Are people with Rett at an increased risk from COVID-19?

Update 08.09.20

Reverse Rett medical advisors have asked us to inform families that all people with Rett Syndrome are at high risk from complications of COVID-19 and should be treated in the same way as anyone else who is deemed extremely vulnerable.

During the on-going COVID-19 crisis, there has been some debate in the community about whether or not people with Rett Syndrome should be considered vulnerable, as a group, or at high risk of complications from Covid-19 infection.

Some families of both children and adults with Rett Syndrome received letters advising them to shield and some did not. Some received letters late, several months into the crisis and some received them after contacting their GP directly or registering on the government website.

At Reverse Rett, we continue to advise caution to all families and carers of children and adults with Rett Syndrome. Even if you are not sure if your child or adult is vulnerable, where possible, try to follow the guidance and to exercise ongoing caution, even where shielding is paused.

Full government guidance for protecting vulnerable people can be found here.

Here are some additional things you can do to try to keep someone with Rett Syndrome safe and help identify issues early:

  1. Take daily observations (temperature, blood pressure, heart rate, oxygen saturation). You may not have all of this equipment, but the more you can do the better. If there are any concerning readings, or if there is a marked change from her normal readings, please do inform a medical professional.

2. Follow the Public Health England strategy of social distancing, even within your home, and hand washing as much as possible. Any non-essential contact with others should be reduced if possible.

3. Ensure that you monitor the person’s symptoms closely. If they develop a fever or dry cough, please do inform a medical professional. Moreover, if they develop any new respiratory symptoms/you see a change in their behaviour that concerns you, please do inform a medical professional.

Help arranging collection/delivery of essential supplies:

Essential food parcel deliveries ended on 31st July. If you are on a supermarket’s priority list for delivery slots you will stay on there after this date.

In many local areas, informal groups of volunteers are still helping vulnerable families even though shielding has been paused. You can find these by searching *name of town/village covid 19 support on Facebook or on search engines.

Be aware that these are informal groups and although some have background check requirements and processes for managing money etc whilst helping self-isolating households, some will not, so care is needed in making arrangements for assistance. 

Ask family, friends and neighbours to support you and use online services.

NHS Volunteer Responders are also still available for help with getting shopping and essential supplies. You can choose what products you want and when you want them, and an NHS Volunteer Responder will then pick up and deliver your shopping to you. They can also pick up prescriptions or any other essentials you need. Call 0808 196 3646 (8am to 8pm) to arrange volunteer support.

If there’s a local lockdown or you need urgent help and have no other means of support, contact your local authority to find out what support services are available in your area.

For further information about how to get food and other essential supplies, please see the guidance on accessing food and essential supplies.