Information for adults and parents of children
UK Uveitis Clinical Study Group Guidance for Treatment of uveitis and other inflammatory diseases of the eye during the COVID-19 pandemic
Click here to return to the main COVID19 Hub for Patient Resources
Updated 1 June 2020
This updated document contains answers to the most frequently asked questions from inflammatory eye disease patients during the COVID-19 pandemic. This guidance has been created by the UCSG in partnership with consultant rheumatologists and paediatric rheumatologists, in order to provide a unified cross-disciplinary response. Patients have contributed extensively.
We have updated this guidance based on changes to hospital eye services and the latest updates including the new extremely clinically vulnerable category, the end of shielding on June 30th and new shielding guidance. Just scroll down and find a question that applies to you. If you want to watch a patient information / support webinar, ask for details on firstname.lastname@example.org or see the covid hub where we will advertise this prior to the webcast. The webinars are currently occurring every month during COVID-19. We also have a short video about how hospitals are changing , a youtube patient support video and NHS FAQs. If you wish to be part of a patient group attached to Uveitis Study Group, please email email@example.com
Trusted sources of information are listed at the end of the document.
1. How do I know if I have COVID-19?
The symptoms are:
- Fever - temperature above 37.8°C
- New cough
- Muscle aches
- Sore throat
- Breathing difficulties
- Loss of taste or smell
2. What should I do if I/ my child are showing symptoms suggestive of COVID 19?
If you are showing any symptoms and you think you might have coronavirus or you've been in close contact with someone who has it:
- Stay at home for seven days if you live alone
- Advice for household members living with someone who has symptoms of coronavirus is here
- Avoid close contact with other people
- Do not go to a GP surgery, pharmacy or hospital
- Check the online 111 coronavirus service to find out what to do next
- Only call 111 if you are unable to get help online
- Have a list of your medicines and doses ready to pass on to the 111 service
3. Do I continue my uveitis medicines if I think I have COVID-19?
You should continue on your current medications unless your clinical team ask you to make any changes. If you develop an infection – whether COVID-19 or any other infection – you may be advised to temporarily pause one or more of your immunosuppressants. However, it is very important that you continue any steroids (eg prednisolone) you are taking. Stopping steroids suddenly is dangerous for your general health, and can make you very sick. Any reduction in steroids should be planned in consultation with your doctor. You may be asked to increase your steroid dose if you develop an infection while on long-term prednisolone.
4. Are hospital appointments going to be given as normal?
Hospitals are changing in response to COVID-19. These changes were already evolving over recent years but COVID-19 has certainly accelerated them.
Many clinics will have information on their website or will be sending a letter to advise you what to expect. Some basic principles will apply everywhere. We still need to maintain 2 metres distancing from people or groups who are not part of our household, in order to keep everyone as safe as possible. This means that some appointments will be in a different format, although there will be times when there is a medical need for a health professional to come closer to you. Your case records or referral letter have been reviewed by your own/ your child's uveitis team and they will initially allocate any of the following appointment type depending on where the inflammation is in your eye and how severe your condition is but it is also possible to discuss these options with your team:
- A telephone/ video call
- A visit to the hospital or an optometrist to have photographs taken of your eyes, which will be followed by a telephone/video call. This tends to be a short visit
- A face-to-face appointment. You have to come to hospital for this.
5. If I / my child have a hospital clinic appointment, will it be the same as usual?
There are certainly some obvious differences during COVID-19 pandemic which you will notice. For instance, waiting areas have been rearranged to maintain a 2 metre distance between yourself and others. Staff will be wearing personal protective equipment (PPE). In some clinics, if there are too many people in the outpatients area, you might be asked to wait outside the clinic area.
Here is some general information but do check your hospital's website for more information.
- If you usually have dilating drops, then you may still need them when you come to the eye hospital.
- Do not arrive more than 15 minutes before your appointment
- Carers and drivers may be asked to wait outside, or in the car.
- Please bring your mobile phone, if you have one.
- Some units may suggest that patients use an app on their smartphones to check their vision at home before their appointment. This could be helpful but you should not be worried if you cannot do this.
- If you are feeling unwell, cancel your appointment, stay at home and check NHS 111 online for advice.
6. What do I do if a hospital appointment has been cancelled but I'm getting a flare of my uveitis?
The hospital eye services are open to see or give advice to patients having a flare of uveitis. You should call your usual emergency contact number and seek advice. This might be your eye emergency department, your consultant's secretary, or a dedicated uveitis hot-line. It may be that adequate advice can be given over the phone without your needing a hospital appointment.
7. I'm a young person/ I'm a parent of a child who does not get any symptoms of uveitis.
Children and young people don't often have symptoms of uveitis and you don't need to have a flare to be seen. Doctors looking after children and young children with uveitis will arrange an appointment as soon as possible. You should expect an appointment if your child has a new diagnosis of juvenile idiopathic arthritis (JIA), if they have unstable uveitis (which means that they have recently needed an increase in treatment), or if they have an eye pressure problem (glaucoma).
8. Am I/ my child at more risk of COVID-19 than other people?
At present, we are acting on the assumption that patients on immunosuppression including oral steroids are at higher risk of getting infections or having a worse outcome if they get an infection. As the evidence is updated, we will know to what extent this is true although there has not been any clear evidence that this is the case so far. The level of risk or ‘vulnerability' to infections affect the social distancing measures which are right for you.
Children do contract coronavirus but have mild or no symptoms and are likely to be at less risk while on immunosuppression than adults. You can find some more advice about children on immunosuppression treatment for inflammatory eye disease at: https://www.ccaa.org.uk/coronavirus-support-resources/.
