The Birmingham and Liverpool Behçet’s Centres consider that having a diagnosis of Behçet’s does not automatically mean that you are Clinically Extremely Vulnerable and at very high risk of severe illness if you catch coronavirus (COVID 19)
We recommend that patients and their doctors follow the guidance issued by the British Society for Rheumatology (BSR) to assess individual risk. In summary, Behçet’s Disease is not in itself thought to be an indication for shielding or being defined as Clinically Extremely Vulnerable (CEV). The BSR risk stratification guide https://www.rheumatology.org.uk/(COVID 19 – identifying patients for shielding) has guided the selection of patients to be shielded (CEV). This takes into account disease activity, combinations of immunosuppressive medications (see below) and corticosteroid medications (regular steroids above 5 mg daily) and the presence of other factors such as
- age >70
- pre-existing lung disease
- kidney problems (renal impairment)
- Heart problems (angina, ischaemic heart disease)
- High blood pressure (hypertension)
- Pulmonary hypertension
- Stem cell transplant)
According to the latest Government guidance, adults on immunosuppression therapies sufficient to significantly increase risk of infection are considered clinically extremely vulnerable (CEV).
CEV people will have received a letter from the NHS and/or their GP explaining what this means for them. During this second lockdown, they will also (if they haven’t already) receive a further letter explaining the new guidance.
CEV people are being asked to stay at home as much as possible, but current shielding measures in England are not currently as stringent as previous shielding guidance. Individuals classed as CEV should be encouraged to continue to seek support from the NHS and other health services for their existing health conditions and any new concerns. This means CEV people may continue to receive in-person care if needed
A list of immunosuppressive medications Behçet’s patients may be taking that are of relevance in COVID risk assessment according to BSR guidance
- Oral tacrolimus
- Regular Steroids above 5mg/day
- Rituximab within last 24 months
SHIELDING ADVICE FOR PEOPLE IDENTIFIED AS AT A VERY HIGH RISK OF SEVERE ILLNESS or CEV
People who are defined as clinically extremely vulnerable (CEV) are at very high risk of severe illness from coronavirus (COVID-19). This is because of the combination of treatments and disease which means if you catch the virus, you are more likely to be admitted to hospital than others.
The safest course of action is for you to stay at home at all times and avoid all face-to-face contact for at least twelve weeks from today, except from carers and healthcare workers who you must see as part of your medical care. This is called “shielding” and will protect you by stopping you from coming into contact with the virus.
If you are in touch with friends, family or a support network in your community who can support you to get food and medicine, follow the advice in this letter. If you do not have contacts who can help support you go to www.gov.uk/coronavirus-extremely-vulnerable or call 0800 0288327, the Government’s dedicated helpline.
The person with Behçet’s who is Clinically Extremely Vulnerable should
- strictly avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature (above 37.8 °C) and/or a new and continuous cough
- not leave your home (except for emergency medical care/ planned blood tests)
- not attend any gatherings. This includes gatherings of friends and families in private spaces e.g. family homes, weddings and religious services
- not go out for shopping, leisure or travel. When arranging food or medication deliveries, these should be left at the door to minimise contact
- keep in touch using remote technology such as phone, internet, and social media
- use telephone or online services to contact your GP or other essential services
- regularly wash your hands with soap and warm water for 20 seconds. Ask carers or support workers who visit your home to do the same.
The rest of your household should support you to stay safe and stringently follow guidance on social distancing, reducing their contact outside the home. In your home, you should:
- minimise the time you spend with others in shared spaces (kitchen, bathroom and sitting areas) and keep shared spaces well ventilated
- aim to keep 2 metres (3 steps) away from others and encourage them to sleep in a different bed where possible
- use separate towels and, if possible, use a separate bathroom from the rest of the household, or clean the bathroom after every use
- avoid using the kitchen when others are present, take your meals back to your room to eat where possible, and ensure all kitchenware is cleaned thoroughly.
