Key messages:
- Patients on immunosuppressive therapies are at increased risk from COVID 19 infection and need to take extra precautions to protect themselves.
- Those living in the household of individuals who are immunosuppressed or who have other higher risk conditions (aged > 60-70yrs, lung or heart disease, diabetes mellitus, full and see list below) need to take extra precautions to protect vulnerable household members.
- If you are in a higher risk group of COVID 19 you are advised to stay at home, now for at least 12-weeks, following government advice. Please follow government updates.
- If you become unwell with infection symptoms, DO NOT stop your steroids (prednisolone) but do stop your other immunosuppressive therapy and any NSAIDs (ibuprofen) and seek medical advice as below.
- Do not stop your medications unless you are unwell with infection symptoms or have other side-effects that you need to discuss with your GP or specialist.
- Where to get further advice is detailed below.
It is important for you and your household to continue regular thorough hand washing with soap and water and use alcohol-based hand-gel when you cannot wash your hands with soap and water.
If, at any point, you think you have developed symptoms of coronavirus, such as a new, continuous cough and/or high temperature (above 37.8 °C), seek clinical advice using the NHS 111 online coronavirus service (https://111.nhs.uk/covid-19/). If you do not have access to the internet, call NHS 111. Do this as soon as you get symptoms.
The safety and continued provision of care and treatment is a priority for the NHS. This letter gives you advice on how to protect yourself and access the care and treatment you need.
Am I at specific risk as I am on immunosuppressant medication for my rheumatological condition?
You would be considered higher risk of coronavirus if you are in a group of patients who would normally be recommended to have an annual seasonal flu vaccine, as similar risks apply.
Being on some medications, particularly steroids, cyclophosphamide and/or biologics (such as etanercept / adalimumab / tocilizumab / abatacept / infliximab / rituximab / ustikinumab / secukinumab) and JAK inhibitors (such as baricitinib / toficitinib) does cause a greater amount of immunosuppression and therefore, is considered to increase risk from COVID 19 infection. Patients on other immunosuppressive therapies such as methotrexate / azathioprine / mycophenolate mofetil / leflunomide / sulphasalazine / tacrolimus / penicillamine are also at higher risk, particularly if you are on a combination of therapies or on steroids (prednisolone) in combination with your other immunosuppressive therapy, or if there are additional risk factors such as older age (individuals over 60-70 years), heart or lung disease, or diabetes mellitus.
What should I do if I am in the higher risk group on immunosuppressive therapies or have other conditions that might increase my risk of COVID 19?
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 immediately, except from carers and healthcare workers who you must see as part of your medical care. This will protect you by minimising your risk from coming into contact with the virus.
What if I am an essential worker?
Please liaise with your employer who should review your work and make adjustments to minimise your exposure risk. Please liaise with your rheumatology team, if you need further individual information.
Should I stop taking the medications?
No. Current advice is to continue taking all medications as prescribed unless you think you may have COVID-19. Stopping may cause a flare of disease requiring more intensive treatment. Contact your rheumatology team if you are currently on steroids for possible dose adjustment. Do not suddenly stop your steroids as this could cause serious illness. If you are already taking NSAIDs (Ibuprofen, naproxen, diclofenac, piroxicam, meloxicam) and require them to control your symptoms, you can continue using them.
If I think I may have been in contact with someone with COVID-19, what do I do?
If you believe you or a member of your family whom you live with has been in contact with someone tested positive or symptomatic, check the website for latest advice
https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public , self-isolate and contact the rheumatology department in case you need any changes to your medication.
If you become symptomatic, stop your immunosuppressive medication EXCEPT for steroids and contact NHS 111 as soon as you develop symptoms for further advice. The rheumatology department may be able to offer further advice on your medication.
If I think I may have COVID-19 - what should I do?
If, at any point, you think you have developed symptoms of coronavirus, such as a new, continuous cough and/or high temperature (above 37.8 °C), seek clinical advice using the NHS 111 online coronavirus service (https://111.nhs.uk/covid-19/). If you do not have access to the internet, call NHS 111. Do this as soon as you get symptoms.
If you have symptoms to suggest Coronavirus, stop your immunosuppressive medication EXCEPT for steroids. Contact your rheumatology centre by phone or email to update them and for further advice on your medication.