9. High risk and vulnerable patients- what does this mean?
So far during the pandemic, this society and many others have given guidance to doctors to help classify patients into high and lower risk groups based on several factors including the types and amounts of immunosuppressive treatments they are on, steroid treatment and other risk factors like high blood pressure or obesity. See what risk group you are in here. The terminology for those at ‘high risk' is now changing to ‘clinically extremely vulnerable' if they were to contract COVID 19 infection.
- Clinically extremely vulnerable: These are people who could be especially vulnerable to a worse infection if they got COVID-19 and are currently being asked to shield until 30th June,for example those on 20mg of prednisolone or greater for more than 4 weeks
- Clinically extremely vulnerable children: Children on >0.5mg/kg or ≥20mg for more than 4 weeks fall in this group. Therefore, very few children on immunosuppression will be in this group and you may wish to speak about this with your child's doctor as some schools are re-opening to some groups of children. Shielding advice for children is here.
- Moderate risk : You are not in the clinically extremely vulnerable group and you may follow government guidance on safe social distancing or stay at home at your discretion. This applies to patients on one form of immunosuppressive medication.
- Low risk : If you are on no immunosuppressants, are on hydroxychloroquine, sulfasalazine, and are on no prednisolone, or if you have a steroid implant in your eye like Ozurdex or Iluvien and are also on no other immunosuppressant treatment, you are at no increased risk compared with the general population. You should follow government guidance on safe social distancing.
10. How has shielding advice changed?
Shielding is intended to protect the highest risk or clinically extremely vulnerable adults and children from contracting COVID-19 infection. Shielding is group of measures designed to protect people at greatest risk from contracting COVID-19. What it means to shield has now changed and we have underlined the differences now to previous guidance.
- You can now leave your home if you wish, as long as you are able to maintain strict social distancing.
- If you choose to spend time outdoors, this can be with members of your own household.
- If you live alone, you can spend time outdoors with one person from another household. The government advises that this should be the same person each time, but always staying 2m apart.
- Stay 2 metres apart. This guidance will be kept under regular review.
- You should work from home if you are shielding
- Living with other people: You will still have to minimise sharing of household facilities e.g. bathrooms, sittings areas and stay 2 metres (3 steps) away from people you live with. Keep spaces well ventilated. Further advice is in the living with other people section here
- If you wish to shield as before, you may
- If you are not in the extremely clinically vulnerable group and wish to shield, speak about this with your doctor to weight up the pros and cons of this decision. This will ultimately be your decision to make.You may continue to work from home if your work can be done this way and you would like to do this.
11. I / my child are in the clinically extremely vulnerable group- is shielding ending on June 30th?
At present, NHSE has informed clinicians that shielding is to end on June 30th. You should arrange to speak with your doctor about your specific circumstances before June 30th. If they agree that you are in a clinically extremely vulnerable group, you could be asked to shield for a further period of time. Part of the decision will be based on the level of coronavirus transmission closer to the time and government advice may also be updated.
12. If I / my child need to start immunosuppressants for my uveitis, is that safe?
It is likely that social distancing is going to continue for several months. It may be recommended that you start treatment with immunosuppressants during this time. In these cases your doctor will discuss with you the pros and cons of starting treatment now. So far, there have been no publications which have shown that patients do worse if they are on immunosuppression. This may be linked to carrying out effective social distancing.
13. I / my child used to be on immunosuppressants. Am I / they in the clinically extremely vulnerable group?
If you or your child stopped immunosuppressant medications more than three months ago and you or your child are not included in the risk group of clinically extremely vulnerable people, then it is likely that the risk to you or your child of getting COVID-19 is the same as for the general population. There are some exceptions to this where the medication has a longer effect such as cyclophosphamide or rituximab. These two medications usually clear from your body after 6 months from the last dose.
14. I am on immunosuppression treatment, Should I be shielding from my child if they go to school?
Children who have COVID-19 in general, exhibit no symptoms or much milder disease than adults. The evidence so far suggests that children are not commonly the first person to be infected in a family- it is usually another adult. If the adult is not in a clinically extremely vulnerable group, then shielding from your child is not necessary. Taking into account several factors including children's educational needs, we not recommend their staying at home unless your doctor advises this.
You should not change your medication unless you are advised to do so by your uveitis /rheumatology team.
If you are in a clinically extremely vulnerable group and you have a child who is expecting to go back to school you will be shielding until 30th June . We are currently encouraging you to have a one-to-one consultation with your doctor to speak about your specific circumstances.
15. How do I / my child get tested for COVID-19?
Testing is for patients with symptoms, healthcare workers , care home residents, care home workers and essential workers. There is currently no testing available for patients who have no COVID-19 symptoms, which includes those who may have been possibly exposed to COVID 19 unless they are about to have certain types of surgery.
16. What about mental health?
You might be worried about coronavirus (COVID-19) and how it could affect your life. You may have been staying at home or avoiding other people. You may be worried about future risk of contracting COVID-19 infection. This might feel difficult or stressful. But there are lots of things you can try that could help your wellbeing. Have a look at resources from MIND. Uveitis CSG has also posted a youtube video which gives you all sorts of practical advice.
17. What does the future hold? Will there be a vaccine?
We all need a sustainable plan for several months into the future while vaccines are designed and tested. It is likely we will be living with the coronavirus for a long time. In general most of the vaccines being developed will not be 'live' so that patients on immunosuppression can have them.
Reliable resources for the UK are:
For parents and children:
What is shielding
General advice for the public:
Social distancing and self / household isolation: