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COVID-19 and Rett

The coronavirus (COVID-19) outbreak is a time of great concern for everyone, especially if you are caring for a child or adult with Rett Syndrome.

The situation is changing daily. We are in close contact with Professor Santosh and team at the Centre for Personalised Medicine and other UK Rett clinicians and will continue to work to bring you the latest information on COVID-19 and Rett.

We have had many question about coronavirus and how it may affect people with Rett Syndrome.

As well as regularly publishing news articles in the news blog section of the website, we will publish updated information here so that it is all in one place and easy to find.

It also important that families and carers also seek advice from their local clinicians, GPs, paediatricians and other specialists to support their decisions at this difficult time.

COVID-19 & Rett FAQ

For people who are more vulnerable, including people with Rett Syndrome, Public Health England guidance on shielding and protecting vulnerable people was updated on March 24th 2020.

For the next 12 weeks we are instructed to:

  • Stay at home at all times and avoid any face-to-face contact with others
  • Visits from people who provide essential support to you such as healthcare, personal support with your daily needs should continue, but carers and care workers must stay away if they have any of the symptoms of coronavirus (COVID-19).
  • All people coming to your home should wash their hands with soap and water for at least 20 seconds on arrival to your house and often while they are there.

For everyone else, Public Health England full guidance on staying at home and away from others was issued on 23rd March 2020.

For the next three weeks we are instructed to:

  • Only go outside for food, health reasons or work (where this absolutely cannot be done from home)
  • Stay 2 metres (6ft) away from other people
  • Wash your hands as soon as you get home

Updated 26.03.2020

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.

To protect someone with Rett Syndrome from COVID-19 infection: 

Do not leave your house for 12 weeks. 

Arrange for people to leave food and medication outside your door. 

Do not let delivery people in and do not go out to meet them. 

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.

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)

Wearing a surgical or cloth mask will not protect you from infection but if you are already symptomatic, it may help to reduce the risk to those around you.

If you are caring for someone with Rett Syndrome and you are in any way symptomatic, you should avoid providing care to them if at all possible.

If this is not possible, you should wear a mask to protect them from coughs and sneezes.

People with COVID-19 being looked after in hospital are in the highest degree of isolation, with healthcare professionals wearing full protection.

They will be kept completely separately from the general public attending appointments. 

However, there is still some risk of infection. All non-essential appointments are currently being cancelled and remote appointments are being set up as appropriate.

You should avoid going to hospital unless it is absolutely necessary.

Do not go to hospital if you or someone else in your family has COVID-19 symptoms. Call 111 or visit NHS 111 online.

Updated 25.03.2020

People with Rett syndrome are at high risk from complications of COVID-19 because they are at higher risk than the general population of developing respiratory infections.

NHSE are contacting a large list of patients (1.5 million) who they deem to fall into this group.

They are sending this information out quickly and you may not have received a letter. We also know that Rett Syndrome (and some other rare diseases) are poorly understood by the NHS.

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.

To protect someone with Rett Syndrome from COVID-19 infection:

Do not leave your house for 12 weeks.

Arrange for people to leave food and medication outside your door.

Do not let delivery people in and do not go out to meet them.

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. 

The government is in the process of setting up a more formal NHS volunteer network. More information will provided as it becomes available.

Updated 26.03.2020



 

We recommend that people are prepared and ensure that they have a reasonable back up such as extra antibiotic treatment readily available in the event of increased respiratory symptoms. 

It may be possible to obtain a prescription of any regular medications you have run out of through NHS 111 online here.

For help picking up or arranging prescriptions, call 0800 028 8327

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.

The government is in the process of setting up a more formal NHS volunteer network. More information will provided as it becomes available.

Updated 26.03.2020

NHS Trusts around the UK are currently making the decision to postpone the opening of any new clinical trials, along with potentially suspending a number of open trials. This may include the two current trials for Rett Syndrome.

Those who are currently on the UK Sarizotan trial (extension period) based at King’s College Hospital in London, have been contacted and all appointments have been changed to remote consultations.

For the time being, the Cannabidiol trial at Alder Hey remains active with patients still required to attend study visits in person. No new patients will be admitted during the course of this crisis.

If trial visits are suspended, trial medication may be couriered directly to your home address, or collection can be arranged by a person nominated by yourself.

We are continuing to monitor the ongoing situation carefully. As the situation evolves, we will try to provide you with as much information as we can. If you have any direct concerns about potential COVID-19 infection, please use the NHS 111 online COVID-19 service.

If you have a question which has not been answered here, please contact us on 0161 413 0585 or by email info@reverserett.org.uk

111.nhs.uk

NHS 111 Online – About coronavirus (COVID-19)

Explain to your employer that someone in your house is at high risk for complications of Covid-19 and is shielding.

Ask if they can support you with social distancing.

Can they change your role so that you are not coming into regular contact with the general public?

Can they provide protective equipment?

Can you be relocated so that you are working away from others?

When you get home from work, before having any contact with other family members:

Leave bags and coats by the door

Remove shoes and leave by the door or outside

Do not touch anything (light switches, door handles etc) until you have washed your hands 

Wash hands with soap for more than 20 seconds

Have a shower 

Clean your phone or purse/wallet 

Put on clean clothes

If you already have carers coming into your home, it’s likely that this is because it is essential for your person’s care and well-being that they and you, their family, have this support.

The current situation is more stressful even than your normal daily life, because you are more isolated and the person with Rett Syndrome is not able to access their usual activities; school, college, respite, day centre etc.

The situation could go on for many weeks and you will need to stay strong both physically and emotionally. It is also possible that you could become ill yourself, so having a back up plan, including other carers who are able to meet your person’s needs, is important.

Here are some rules you can put in place to minimise the risk of spreading the infection:

1. Don’t allow carers/nurses to come into your home if they have any signs of a cold or cough type illness, no matter how minor.

2. Display this poster to put on your front door to advise anyone entering your home of the precautions they need to take.

3. Carers should leave their coat in their car or remove it at the door. No bags or phones should enter your living area.

4. Carers should wash their hands and change into clean clothes for the shift, leaving their own clothes in a bag in the hallway.

4. Use antibacterial wipes to wipe down any phones, glasses or other items which are essential during their shift.

5. Ask your care staff to have limited close 1:1 contact with your child wherever possible, i.e. No kisses or cuddles or talking to them up close by their face unless vital 🙁

6. Ensure that carers are using the proper hand washing technique. Show them this video. Have soap and paper towels visible and available at all sinks. Remind them to wash their hands very often by washing your own and passing them the soap.

For person with Rett Syndrome:

  • Changing stuff – pads, wipes, sacks
  • Pyjamas
  • Bed socks
  • Favourite teddy/toy
  • iPad/DVD player + charger
  • Favourite book(s)
  • Wash bag – toothpaste, toothbrush, hairbrush, soap, flannel, hand towel, hand gel/sanitizer, scrunchie
  • Hospital passport and/or
  • List of medications printed to hand in – name, d.o.b., hospital number, meds, doses, times
  • List of professionals involved + contact numbers, printed to hand in – name, role, contact number + school/respite/hospice details
  • Box/bag medications (especially if prescribed any not commonly used in children’s wards, as pharmacy will likely not have in stock to prescribe immediately and need to order in)
  • If peg/button/gastro fed – feed, syringes, extension tube, giving sets, pump (enough for a couple of feeds until situation established)
  • Favourite snacks
  • Drink cup/straw

For yourself:

  • Your own wash bag and toiletries
  • Notebook + pen
  • Own medication
  • Phone + charger
  • Nightwear and change of clothes
  • Purse including cash
  • Snacks and water
  • A good book/Kindle
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Submit any COVID-19 questions you have below

 


For more information and any advice, please don’t hesitate to get in touch.

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