If your symptoms are getting worse, contact NHS 111 / NHS 24 and follow their advice and that on the website.
Once you have recovered from your symptoms please contact the rheumatology department for advice on restarting medication.
Keep up to date
You should follow the advice given by the Government and on the NHS website. https://www.nhs.uk/conditions/coronavirus-covid-19/
Rheumatology updates can also be accessed from the British Society for Rheumatology
www.rheumatology.org.uk
What support do I have?
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.
If, at any point, you think you have developed symptoms of coronavirus, such as a new, continuous cough and/or high temperature (above 37.8 °C), seek clinical advice using the NHS 111 online coronavirus service (https://111.nhs.uk/covid-19/). If you do not have access to the internet, call NHS 111. Do this as soon as you get symptoms.
You, or the person you care for, 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
• 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 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.
If the rest of your household are able to follow this guidance, there is no need for them to take the full protective measures to keep you safe.
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 water for 20 seconds, on arrival and often.
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:
1. 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.
You may also need to arrange for collection or delivery of hospital specialist medication that is prescribed to you by your hospital care team.
3. Planned GP practice appointments
Wherever possible, we will provide care by phone, email or online. But if we decide you need to be seen in person, we will contact you to arrange your visit to the surgery or a visit in your home.
4. Planned hospital appointments
NHS England have written to your hospital to ask them to review any ongoing care that you have with them. It is possible that some clinics and appointments will be cancelled or postponed. Your hospital or clinic will contact you if any changes need to be made to your care or treatment. Otherwise you should assume your care or treatment is taking place as planned. Please contact your hospital or clinic directly if you have any questions about a specific appointment.
5. 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 you, please visit www.gov.uk/coronavirus-extremely-vulnerable.
This letter 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
6. Urgent medical attention
If you have an urgent medical question relating to your existing medical condition, or the condition of the person you are caring for please contact your GP, or your specialist hospital care team, directly.
Northampton General Hospital helpline
ngh-tr.rheumatology.helpline@nhs.net (please use e-mail if possible)
Or telephone number 01604-544060 selecting option 2.
Where possible, you will be supported by phone or online. If your clinician decides you need to be seen in person, the NHS will contact you to arrange a visit in your home, or where necessary, treatment in hospital.
To help the NHS provide you with the best care if you need to go to hospital as a result of catching coronavirus, we ask that you prepare a single hospital bag. This should include your emergency contact, a list of the medications you take (including dose and frequency), any information on your planned care appointments and things you would need for an overnight stay (snacks, pyjamas, toothbrush, medication etc). If you have an advanced care plan, please include that.
7. Looking after your mental well-being
We understand that this may be a worrying time and you may find staying at home and having limited contact frustrating. At times like these, it can be easy to fall into 4
unhealthy patterns of behaviour, which can make you feel worse. Simple things you can do to stay mentally and physically active during this time include:
• look for ideas for exercises to do at home on the NHS website
• spend time doing things you enjoy – reading, cooking and other indoor hobbies
• try to eat healthy, well-balanced meals, drink enough water, exercise regularly, and try to avoid smoking, alcohol and recreational drugs
• try spending time with the windows open to let in fresh air, arranging space to sit and see a nice view (if possible) and get some natural sunlight. Get out into the garden or sit on your doorstep if you can, keeping a distance of at least 2 metres from others.
You can find additional advice and support from Every Mind Matters and the NHS mental health and wellbeing advice website.
Further information on coronavirus, including guidance from Public Health England, can be found on the nhs.uk1 and gov.uk2 websites.
1 https://www.nhs.uk/conditions/coronavirus-covid-19/
2 https://www.gov.uk/coronavirus
List of diseases and conditions considered to be very high risk:
1. Solid organ transplant recipients
2. People with specific cancers
• People with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer
• People with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
• People having immunotherapy or other continuing antibody treatments for cancer
• People having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
• People who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs
3. People with severe respiratory conditions including all cystic fibrosis, interstitial lung disease, severe asthma, and severe COPD
4. People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell)
5. People on immunosuppression therapies sufficient to significantly increase risk of infection
6. People who are pregnant with significant heart disease, congenital or acquired