We are being asked by lots of people whether they should be self isolating the person with Rett syndrome they care for. It is a very difficult and personal decision that families must make given their own circumstances, the risks factors to the person with Rett and what they can realistically do to limit the exposure to the virus and chance of catching it.

The government guidance is clear on who falls into the high risk groups in terms of the most likely to have serious and potentially fatal complications (pneumonia) if they catch the virus. Rett syndrome definitely falls into that group and their recommendation based on that alone is you should isolate that person for 12 weeks. Those at greatest risk in the Rett community would be those who have repeated chest infections.

What does that actually look like though? How do people interpret that and apply it to make it manageable for you as a family to reduce the risk as much as possible that they will catch the virus?

I thought it might be helpful if I gave you a personal perspective as to how we interpret and manage this for our family, given our set up and Rosie’s general health.

Rosie is 25. She has classic Rett syndrome (mutation R270X), one of the mutations that is generally associated with the more severe phenotype, and she does fit that bill. She has never walked, has complex epilepsy, dystonia, a gastrostomy and severe autonomic dysfunction which impacts on many aspects of her daily life especially her breathing. She is a forceful breather – alternating between hyperventilating and breath holding throughout the day. At night her breathing is fairly ‘normal’. For over six years she has been using a rebreathing mask to help stabilise her blood gases. She wears this during the day for up to six hours (across the course of the day). She is not however prone to chest infections. She has had flu once in her life,  she was admitted to hospital  (with pneumonia) but she did not need ventilating, just nebulisers and was home after four days.  Despite all that, Rosie is a very happy, sociable young lady who has a full and active life out in the community supported by a fantastic team of carers who I employ using her personal health budget.

She is out every day doing something: swimming, music therapy, the gym, the spa, massage, art classes etc. She has her adapted vehicle she can use but also uses public transport – she is particularly fond of smiling at men on the bus until they either look away embarrassed or they smile back! The carers are always coming and going in our house as I work full time and two days a week I work away in the Luton office, staying overnight.

I also have a partner who works full time and two adult sons still living at home. One is doing his Masters at Uni in London as well as working part-time, the other one working locally.

So what have we decided we can do to keep Rosie as safe as we possibly can?

We have cancelled the activities that Rosie accesses in the community until mid June.

She will not be going out on public transport but she will go in her vehicle either with us or a carer to places where she is not in close contact with other people – so National Trust properties to walk, parks, gardens, woodland walks, dog walks etc. We are not keeping her indoors for the whole 12 weeks but limiting who she is in contact with and exposed to.

We are limiting the visitors to the home to carers and only if they have not had any close contact with anyone who is known to have the virus or is symptomatic of it, and of course as long as they are not symptomatic themselves.

I am now working from home and not travelling to Luton until we feel it is safe to resume, which may not be for 12 weeks.

My partner is working from home full time.

My eldest son is not going to London for Uni and has deferred exams to the autumn. He was probably our biggest risk factor in terms of the virus because of the number of cases in London, as well as using the tubes and trains to get to Uni. He will still do his part time job locally.

My youngest son continues with his part time job.

Everybody has to wash their hands as soon as they come into the house and be particularly vigilant after handling money, using their phones  etc. We clean surfaces including door handles and toilet flushes frequently. Following all the guidance about hygiene.

As Rosie is at home more now we will make sure she is using her stander for at least two hours a day, we have a physio programme to follow, we will invest time in her communication development but we will also make sure she gets some fresh air especially as the weather improves. She can face time friends and other relatives she would normally see.

We feel these are appropriate and reasonable measures that reduce Rosie’s exposure and risk of catching the virus. They are workable for us without everyone going insane and climbing the walls to get out!

But you must do what is right for your own individual set up.  Both Rett charities are sharing valuable information about the virus as well as all the government advice that has been put out. You should weigh up what the risk factors are for the individual you care for and what reasonable, pragmatic measures you can put in place to keep them as safe as you can. No one should feel pressured into taking a particular course of action by anyone else except of course that we all have a role in society to play in keeping the most vulnerable people safe.

Rett UK has extended it’s helpline opening hours to 10pm in the evening, seven days a week. I or Julie Benson will be answering calls and messages during that time. One of us will be available to talk things through with you if you are still not sure what you could and should be doing. Please don’t feel you are have to grapple with this on your own.

I hope that has been helpful but please do contact me if any comments or queries. becky.jenner@rettuk.org