The rest of the household can continue contact with each other as normal
You will still get the medical care you need during this period. We are considering alternative options for managing your care and will be in touch if any changes are needed. Your hospital care team will be doing the same.
We also advise that:
1. Carers and support workers who come to your home
Any essential carers or visitors who support you with your everyday needs can continue to visit, unless they have any of the symptoms of coronavirus. All visitors should wash their hands with soap and warm water for 20 seconds, on arrival and often whilst in your home and when leaving. Surfaces should also be wiped down.
It is also a good idea to speak to your carers about what happens if one of them becomes unwell. If you need help with care but you’re not sure who to contact please visit www.gov.uk/coronavirus-extremely-vulnerable.
2. Medicines that you routinely take
The government is helping pharmacies to deliver prescriptions. Prescriptions will continue to cover the same length of time as usual. If you do not currently have your prescriptions collected or delivered, you can arrange this by:
- Asking someone who can pick up your prescription from the local pharmacy, (this is the best option, if possible);
2. Contacting your pharmacy to ask them to help you find a volunteer (who will have been ID checked) or deliver it to you.
3. Support with daily living
Please discuss your daily needs during this period of staying at home with carers, family, friends, neighbours or local community groups to see how they can support you. If you do not have anyone who can help, please visit www.gov.uk/coronavirus-extremely-vulnerable.
You should not work outside the home.
Your employer may be able to help you work from home if this is appropriate. The letter you have received is evidence, for your employer, to show that you cannot work outside the home. You do not need to get a fit note from your GP. If you need help from the benefit system visit https://www.gov.uk/universal-credit.
VACCINATION ADVICE Pfizer/BioNTech and Oxford University/AstraZeneca COVID-19 vaccines
So far, three COVID-19 vaccines have been approved for use in the UK – the Pfizer/BioNTech vaccine, the Oxford AstraZeneca vaccine and the Moderna vaccine. The Moderna vaccine isn’t expected to be available in the UK until spring 2021 so is not covered in this guidance.
All Behçet’s patients are encouraged to take the vaccine when offered.
The current national guidance is that the vaccine can be received irrespective of autoimmune condition or treatment (EXCEPT pregnant women and those under 16 years of age). However, its effectiveness might be reduced as a result of your treatment.
There’s no evidence the COVID-19 vaccine is unsafe if you’re pregnant. But more evidence is needed before you can be routinely offered the vaccine.
The JCVI has updated its advice to recommend you may be able to have the vaccine if you’re pregnant and:
- at high risk of getting coronavirus because of where you work
- have a health condition that means you’re at high risk of serious complications of coronavirus
You can have the COVID-19 vaccine if you’re breastfeeding.
The only clinical reason to refuse the vaccine would be if you have had an anaphylactic allergic response to the vaccine or any of its components previously.
The Joint Committee on Vaccination and Immunisation (JCVI) guidelines recommend that the vaccine be distributed to the priority groups in the order below:
- residents in a care home for older adults; staff working in care homes for older adults
- all those 80 years of age and over; frontline health and social care workers
- all those 75 years of age and over
- all those 70 years of age and over, CEV individuals (not including pregnant women and those under 16 years of age)
- all those 65 years of age and over
- adults aged 16-65 years who are in an at-risk group
- all those 60 years of age and over
- all those 55 years of age and over
- all those 50 years of age and over
Patients who are considered Clinically Extremely Vulnerable (CEV) should be aware of this status from previous shielding notification letters and will have been advised to ‘shield’ previously. They will be vaccinated in Group 4 or according to age if this is in a higher Group. Otherwise patients with autoimmune conditions will fall into Group 6. The timing of the vaccination of each Group is currently determined nationally and according to resources. You will be contacted when a COVID vaccination appointment is available according to your priority group. We therefore encourage patients in lower priority groups to be patient whilst those in earlier groups are vaccinated.
British Society for Rheumatology COVID-19 guidance (https://www.rheumatology.org.uk/practice-quality/covid-19-guidance)