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

Update 1st June 2020

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 shielded 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 have received letters advising them to shield and some have not. Some received letters late, several months into the crisis and some have 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 for shielding which is as follows: 

  1. If you wish to spend time outdoors (though not in other buildings, households, or enclosed spaces) you should take extra care to minimise contact with others by keeping 2 metres apart.
  2. 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 (ideally the same person each time).
  3. Stay alert when leaving home: washing your/their hands regularly, maintaining social distance and avoiding gatherings of any size.
  4. You should not attend any gatherings, including gatherings of friends and families in private spaces, for example, parties, weddings and religious services.
  5. You should strictly avoid contact with anyone who is displaying symptoms of COVID-19 (a new continuous cough, a high temperature, or a loss of, or change in, your sense of taste or smell).

On 22 June the government set out a series of steps for further relaxing shielding guidance which will come into effect on 6 July and 1 August.

From 6 July, the government will be advising:

  1. You may, if you wish, meet in a group of up to 6 people outdoors, including people from different households, while maintaining strict social distancing.
  2. You no longer need to observe social distancing with other members of your household.
  3. In line with the wider guidance for single adult households (either an adult living alone or with dependent children under 18) in the general population, you may from this date, if you wish, also form a ‘support bubble’ with one other household. All those in a support bubble will be able to spend time together inside each other’s homes, including overnight, without needing to socially distance.
  4. From 1 August the government will be advising that shielding will be paused. From this date, the government is advising you to adopt strict social distancing rather than full shielding measures. Strict social distancing means you may wish to go out to more places and see more people but you should take particular care to minimise contact with others outside your household or support bubble. In practice this means that from 1 August you can go to work, if you cannot work from home, as long as the business is COVID-safe.
  5. Children who are clinically extremely vulnerable can return to their education settings if they are eligible and in line with their peers. Where possible children should practise frequent hand washing and social distancing
  6. You can go outside to buy food, to places of worship and for exercise but you should maintain strict social distancing
  7. You should remain cautious as you are still at risk of severe illness if you catch coronavirus, so the advice is to stay at home where possible and, if you do go out, follow strict social distancing.

This information has been taken from Public Health England Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19

Easy read guidance can be found here Guidance on protecting people most likely to get very poorly from coronavirus (shielding)

Here are some 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:

In many local areas, informal groups have been set up with volunteers who can help which you can find by searching *name of town/village covid 19 support on Facebook or on search engines. These groups can also provide information on cafes, shops and restaurants in your local area who are providing delivery services.

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.

If you’d like help with your shopping, NHS Volunteer Responders are also available. 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 you cannot get the help you need, the government can help by delivering essential groceries and support. For further information about how to get food and other essential supplies, please see the guidance on accessing food and essential supplies. If you urgently need food or care, contact your local council.