always careful with regard to secondary infection and we advise you to continue to take appropriate precautions; COVID-19 has not gone away and new variants will continue to emerge, particularly as restrictions are relaxed.

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 15/09/2021
MEDICATION Updated 12/04/2021
CLINICALLY VULNERABLE Updated 22/07/21
CLINICALLY EXTREMELY VULNERABLE Updated 22/07/2021
BRITISH SOCIETY FOR RHEUMATOLOGISTS Updated 22/07/2021
BRITISH ASSOCIATION OF DERMATOLOGISTS Updated 22/07/21
ASSOCIATION OF BRITISH NEUROLOGIST
ROYAL COLLEGE OF PAEDIATRICS AND CHILD HEALTH Updated 22/07/2021
CLINICIAN RISK GRID FOR COVID-19 Updated 22/07/2021
UVEITIS / OCULAR INFLAMMATION
GOVERNMENT ADVICE Updated 22/07/2021
NHS ADVICE
EMPLOYMENT & FINANCE Updated 22/07/2021
MENTAL HEALTH AND WELL-BEING
ASSISTING WITH COVID EVIDENCE GATHERING
ADDITIONAL ADVICE FOR THOSE SHIELDING Updated 22/07/2021
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

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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

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GUIDANCE FOR ADULT BEHÇET’S PATIENTS
Updated 15/09/2021

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 formal statements for all other vaccines.

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.

THIRD COVID VACCINE DOSE updated 15/09/21

At the current time (01/09/21), JCVI advises that a third primary dose be offered to individuals aged 12 years and over with severe immunosuppression in proximity of their first or second COVID-19 vaccine doses in the primary schedule.

Joint Committee on Vaccination and Immunisation (JCVI) advice on third primary dose COVID-19 vaccination for people who are immunosuppressed

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 

CHILDREN
Updated 15/09/2021

JCVI statement, September 2021: COVID-19 vaccination of children aged 12 to 15 years

VACCINE ROLLOUT PROGRAMME
Updated 07/04/2021

All adults (18 and over) in all four UK nations have now been invited for their vaccine. 

Use the following links to view the current vaccine rollout programme for your nation and how to make an appointment if you haven’t been called.

England
Scotland
Northern Ireland
Wales

Public Health England – Vaccination guide for adults (updated 14/06/2021)

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

View current regulatory approval for all COVID vaccines here

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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.

Treatments for coronavirus (COVID-19)

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

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

Previous government guidelines for clinically vulnerable people who could be at higher risk of severe illness from coronavirus (COVID-19) emphasised the need to be particularly stringent in following social/physical distancing measures.

Behçet’s UK would advise this is a sensible precaution to follow now.

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.

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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 have now paused shielding.  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 22/07/2021

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

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BSR guidance on COVID-19 (updated 22/07/2021)

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COVID-19: Provisional Guidance on Vaccination (updated 04/06/2021)

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

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

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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 15/04/2021

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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.

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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

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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

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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 03/08/2020)

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

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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.

Vulnerable people and at high risk from COVID-19 (updated 19/07/2021)

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 19/07/2021

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

Making your workplace COVID-secure during the coronavirus pandemic (reviewed 19/07/2021)

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 22/07/2021

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 20/05/2021)

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

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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

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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

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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 22/07/2021

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.

COVID-19: guidance on shielding and protecting people defined on medical grounds as extremely vulnerable (updated 21/07/2021)

SCOTLAND
Updated 12/04/2021

From 19 July the whole of Scotland is at alert Level 0 which means those on the shielding list are being asked to follow the same advice as for the rest if the population.

Coronavirus (COVID-19): shielding advice and support (updated 19/07/2021)

Coronavirus – support if you’re on the shielding list (updated 19/07/2021)

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 22/07/2021

In Wales, the advice to shield ended on 1 April 2021

Guidance on protecting people defined on medical grounds as clinically extremely vulnerable from coronavirus (COVID-19) – previously known as ‘shielding’ (updated11/06/2021)

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

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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

 

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